Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Hi Karri and , You are not alone. A big WELCOME from Indiana. (Poly 35) New To This Group Hello to everyone. My name is Karri and my daughter , who is 16, was diagnosed with Poly JRA when she was 13. She went from playing sports at school to not being able to hardly walk or tie her shoes or anything else literally overnight. She currently takes Enbrel 2x week, Metho on Saturdays, Folic acid and lots of tylenol. When I found this site I have to say that I was shocked at how many people were here. With all of these kids that are sick it is hard to believe that noone knows about this disease. I look forward to meeting you all. Karri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 -Hi Tasha, Glad you found us, although im always saddened to hear of another child suffering with JRA. My son is 8 now, but was dx with systemic onset back in June 03 when he was 5. Its been a long and bumpy road, but its been made easier because of all the infomation and support i get here. Currently Nick is on remicade, mtx, prednisone, folic acid, indomethacin, prilosec and zofran. Please know theres a lot of systemic moms on the list with lots of good advice and knowledge. We are all here for each other. we are glad to have you here... hugs Helen and (8,systemic) -- In , " burgesspierce " <burgesspierce@y...> wrote: > > Hi everyone... > > My name is Tasha I live in Northern California and I am Mommy to three > beautiful toddlers, Elijah (age 4), Kiannah (age 3) and Josiah (age > 2). I January 2005, my son Elijah was diagnosed with Systemic onset > JRA. Over the course of the next year, he was hospitialized twice and > has been on various meds. He is currently on Enbrel, Prednisone, > Methotrexate, Naprosyn, Zantac, Folic Acid and Benedryl (due to his > reaction to the Enbrel shots)... and that covers it all. This past > year has been such a roller coaster for us, and we are still learning > to adjust to life with JRA each and every day. I would love to get > connected with some of you who in this group and share stories, info, > etc. Please relpy here, or you may email me directly at > rtpierce@s... > > Look forward to chatting with you all! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Hi Tasha, I found this group two years ago and it has been an immense help for me. My son is now 9 but has had systemic jra since he was 3. He wasn't diagnosed or treated until he was 7. He is holding his own and stable now. He does the weekly 1ml mtx. injection and daily folic acid and that's it for now. We've had some really really bad times, as most of you have, and am thankful that things are quiet now. We live in the Boise area and have two other healthy girls ages 8 and 4. I think the more you learn about this disease, the better prepared you are to handle the rough times. Welcome. Stacia and Hunter 9 systemic, uveitis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Ok I totally second the gross taste of MTX. I remember even opening the bottle and smelling the way the pills smelled before taking them would make me want to puke. Yuck! (JAS, 21) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 I take Arava which has given me less bad side effects Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi Tasha, Wow, Elijah is on a lot of meds for such a little guy. Sorry the family is going through this. Feel free to ask any questions. This group is not shy and full of info. New to this Group Hi everyone... My name is Tasha I live in Northern California and I am Mommy to three beautiful toddlers, Elijah (age 4), Kiannah (age 3) and Josiah (age 2). I January 2005, my son Elijah was diagnosed with Systemic onset JRA. Over the course of the next year, he was hospitialized twice and has been on various meds. He is currently on Enbrel, Prednisone, Methotrexate, Naprosyn, Zantac, Folic Acid and Benedryl (due to his reaction to the Enbrel shots)... and that covers it all. This past year has been such a roller coaster for us, and we are still learning to adjust to life with JRA each and every day. I would love to get connected with some of you who in this group and share stories, info, etc. Please relpy here, or you may email me directly at rtpierce@.... Look forward to chatting with you all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Helen, I had no idea Nick was on so many meds also. I have a feeling this is common among all of us. I was on so many at his age as well and I remember it being a nightmare. As I grew older and I started speaking for myself instead of my Mom and Dad, I quized my Rheumy hard. Over half of the meds I was taking were to just counter act the side effects of the main drug. Some were to counteract the side effects of the side effect drugs. It was craziness. For example, when I went on Enbrel, the Dr. said they get the best results when MTX is combined with Enbrel. Well add on Folic Acid and now you are up to 3 mandatory drugs. I asked him to try Enbrel alone and if I was not seeing it as effective then we could add other drugs. In my case I am only taking enbrel and have for some time. If I had not inquired/demanded I try only one, I would be on MTX and Folic Acid as well. I just believe in evaluating how much I can take and which pain or damage is greater, the meds, or the disease. As you can probably tell, I am not a big fan of MTX. It is such a bad drug. Re: New to this Group -Hi Tasha, Glad you found us, although im always saddened to hear of another child suffering with JRA. My son is 8 now, but was dx with systemic onset back in June 03 when he was 5. Its been a long and bumpy road, but its been made easier because of all the infomation and support i get here. Currently Nick is on remicade, mtx, prednisone, folic acid, indomethacin, prilosec and zofran. Please know theres a lot of systemic moms on the list with lots of good advice and knowledge. We are all here for each other. we are glad to have you here... hugs Helen and (8,systemic) -- In , " burgesspierce " <burgesspierce@y...> wrote: > > Hi everyone... > > My name is Tasha I live in Northern California and I am Mommy to three > beautiful toddlers, Elijah (age 4), Kiannah (age 3) and Josiah (age > 2). I January 2005, my son Elijah was diagnosed with Systemic onset > JRA. Over the course of the next year, he was hospitialized twice and > has been on various meds. He is currently on Enbrel, Prednisone, > Methotrexate, Naprosyn, Zantac, Folic Acid and Benedryl (due to his > reaction to the Enbrel shots)... and that covers it all. This past > year has been such a roller coaster for us, and we are still learning > to adjust to life with JRA each and every day. I would love to get > connected with some of you who in this group and share stories, info, > etc. Please relpy here, or you may email me directly at > rtpierce@s... > > Look forward to chatting with you all! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , could you further explain your dislike of mtx...Did you have serious side effects from it, or are there other reasons? I know what you mean about making an effort to limit drugs. I was a the derm clinic with drea and they wanted to put her on a drug for the blotchy rash that she gets. I was explaining to them that aundrea is unaware that she has the rash unless she is looking in the mirror and that it causes no problems for her at this time. They were really frustrated with me for not agreeing to put her on a drug. Of course due to her tummy problems with mtx they wanted to add drugs to counteract it. I elected to go the inj route in order to avoid more meds....Man it can be such a balancing act and I am certain its even harder for the ones that are so resistant to common treatment plans. sonia (aundrea 10 systemic jra)- -- In , " " <brian.taylor@h...> wrote: > > Helen, > I had no idea Nick was on so many meds also. I have a feeling this is > common among all of us. I was on so many at his age as well and I remember > it being a nightmare. As I grew older and I started speaking for myself > instead of my Mom and Dad, I quized my Rheumy hard. Over half of the meds I > was taking were to just counter act the side effects of the main drug. Some > were to counteract the side effects of the side effect drugs. It was > craziness. For example, when I went on Enbrel, the Dr. said they get the > best results when MTX is combined with Enbrel. Well add on Folic Acid and > now you are up to 3 mandatory drugs. I asked him to try Enbrel alone and if > I was not seeing it as effective then we could add other drugs. In my case > I am only taking enbrel and have for some time. If I had not > inquired/demanded I try only one, I would be on MTX and Folic Acid as well. > I just believe in evaluating how much I can take and which pain or damage is > greater, the meds, or the disease. > > As you can probably tell, I am not a big fan of MTX. It is such a bad drug. > > Re: New to this Group > > > -Hi Tasha, > > Glad you found us, although im always saddened to hear of another > child suffering with JRA. > > My son is 8 now, but was dx with systemic onset back in > June 03 when he was 5. Its been a long and bumpy road, but its been > made easier because of all the infomation and support i get here. > Currently Nick is on remicade, mtx, prednisone, folic acid, > indomethacin, prilosec and zofran. > > Please know theres a lot of systemic moms on the list with lots of > good advice and knowledge. We are all here for each other. > > we are glad to have you here... > > hugs Helen and (8,systemic) > > > -- In , " burgesspierce " <burgesspierce@y...> > wrote: > > > > Hi everyone... > > > > My name is Tasha I live in Northern California and I am Mommy to > three > > beautiful toddlers, Elijah (age 4), Kiannah (age 3) and Josiah > (age > > 2). I January 2005, my son Elijah was diagnosed with Systemic > onset > > JRA. Over the course of the next year, he was hospitialized twice > and > > has been on various meds. He is currently on Enbrel, Prednisone, > > Methotrexate, Naprosyn, Zantac, Folic Acid and Benedryl (due to > his > > reaction to the Enbrel shots)... and that covers it all. This > past > > year has been such a roller coaster for us, and we are still > learning > > to adjust to life with JRA each and every day. I would love to > get > > connected with some of you who in this group and share stories, > info, > > etc. Please relpy here, or you may email me directly at > > rtpierce@s... > > > > Look forward to chatting with you all! > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Welcome Karri. It is a great list and yes, it is so sad that so many are here and there isn't as much awareness about this disease and its impact. I understand your frustration of the overnight change. My daughter was 14 and on a travelling ballet group on pointe, school dance team etc. And now that whole part of her life is over. I read your daughter's post. She is an amazing young woman. e, mom to joe 19 poly karrilee63 <karrilee63@...> wrote: Hello to everyone. My name is Karri and my daughter , who is 16, was diagnosed with Poly JRA when she was 13. She went from playing sports at school to not being able to hardly walk or tie her shoes or anything else literally overnight. She currently takes Enbrel 2x week, Metho on Saturdays, Folic acid and lots of tylenol. When I found this site I have to say that I was shocked at how many people were here. With all of these kids that are sick it is hard to believe that noone knows about this disease. I look forward to meeting you all. Karri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 , I guess you would have to actually have taken MTX to completely understand, but MTX gives you a bad taste in your mouth that is a chemical taste. It is there all the time and never goes away. The sickness you feel is a type of hot flash/anxious feeling that won't go away and you get no relief in vometing as you would with an upset stomach. It just cannot be good. At one time I researched exactly how it fought RA and it seemed to detrimental to me. Not that killing off your immune system with enbrel is any better. Re: New to this Group > > > -Hi Tasha, > > Glad you found us, although im always saddened to hear of another > child suffering with JRA. > > My son is 8 now, but was dx with systemic onset back in > June 03 when he was 5. Its been a long and bumpy road, but its been > made easier because of all the infomation and support i get here. > Currently Nick is on remicade, mtx, prednisone, folic acid, > indomethacin, prilosec and zofran. > > Please know theres a lot of systemic moms on the list with lots of > good advice and knowledge. We are all here for each other. > > we are glad to have you here... > > hugs Helen and (8,systemic) > > > -- In , " burgesspierce " <burgesspierce@y...> > wrote: > > > > Hi everyone... > > > > My name is Tasha I live in Northern California and I am Mommy to > three > > beautiful toddlers, Elijah (age 4), Kiannah (age 3) and Josiah > (age > > 2). I January 2005, my son Elijah was diagnosed with Systemic > onset > > JRA. Over the course of the next year, he was hospitialized twice > and > > has been on various meds. He is currently on Enbrel, Prednisone, > > Methotrexate, Naprosyn, Zantac, Folic Acid and Benedryl (due to > his > > reaction to the Enbrel shots)... and that covers it all. This > past > > year has been such a roller coaster for us, and we are still > learning > > to adjust to life with JRA each and every day. I would love to > get > > connected with some of you who in this group and share stories, > info, > > etc. Please relpy here, or you may email me directly at > > rtpierce@s... > > > > Look forward to chatting with you all! > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Ok, I found the info that makes me shy away from this drug. Methotrexate ( meth-o-TREX-ate) belongs to the group of medicines known as antimetabolites. It is used to treat cancer of the breast, head and neck, lung, blood, bone, and lymph, and tumors in the uterus. It may also be used to treat other kinds of cancer, as determined by your doctor. Methotrexate blocks an enzyme needed by the cell to live. This interferes with the growth of cancer cells, which are eventually destroyed. Since the growth of normal body cells may also be affected by methotrexate, other effects will also occur. Some of these may be serious and must be reported to your doctor. Other effects, like hair loss, may not be serious but may cause concern. Some effects may not occur for months or years after the medicine is used. I am only in favor of killing brain cells once in a while. taylor (poly 35 since 12) Re: Re: New to this Group Ok I totally second the gross taste of MTX. I remember even opening the bottle and smelling the way the pills smelled before taking them would make me want to puke. Yuck! (JAS, 21) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 e; is wise beyond her years but that is not to say the road has not been long for sure. enjoys speaking to groups whenever she can. She has won 4 state public speaking titles in 4H and she plans on being a broadcaster in television. Since she is the good will ambassador here we have gotten to know many kids around Ohio and she is so good with the other kids. At camp she litterally did not have a free extremeity the entire time. She has written to every television station trying to raise awareness and she is working on a video too. People need to know how these kids suffer every day. She has a friend that goes to a school that teases him because he is extrememly small. That furiates her. I guarentee that if she went to the same school she would be right in the middle setting them all straight. She is small but she is mighty. These kids deal with issues that adults never have to deal with. Growing up these days are tuff and then you throw in this disease and I don't know how they do it. Then you have us parents... Wow... I'm exhausted trying to be the constant cheerleader. Worrying about what the medicines are doing to her. Which bothers her too. When she goes in for steroid injections into her knees and elbows, she will refuse and anesthisia and she will not take any local. She lays there and says " Lets just do it " and they do it as fast as they can. She does not want anymore stuff in her than what is necessary. I hate that she has to make that choice this young. I hate Sundays!!!! By Sunday morning the methotrexate has kicked in and there goes the day. I hate the Enbrel shots to. When she found out that Enbrel was the next step for her and she would have to have the shots, she almost passed out. She has always been terrified of shots. I always took two nurses to give her shots and she kicked, screamed and almost passed out every time. I knew that she needed to give these shots to herself right off the bat. So, I made the decision on the day we went in to get the first shot that I was not going to leave that hospital until she was able to give herself a shot. It took a couple hours but she did it! She cried just about the entire time. She would hold the needle within an inch of her stomach and just cry. It was one of the hardest things I have ever done. The nurse, who is a diabetic, asked if she would feel better if she gave the nurse a shot in her arm. At this point I think was glad to inflict pain on one of us and gladly said yes. After she gave the nurse a shot she was able to do it herself. I was so tremendously proud of her. I give her shots in her arms and she does the rest. She will go off to college soon and I am very comfortable with her being responsible for her medicine and for taking it. What a relief. I am rambling now, but it is nice to have people to talk to who understand. Thanks for that. Karri (, 16, Poly. JRA) > Hello to everyone. My name is Karri and my daughter , who is 16, > was diagnosed with Poly JRA when she was 13. She went from playing > sports at school to not being able to hardly walk or tie her shoes or > anything else literally overnight. She currently takes Enbrel 2x week, > Metho on Saturdays, Folic acid and lots of tylenol. When I found this > site I have to say that I was shocked at how many people were here. > With all of these kids that are sick it is hard to believe that noone > knows about this disease. I look forward to meeting you all. > > Karri > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2006 Report Share Posted June 6, 2006 Hi! Be careful with " normal levels " . Who says they are normal because some doctors consider different things to be normal. Always get the numbers from the doc so you can share them here. Diet and exercise should work but it depends what kind of diet and what kind of exercise is right for you. And the most important thing about diet and exercise is consistency. Putting your body on a schedule and being patient with it. It's not so easy to get up and exercise with a thyroid condition, however, it is important to. :0) notcommon76 <notcommon76@...> wrote: Hello, I have struggled and I do mean struggles with hypothyroidism for about 7 years now. My levels never seem right, even when the TSH shows I am within normal range, I still have the symptoms. I am constantly doing the weight battle and I get frustrated because diet pills don't work for me, diets don't work, exercise doesn't work. Can anyone in this group tell me what to do to lose weight? Thanks, Not Common jessica stanziale __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2006 Report Share Posted June 6, 2006 try getting proper treatment! http://www.stopthethyroidmadness.com http://www.optimox.com http://www.westonaprice.org Gracia Hello, I have struggled and I do mean struggles with hypothyroidism for about 7 years now. My levels never seem right, even when the TSH shows I am within normal range, I still have the symptoms. I am constantly doing the weight battle and I get frustrated because diet pills don't work for me, diets don't work, exercise doesn't work. Can anyone in this group tell me what to do to lose weight? Thanks, Not Common ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.2/356 - Release Date: 6/5/2006 ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.2/356 - Release Date: 6/5/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 I jeannine I too am sortof new, dx 5/2003 stage 3 age 44, live in wisconsin. I too have a LOT OF ITCHING and gained a lot of weight I'm taking 1200 mg a day of Ursodiol. (I take a lot more meds too) but the itching they have me doing light treatment UVB 3 time a week it sortof helps I quess, for the healing of the sores > > Hello > Not sure what to say.....dx this spring with pbc stage 2-3 age 52,live > in Iowa, Itch a lot got fat and getting more so as I speak.hate it.urso > 1000 a day. next week get 3 mo check up any input Thanks jeannie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2006 Report Share Posted September 21, 2006 Welcome to the group, Tilly. You'll find this group can be very helpful and there's a big assortment of Liver problems and symptoms. I've learned alot from this group. It's an interesting to learn in this manner and to be connected to people who have so much in common with you. I love Kissimmee. We have a timeshare down there and although we don't go there every year, we take our grandchildren from time to time. We were there in June with my daughter & her 3 yr. old twins. I have to admit that this trip was more difficult for me due to my health status (just can't run through Disney like I used to). Good luck with the biopsy... serdrew96 <serdrew96@...> wrote: Hi, Just posting a short note to introduce myself to the group and, hope too share and learn more and more about this pesky Disease. I was actually diagnose with AIH 17 years ago at the age of 24 and at the time of initial Biopsy my diagnosis was Autoimmune Hepatitis progressing to Cirhossis. I have had several relapses throughout the years which, has led to beginning stages of Cirhossis (Unfortunately), I am off prednisone and have been for serveral months (Hurray!) but, I am still on Imuran 100mg a day and, for what the doc says I will be on them forever. Will be getting a biopsy done soon and, hoping for the best. I feel pretty good right now and levels are staying low. Got to stay positive. So, much for a short post. God Bless, Tilly Kissimmee, FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2006 Report Share Posted November 10, 2006 Hi Linni, Oh yes, you sound just like me, that is what I was until last June. My symptoms where so meaningless to me. Occasional pain in my legs while walking, and I walked 4 miles a day, 4 days a week. It was so infrequent that I didn't think much of it other than, yup, lady your getting older. I found occasional sore legs after being on them all day, but so infrequent, I just thought the same thing. Then I got a case of fashiitis in my right foot. had it treated and got good shoe inserts and was fine. had surgery for a tendon problem in my right arm (long storyI but taken care of. Then found sporadic difficulty raising my right leg to go up a very steep front step. So sporadic that even my primary said I would need to be seen when it happened to try and figure it out. Then last January 2006 I found myself in a lot of pain on my right rear end when I got up out of bed in the morning, about once a week. So bad that I couldn't bend to raise the toilet seat or wipe myself, but it was only once a week and lasted about 10 minutes. Thought it strange but went on with my life. That is until mid February 2006, when I couldn't get out of bed. The pain was excruciating on my right side from my buttocks all the way down my right leg to my foot and back up again. I was screaming in pain and my hubby had to help me get up by messaging the area and it took me an hour of the worst pain I ever had to get out of bed. Once up and out of bed and I sat for a short time I could get around but the pain was really bad and I was limping terribly and couldn't stand up straight. All new. Saw the doc covering for my primary who had immediate xrays done and supposedly they where normal. He said I needed to see a neurosurgeon to determine if I needed an MRI because it was nerve pain I was getting. The wait to be seen was 6 weeks and new I couldn't go on this way so came home and called the sports medicine orthopedic office I used for my arms. Long story short, I was seen the next day, had MRI and was diagnosed with spinal stenosis involving the L4-L5 vertebrae, some spinal arthritis. I tried 3 rounds of spinal injections which didn't help and knew I need surgery as I couldn't exist the way I was in the horrible pain I was in and it was getting worse. I saw several other spinal docs for other opinions and returned to the original doc and had the surgery done in mid June. I was in and out of the hospital in less than 12 hours, was up walking outside around my yard 2 days later and have never regretted the surgery. I'm doing fine now and have my life back My recommendations to you is this. Get the results of the MRI from your doc. Get the radiologist report of the MRI, the xrays you have had and the readings and get the MRI pics and take them with you and go ASAP to a sports medicine orthopedic spine specialist. The reason I say sports medicine orthopedic doc, and not a neurosurgeon or plain orthopedic spinal surgeon is because of the experiences I have had researching and seeing other docs about myself. The end conclusion after seeing 8 docs in the top hospitals in Boston is this. Sports medicine orthopedic docs are the most up to date on any and all new procedures than the others. They are the ones that will do the least cutting necessary to do surgery. The neurosurgeon wanted to do at least a 4-6 inch incision, the ortho docs wanted to do at the very least a 3-5 inch incision, the sports medicine ortho docs both said they would start with a 1 inch incision and only enlarge it if it was needed and would only enlarge by 1/2 inch at a time. Sports medicine ortho docs understand all the mechanics of surgery and the complications that come with cutting muscles and the loss of function it can create. The others appear to be more knife happy and just want to do the surgery that is easier for them and not the patient. 6 of the docs told me that it was impossible to do any type of spinal surgery with a 1 inch incision and my recoup would be very long. They wanted me to wait till the stenosis was much farther along in some kind of number process they use that appears on a chart of some kind. I just looked at them and said "you have to be nuts, I'm in agony, can't walk more than 50 feet, am dragging my leg, can't bend it and look like I am recovering from a stroke and you want me to wait till it's worse than this?" There response was yes. The 2 sports medicine ortho docs, advised not waiting till it was like that, Needless suffering for a patient, much easier to do now for the patient before it is much more serious and complicated and easier for the doc to do as well. That settled it for me and I went back to my original doc and had it done. I had a 1 inch incision with 1 stitch. Surgery took about 2 1/2 hours. Was home that night, and I came home without the pain in my leg. I walked like a normal person again and I was standing upright right away. The post op pain hurt, but believe me when I say it was a piece of cake compared the the horrible pain I had going in to the hospital. You need a specialist to treat your spinal problems and by the way, my xrays where not normal. They showed some of the stenosis problems but the radiologist didn't read them correctly. Please get yourself to a sports medicine doc ASAP and start treatment for any and all of the problems you have before it gets any worse. You are right that spinal stenosis doesn't get better. The spinal injections are a temporary fix that may or may not kill the pain. It won't make the stenosis any better. Eventually the injections stop working and you can only get so many of them in a year before it's unsafe. I think it's 3. At the point when the injections stop working the only alternaltive is surgery. As the time passes you get older and older and it becomes more complicated to have the surgery because of increasing age, other medical problems that develop and healing takes longer because of age and the stenosis has gotten worse. My doc says I recovered as quickly as I did because of my age, I'm only 55, didn't wait till I was all but in a wheelchair, did everything I was supposed to do, including all the physical therapy etc. and I was confident that I made the right choice in my mind both to have the surgery and confidence in the doc. Depending on where you live, I can recommend my doc to you, but please get yourself with all the xrays and MRI stuff to a sports medicine doc right away. Fran Hall <writerhall@...> wrote: I'm new here and didn't quite want to post until I'dbeen positively diagnosed with spinal stenosis - butmy pain is getting worse and worse. I'm just at thebeginning stages of getting this whole thing diagnosedand looked at. My story: I have had lower back painfor as long as I can remember. I'm 56 now. but in thelast couple of years the back pain is mostly gone -but the pain is now in my legs. Anything in a standingposition and I'm in pain - back of my legs. My legsfeel like lumps of cement when I walk.I've had an X-ray which shows osteoarthtitis of thespine, and some vertebrae problems. I had the X-ray,because a bone density test revealed severeosteoporosis. My dr. said it looked like stenosis, and sent me to aphysio who says my symptoms are 'classic spinalstenosis.' I had an MRI a week ago to try to get ahandle on this this,and will see my dr about it thisweek. I don't know what that next step is. Surgery? Isthat the only option?But what I do know, is that since this summer, I can'twalk maybe more than five - ten minutes without painin my legs. And this is from a person who used to runon a regular basis - and in my younger years wonraces! I then shifted to walking and up until veryrecently didnot survive without my 45 minute walkevery morning. It's what refreshed me and sent me onmy way. I can't do that now. Although for the time being I CAN a bicycle, and amtrying to do that on a regular basis. Plus I do Yoga -but some of the postures, anything bedning backwardsis severe and awfully pain. But some of the posturesactually feel good and I think help. My take on the thing is that this is progressive andwon't get any better. This has been SO slow coming onwith me that I hardly recognized it. a year ago, forexample, the back of my legs hurt some of the time,but not all the time. And if I 'walked through it' itgot better. Now, it only get worse. Plus, Im finding the things I used to enjoy painfuland tiring. I went Christmas shopping the othermorning with my husband for things we have to sendoverseas. Well, even leaning onto the shopping cart,after a while hurt, and it was like I needed allafternoon and evening to recuperate. I'm much moretired thtn I used to be. Simple things exhaust me,plus I've noticved in the last month when I sit downto releve the pain in my legs, it doesn't relieveright away. It takes a few minutes. I guess I'm writing this because I'm scared, and hopeI make right choices and do the right things. Plus, dothese symptoms sound like yours?Linni__________________________________________________________Cheap talk?Check out Messenger's low PC-to-Phone call rates.http://voice. 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Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 HI Linni, I wanted to share my experience with you. I've had spinal stenosis since the 1990s. I'm 42 now. I trust my orthopedic doctor. My doc has told me that surgery will be the last alternative. I take flexaril and celebrex for my pain. I've been going to a pain management clinic for the epidurals for the past year. I took the three shots this time last year and they worked really well. I'm taking a second round right now which has already helped my pain. I've learned that walking increases the numbness in my legs and it never really goes away. With rest, pain management, and understanding my limitations, I have been able to manage my symptoms. Personally, I don't want surgery until I have to have it. Again that is my personal opinion. Decisions regarding your personal treatment should be discussed with your medical doctors. Those of us on the group can share personal experiences, but I think it's dangerous to take advice from strangers on the internet. I wish you luck and I hope you gain some knowledge from our experiences. Please keep us posted. Nessie > > I'm new here and didn't quite want to post until I'd > been positively diagnosed with spinal stenosis - but > my pain is getting worse and worse. I'm just at the > beginning stages of getting this whole thing diagnosed > and looked at. My story: I have had lower back pain > for as long as I can remember. I'm 56 now. but in the > last couple of years the back pain is mostly gone - > but the pain is now in my legs. Anything in a standing > position and I'm in pain - back of my legs. My legs > feel like lumps of cement when I walk. > > I've had an X-ray which shows osteoarthtitis of the > spine, and some vertebrae problems. I had the X-ray, > because a bone density test revealed severe > osteoporosis. > > My dr. said it looked like stenosis, and sent me to a > physio who says my symptoms are 'classic spinal > stenosis.' I had an MRI a week ago to try to get a > handle on this this,and will see my dr about it this > week. I don't know what that next step is. Surgery? Is > that the only option? > > But what I do know, is that since this summer, I can't > walk maybe more than five - ten minutes without pain > in my legs. And this is from a person who used to run > on a regular basis - and in my younger years won > races! I then shifted to walking and up until very > recently didnot survive without my 45 minute walk > every morning. It's what refreshed me and sent me on > my way. I can't do that now. > > Although for the time being I CAN a bicycle, and am > trying to do that on a regular basis. Plus I do Yoga - > but some of the postures, anything bedning backwards > is severe and awfully pain. But some of the postures > actually feel good and I think help. > > My take on the thing is that this is progressive and > won't get any better. This has been SO slow coming on > with me that I hardly recognized it. a year ago, for > example, the back of my legs hurt some of the time, > but not all the time. And if I 'walked through it' it > got better. Now, it only get worse. > > Plus, Im finding the things I used to enjoy painful > and tiring. I went Christmas shopping the other > morning with my husband for things we have to send > overseas. Well, even leaning onto the shopping cart, > after a while hurt, and it was like I needed all > afternoon and evening to recuperate. I'm much more > tired thtn I used to be. Simple things exhaust me, > plus I've noticved in the last month when I sit down > to releve the pain in my legs, it doesn't relieve > right away. It takes a few minutes. > > I guess I'm writing this because I'm scared, and hope > I make right choices and do the right things. Plus, do > these symptoms sound like yours? > > Linni > > > > _____________________________________________________________________ _______________ > Cheap talk? > Check out Messenger's low PC-to-Phone call rates. > http://voice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Dear Linni and Fran: I wish I had found this support group five years ago...the first time my leg went numb after walking my Airedale about a mile...I have tried Pilates, yoga, massage, acupuncture, etc. And spent a fortune on orthodics and shoes. I have talked with chiroprators, ortho, neuro, surgeons and even when told that I have scolosis, stenosis and spondolothesis, I kept looking for another answer. Finally the neuro surgeon said, yep, you've got it and it'll take a 7 hour surgery and three month body " shell " recovery, I asked what else I could do. I started water aroebics, which I adore, because there was not much pain and I felt so strong...some improvement and some sense of self esteem at being able to feel strong again. I have admitted that I am aging at 64, but my head and heart feel about 38. The worse thing is how life gets put on hold...I haven't been able to walk my dog, run errands. I had my own boutique for twenty five years,with lots of standing and walking. For the past three or four years, I just sat on my butt and did eBay...and gained weight, hid out, lonesome, in pain and now I know, very depressed. The constant pain and anxiety about what was going on in my life have been the worst. In the six month interval from final diagnosis in Feb. by neuro surgeon whom I admire and respect, I went back, thinking that the fusion and caging were my answer, knowing that I would go crazy with three months in the plastic shell, body cast. He said, " here, look at this. " it was the information on the x stop. I figured I didn't have anything to lose since it can be removed if it turns out that I will need the " big surgery " later on... That was 4 plus weeks ago. There is still some pain and numbness on walking, but he says it is inflamation and to wait...I will start rehab in two more weeks... already back walking in the pool. Able to do everything...huge improvement and finally, I am thinking about what I've missed. Self esteem, anger, fear, anxiety, well, I realize how very miserable I've been. It is wonderful to communicate with vital, alive people who are searching for ways to improve. Knowledge really matters and thank God for the Internet and all this infomation. good Luck, Carolyn--- In Spinal Stenosis Treatment , Fran Barron <sunhineagain@...> wrote: > > Hi Linni, > > Oh yes, you sound just like me, that is what I was until last June. My symptoms where so meaningless to me. Occasional pain in my legs while walking, and I walked 4 miles a day, 4 days a week. It was so infrequent that I didn't think much of it other than, yup, lady your getting older. I found occasional sore legs after being on them all day, but so infrequent, I just thought the same thing. Then I got a case of fashiitis in my right foot. had it treated and got good shoe inserts and was fine. had surgery for a tendon problem in my right arm (long storyI but taken care of. Then found sporadic difficulty raising my right leg to go up a very steep front step. So sporadic that even my primary said I would need to be seen when it happened to try and figure it out. > > Then last January 2006 I found myself in a lot of pain on my right rear end when I got up out of bed in the morning, about once a week. So bad that I couldn't bend to raise the toilet seat or wipe myself, but it was only once a week and lasted about 10 minutes. Thought it strange but went on with my life. That is until mid February 2006, when I couldn't get out of bed. The pain was excruciating on my right side from my buttocks all the way down my right leg to my foot and back up again. I was screaming in pain and my hubby had to help me get up by messaging the area and it took me an hour of the worst pain I ever had to get out of bed. Once up and out of bed and I sat for a short time I could get around but the pain was really bad and I was limping terribly and couldn't stand up straight. All new. > Saw the doc covering for my primary who had immediate xrays done and supposedly they where normal. He said I needed to see a neurosurgeon to determine if I needed an MRI because it was nerve pain I was getting. > The wait to be seen was 6 weeks and new I couldn't go on this way so came home and called the sports medicine orthopedic office I used for my arms. > > Long story short, I was seen the next day, had MRI and was diagnosed with spinal stenosis involving the L4-L5 vertebrae, some spinal arthritis. I tried 3 rounds of spinal injections which didn't help and knew I need surgery as I couldn't exist the way I was in the horrible pain I was in and it was getting worse. > I saw several other spinal docs for other opinions and returned to the original doc and had the surgery done in mid June. I was in and out of the hospital in less than 12 hours, was up walking outside around my yard 2 days later and have never regretted the surgery. I'm doing fine now and have my life back > > My recommendations to you is this. > Get the results of the MRI from your doc. Get the radiologist report of the MRI, the xrays you have had and the readings and get the MRI pics and take them with you and go ASAP to a sports medicine orthopedic spine specialist. > > The reason I say sports medicine orthopedic doc, and not a neurosurgeon or plain orthopedic spinal surgeon is because of the experiences I have had researching and seeing other docs about myself. > > The end conclusion after seeing 8 docs in the top hospitals in Boston is this. > Sports medicine orthopedic docs are the most up to date on any and all new procedures than the others. They are the ones that will do the least cutting necessary to do surgery. The neurosurgeon wanted to do at least a 4-6 inch incision, the ortho docs wanted to do at the very least a 3-5 inch incision, the sports medicine ortho docs both said they would start with a 1 inch incision and only enlarge it if it was needed and would only enlarge by 1/2 inch at a time. > Sports medicine ortho docs understand all the mechanics of surgery and the complications that come with cutting muscles and the loss of function it can create. The others appear to be more knife happy and just want to do the surgery that is easier for them and not the patient. > > 6 of the docs told me that it was impossible to do any type of spinal surgery with a 1 inch incision and my recoup would be very long. They wanted me to wait till the stenosis was much farther along in some kind of number process they use that appears on a chart of some kind. I just looked at them and said " you have to be nuts, I'm in agony, can't walk more than 50 feet, am dragging my leg, can't bend it and look like I am recovering from a stroke and you want me to wait till it's worse than this? " > There response was yes. > > The 2 sports medicine ortho docs, advised not waiting till it was like that, Needless suffering for a patient, much easier to do now for the patient before it is much more serious and complicated and easier for the doc to do as well. > > That settled it for me and I went back to my original doc and had it done. I had a 1 inch incision with 1 stitch. Surgery took about 2 1/2 hours. Was home that night, and I came home without the pain in my leg. I walked like a normal person again and I was standing upright right away. The post op pain hurt, but believe me when I say it was a piece of cake compared the the horrible pain I had going in to the hospital. > > You need a specialist to treat your spinal problems and by the way, my xrays where not normal. They showed some of the stenosis problems but the radiologist didn't read them correctly. > > Please get yourself to a sports medicine doc ASAP and start treatment for any and all of the problems you have before it gets any worse. > > You are right that spinal stenosis doesn't get better. The spinal injections are a temporary fix that may or may not kill the pain. It won't make the stenosis any better. Eventually the injections stop working and you can only get so many of them in a year before it's unsafe. I think it's 3. At the point when the injections stop working the only alternaltive is surgery. As the time passes you get older and older and it becomes more complicated to have the surgery because of increasing age, other medical problems that develop and healing takes longer because of age and the stenosis has gotten worse. > > My doc says I recovered as quickly as I did because of my age, I'm only 55, didn't wait till I was all but in a wheelchair, did everything I was supposed to do, including all the physical therapy etc. and I was confident that I made the right choice in my mind both to have the surgery and confidence in the doc. > > Depending on where you live, I can recommend my doc to you, but please get yourself with all the xrays and MRI stuff to a sports medicine doc right away. > > Fran > > Hall <writerhall@...> wrote: > I'm new here and didn't quite want to post until I'd > been positively diagnosed with spinal stenosis - but > my pain is getting worse and worse. I'm just at the > beginning stages of getting this whole thing diagnosed > and looked at. My story: I have had lower back pain > for as long as I can remember. I'm 56 now. but in the > last couple of years the back pain is mostly gone - > but the pain is now in my legs. Anything in a standing > position and I'm in pain - back of my legs. My legs > feel like lumps of cement when I walk. > > I've had an X-ray which shows osteoarthtitis of the > spine, and some vertebrae problems. I had the X-ray, > because a bone density test revealed severe > osteoporosis. > > My dr. said it looked like stenosis, and sent me to a > physio who says my symptoms are 'classic spinal > stenosis.' I had an MRI a week ago to try to get a > handle on this this,and will see my dr about it this > week. I don't know what that next step is. Surgery? Is > that the only option? > > But what I do know, is that since this summer, I can't > walk maybe more than five - ten minutes without pain > in my legs. And this is from a person who used to run > on a regular basis - and in my younger years won > races! I then shifted to walking and up until very > recently didnot survive without my 45 minute walk > every morning. It's what refreshed me and sent me on > my way. I can't do that now. > > Although for the time being I CAN a bicycle, and am > trying to do that on a regular basis. Plus I do Yoga - > but some of the postures, anything bedning backwards > is severe and awfully pain. But some of the postures > actually feel good and I think help. > > My take on the thing is that this is progressive and > won't get any better. This has been SO slow coming on > with me that I hardly recognized it. a year ago, for > example, the back of my legs hurt some of the time, > but not all the time. And if I 'walked through it' it > got better. Now, it only get worse. > > Plus, Im finding the things I used to enjoy painful > and tiring. I went Christmas shopping the other > morning with my husband for things we have to send > overseas. Well, even leaning onto the shopping cart, > after a while hurt, and it was like I needed all > afternoon and evening to recuperate. I'm much more > tired thtn I used to be. Simple things exhaust me, > plus I've noticved in the last month when I sit down > to releve the pain in my legs, it doesn't relieve > right away. It takes a few minutes. > > I guess I'm writing this because I'm scared, and hope > I make right choices and do the right things. Plus, do > these symptoms sound like yours? > > Linni > > __________________________________________________________ > Cheap talk? > Check out Messenger's low PC-to-Phone call rates. > http://voice. > > > > > > --------------------------------- > Check out the all-new beta - Fire up a more powerful email and get things done faster. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Dear Linni and Fran: I wish I had found this support group five years ago...the first time my leg went numb after walking my Airedale about a mile...I have tried Pilates, yoga, massage, acupuncture, etc. And spent a fortune on orthodics and shoes. I have talked with chiroprators, ortho, neuro, surgeons and even when told that I have scolosis, stenosis and spondolothesis, I kept looking for another answer. Finally the neuro surgeon said, yep, you've got it and it'll take a 7 hour surgery and three month body " shell " recovery, I asked what else I could do. I started water aroebics, which I adore, because there was not much pain and I felt so strong...some improvement and some sense of self esteem at being able to feel strong again. I have admitted that I am aging at 64, but my head and heart feel about 38. The worse thing is how life gets put on hold...I haven't been able to walk my dog, run errands. I had my own boutique for twenty five years,with lots of standing and walking. For the past three or four years, I just sat on my butt and did eBay...and gained weight, hid out, lonesome, in pain and now I know, very depressed. The constant pain and anxiety about what was going on in my life have been the worst. In the six month interval from final diagnosis in Feb. by neuro surgeon whom I admire and respect, I went back, thinking that the fusion and caging were my answer, knowing that I would go crazy with three months in the plastic shell, body cast. He said, " here, look at this. " it was the information on the x stop. I figured I didn't have anything to lose since it can be removed if it turns out that I will need the " big surgery " later on... That was 4 plus weeks ago. There is still some pain and numbness on walking, but he says it is inflamation and to wait...I will start rehab in two more weeks... already back walking in the pool. Able to do everything...huge improvement and finally, I am thinking about what I've missed. Self esteem, anger, fear, anxiety, well, I realize how very miserable I've been. It is wonderful to communicate with vital, alive people who are searching for ways to improve. Knowledge really matters and thank God for the Internet and all this infomation. good Luck, Carolyn--- In Spinal Stenosis Treatment , Fran Barron <sunhineagain@...> wrote: > > Hi Linni, > > Oh yes, you sound just like me, that is what I was until last June. My symptoms where so meaningless to me. Occasional pain in my legs while walking, and I walked 4 miles a day, 4 days a week. It was so infrequent that I didn't think much of it other than, yup, lady your getting older. I found occasional sore legs after being on them all day, but so infrequent, I just thought the same thing. Then I got a case of fashiitis in my right foot. had it treated and got good shoe inserts and was fine. had surgery for a tendon problem in my right arm (long storyI but taken care of. Then found sporadic difficulty raising my right leg to go up a very steep front step. So sporadic that even my primary said I would need to be seen when it happened to try and figure it out. > > Then last January 2006 I found myself in a lot of pain on my right rear end when I got up out of bed in the morning, about once a week. So bad that I couldn't bend to raise the toilet seat or wipe myself, but it was only once a week and lasted about 10 minutes. Thought it strange but went on with my life. That is until mid February 2006, when I couldn't get out of bed. The pain was excruciating on my right side from my buttocks all the way down my right leg to my foot and back up again. I was screaming in pain and my hubby had to help me get up by messaging the area and it took me an hour of the worst pain I ever had to get out of bed. Once up and out of bed and I sat for a short time I could get around but the pain was really bad and I was limping terribly and couldn't stand up straight. All new. > Saw the doc covering for my primary who had immediate xrays done and supposedly they where normal. He said I needed to see a neurosurgeon to determine if I needed an MRI because it was nerve pain I was getting. > The wait to be seen was 6 weeks and new I couldn't go on this way so came home and called the sports medicine orthopedic office I used for my arms. > > Long story short, I was seen the next day, had MRI and was diagnosed with spinal stenosis involving the L4-L5 vertebrae, some spinal arthritis. I tried 3 rounds of spinal injections which didn't help and knew I need surgery as I couldn't exist the way I was in the horrible pain I was in and it was getting worse. > I saw several other spinal docs for other opinions and returned to the original doc and had the surgery done in mid June. I was in and out of the hospital in less than 12 hours, was up walking outside around my yard 2 days later and have never regretted the surgery. I'm doing fine now and have my life back > > My recommendations to you is this. > Get the results of the MRI from your doc. Get the radiologist report of the MRI, the xrays you have had and the readings and get the MRI pics and take them with you and go ASAP to a sports medicine orthopedic spine specialist. > > The reason I say sports medicine orthopedic doc, and not a neurosurgeon or plain orthopedic spinal surgeon is because of the experiences I have had researching and seeing other docs about myself. > > The end conclusion after seeing 8 docs in the top hospitals in Boston is this. > Sports medicine orthopedic docs are the most up to date on any and all new procedures than the others. They are the ones that will do the least cutting necessary to do surgery. The neurosurgeon wanted to do at least a 4-6 inch incision, the ortho docs wanted to do at the very least a 3-5 inch incision, the sports medicine ortho docs both said they would start with a 1 inch incision and only enlarge it if it was needed and would only enlarge by 1/2 inch at a time. > Sports medicine ortho docs understand all the mechanics of surgery and the complications that come with cutting muscles and the loss of function it can create. The others appear to be more knife happy and just want to do the surgery that is easier for them and not the patient. > > 6 of the docs told me that it was impossible to do any type of spinal surgery with a 1 inch incision and my recoup would be very long. They wanted me to wait till the stenosis was much farther along in some kind of number process they use that appears on a chart of some kind. I just looked at them and said " you have to be nuts, I'm in agony, can't walk more than 50 feet, am dragging my leg, can't bend it and look like I am recovering from a stroke and you want me to wait till it's worse than this? " > There response was yes. > > The 2 sports medicine ortho docs, advised not waiting till it was like that, Needless suffering for a patient, much easier to do now for the patient before it is much more serious and complicated and easier for the doc to do as well. > > That settled it for me and I went back to my original doc and had it done. I had a 1 inch incision with 1 stitch. Surgery took about 2 1/2 hours. Was home that night, and I came home without the pain in my leg. I walked like a normal person again and I was standing upright right away. The post op pain hurt, but believe me when I say it was a piece of cake compared the the horrible pain I had going in to the hospital. > > You need a specialist to treat your spinal problems and by the way, my xrays where not normal. They showed some of the stenosis problems but the radiologist didn't read them correctly. > > Please get yourself to a sports medicine doc ASAP and start treatment for any and all of the problems you have before it gets any worse. > > You are right that spinal stenosis doesn't get better. The spinal injections are a temporary fix that may or may not kill the pain. It won't make the stenosis any better. Eventually the injections stop working and you can only get so many of them in a year before it's unsafe. I think it's 3. At the point when the injections stop working the only alternaltive is surgery. As the time passes you get older and older and it becomes more complicated to have the surgery because of increasing age, other medical problems that develop and healing takes longer because of age and the stenosis has gotten worse. > > My doc says I recovered as quickly as I did because of my age, I'm only 55, didn't wait till I was all but in a wheelchair, did everything I was supposed to do, including all the physical therapy etc. and I was confident that I made the right choice in my mind both to have the surgery and confidence in the doc. > > Depending on where you live, I can recommend my doc to you, but please get yourself with all the xrays and MRI stuff to a sports medicine doc right away. > > Fran > > Hall <writerhall@...> wrote: > I'm new here and didn't quite want to post until I'd > been positively diagnosed with spinal stenosis - but > my pain is getting worse and worse. I'm just at the > beginning stages of getting this whole thing diagnosed > and looked at. My story: I have had lower back pain > for as long as I can remember. I'm 56 now. but in the > last couple of years the back pain is mostly gone - > but the pain is now in my legs. Anything in a standing > position and I'm in pain - back of my legs. My legs > feel like lumps of cement when I walk. > > I've had an X-ray which shows osteoarthtitis of the > spine, and some vertebrae problems. I had the X-ray, > because a bone density test revealed severe > osteoporosis. > > My dr. said it looked like stenosis, and sent me to a > physio who says my symptoms are 'classic spinal > stenosis.' I had an MRI a week ago to try to get a > handle on this this,and will see my dr about it this > week. I don't know what that next step is. Surgery? Is > that the only option? > > But what I do know, is that since this summer, I can't > walk maybe more than five - ten minutes without pain > in my legs. And this is from a person who used to run > on a regular basis - and in my younger years won > races! I then shifted to walking and up until very > recently didnot survive without my 45 minute walk > every morning. It's what refreshed me and sent me on > my way. I can't do that now. > > Although for the time being I CAN a bicycle, and am > trying to do that on a regular basis. Plus I do Yoga - > but some of the postures, anything bedning backwards > is severe and awfully pain. But some of the postures > actually feel good and I think help. > > My take on the thing is that this is progressive and > won't get any better. This has been SO slow coming on > with me that I hardly recognized it. a year ago, for > example, the back of my legs hurt some of the time, > but not all the time. And if I 'walked through it' it > got better. Now, it only get worse. > > Plus, Im finding the things I used to enjoy painful > and tiring. I went Christmas shopping the other > morning with my husband for things we have to send > overseas. Well, even leaning onto the shopping cart, > after a while hurt, and it was like I needed all > afternoon and evening to recuperate. I'm much more > tired thtn I used to be. Simple things exhaust me, > plus I've noticved in the last month when I sit down > to releve the pain in my legs, it doesn't relieve > right away. It takes a few minutes. > > I guess I'm writing this because I'm scared, and hope > I make right choices and do the right things. Plus, do > these symptoms sound like yours? > > Linni > > __________________________________________________________ > Cheap talk? > Check out Messenger's low PC-to-Phone call rates. > http://voice. > > > > > > --------------------------------- > Check out the all-new beta - Fire up a more powerful email and get things done faster. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2006 Report Share Posted November 11, 2006 Hi Carolyn, I had looked into the x-stop and the cost. My insurance wouldn't pay for it and I didn't have the money to afford it myself. then I was advised by info sent to by my doc, that the surgery he was going to perform was a better option for me than the x-stop. Isn't it amazing to think back on what life was like prior to surgery and what it is afterwards? It really wasn't living was it? It was just a pure existence of horrible pain and suffering. The fact that even a few months of life was at a standstill is hard to even think of now, after being able to function pretty much as you did prior to this all starting. To think that last June, I all but needed a wheelchair to get into the hospital and even though they wheeled me out to the car to go home, I actually got out of it myself, got in the car and lifted my own leg into it was amazing to me. I had a ride home without pain and cried all the way in, all in a matter of about 12 hours total. 5 months ago, I couldn't stand for more than 5-10 minutes. 3 weeks ago I did a craft show and was up and down and on my feet for over 7 hours. Yes, my legs where sore when I got home, but it was a nice kind of sore. Muscle sore from muscles that haven't been used like that in some time. By later that night I was fine. today I spent 6 hours checking out other craft shows, was in and out of a car and it felt like I had just been released from prison or something. Come to think of it, that's kind of like what it was before the surgery. I'm so glad that both of us are doing well with the choices that we made and I urge others to get more than one opnion before just deciding to just listen to one doc and what the advise is. there are options out there for those of us suffering with spinal stenosis and other spinal problesm. One size does not fit all with these problems and not all docs are aware of different options available. Some don't recommend certain procedures because they aren't familiar with them or don't know how to do them. A good doc will do what mine did. Explore with the patient different options and find out if they are a candidate for them or not. One of the most important things I learned in getting other opinions is that if the doc tells you that this is the only way and nothing else will work and won't listen to other possibilities, run for your life out of the docs office and don't look back. The only time to look back and listen is if you keep getting the same answers after several different docs tell you the same thing and none of them are in the same office or work together. That isn't another opinion. Another thing is to have a doctor that you trust and listens to you and all your concerns, doesn't brush you off with all your questions no matter how trivial they are, even if you ask the same ones over and over again. Also, always bring another person with you to every appointment and a always have a list of questions from everyone that is with you. Ask all of them and if the doc gets annoyed or complains or something like that or doesn't want other people with you, then end the appointment and leave. My doc was wonderful. I had hubby and a friend that is a nurse with me all the time. It didn't bother him in the least. He would joke about it and say things like "OK it's party time in here. Just remember folks, questions from one person at a time, this is not a political debate going on in here. But please pipe in one at a time if you don't like the answer, don't understand the answer, want more detail or anything else. And don't worry if you ask the same question more than once.". That in itself made love and trust the doc more than anything else. When my daughter found she had a couple of questions that hadn't been asked, I called the doc and he had no problem having her ask them as long as she wrote down the answers and understood them and made sure the "rest of the party" new the question and got all the answers. As for the hold on life, I'm so glad mine was only a few months, but it seemed like an eternity. Depression isn't even the word for it. I kept thinking that if I had to live like this for the rest of my life, I would end it ASAP. My doc new how much I was suffering and agreed it was needless and a horrible way to live. Life looks wonderful now, and though I may not be able to do everything in the world that I used to do, that's fine with me. Sometimes it does bother me that I will never be able to use the snowblower again, but hey, if that's the least of it that's fine with me. I don't have the pain any more. Keep us posted on how you are doing. I'll do the same. FranCarolyn Fineran <xstopped@...> wrote: Dear Linni and Fran: I wish I had found this support group five years ago...the first timemy leg went numb after walking my Airedale about a mile...I have triedPilates, yoga, massage, acupuncture, etc. And spent a fortune onorthodics and shoes. I have talked with chiroprators, ortho, neuro,surgeons and even when told that I have scolosis, stenosis andspondolothesis, I kept looking for another answer. Finally the neurosurgeon said, yep, you've got it and it'll take a 7 hour surgery andthree month body "shell" recovery, I asked what else I could do.I started water aroebics, which I adore, because there was not muchpain and I felt so strong...some improvement and some sense of selfesteem at being able to feel strong again. I have admitted that I amaging at 64, but my head and heart feel about 38. The worse thing is how life gets put on hold...I haven't been able towalk my dog, run errands. I had my own boutique for twenty fiveyears,with lots of standing and walking. For the past three or fouryears, I just sat on my butt and did eBay...and gained weight, hidout, lonesome, in pain and now I know, very depressed. The constantpain and anxiety about what was going on in my life have been the worst.In the six month interval from final diagnosis in Feb. by neurosurgeon whom I admire and respect, I went back, thinking that thefusion and caging were my answer, knowing that I would go crazy withthree months in the plastic shell, body cast. He said, "here, look atthis." it was the information on the x stop. I figured I didn't haveanything to lose since it can be removed if it turns out that I willneed the "big surgery" later on... That was 4 plus weeks ago. Thereis still some pain and numbness on walking, but he says it isinflamation and to wait...I will start rehab in two more weeks...already back walking in the pool. Able to do everything...hugeimprovement and finally, I am thinking about what I've missed. Selfesteem, anger, fear, anxiety, well, I realize how very miserable I'vebeen. It is wonderful to communicate with vital, alive people who aresearching for ways to improve. Knowledge really matters and thank Godfor the Internet and all this infomation. good Luck, Carolyn> I'm new here and didn't quite want to post until I'd> been positively diagnosed with spinal stenosis - but> my pain is getting worse and worse. I'm just at the> beginning stages of getting this whole thing diagnosed> and looked at. My story: I have had lower back pain> for as long as I can remember. I'm 56 now. but in the> last couple of years the back pain is mostly gone -> but the pain is now in my legs. Anything in a standing> position and I'm in pain - back of my legs. My legs> feel like lumps of cement when I walk.> > I've had an X-ray which shows osteoarthtitis of the> spine, and some vertebrae problems. I had the X-ray,> because a bone density test revealed severe> osteoporosis. > > My dr. said it looked like stenosis, and sent me to a> physio who says my symptoms are 'classic spinal> stenosis.' I had an MRI a week ago to try to get a> handle on this this,and will see my dr about it this> week. I don't know what that next step is. Surgery? Is> that the only option?> > But what I do know, is that since this summer, I can't> walk maybe more than five - ten minutes without pain> in my legs. And this is from a person who used to run> on a regular basis - and in my younger years won> races! I then shifted to walking and up until very> recently didnot survive without my 45 minute walk> every morning. It's what refreshed me and sent me on> my way. I can't do that now. > > Although for the time being I CAN a bicycle, and am> trying to do that on a regular basis. Plus I do Yoga -> but some of the postures, anything bedning backwards> is severe and awfully pain. But some of the postures> actually feel good and I think help. > > My take on the thing is that this is progressive and> won't get any better. This has been SO slow coming on> with me that I hardly recognized it. a year ago, for> example, the back of my legs hurt some of the time,> but not all the time. And if I 'walked through it' it> got better. Now, it only get worse. > > Plus, Im finding the things I used to enjoy painful> and tiring. I went Christmas shopping the other> morning with my husband for things we have to send> overseas. Well, even leaning onto the shopping cart,> after a while hurt, and it was like I needed all> afternoon and evening to recuperate. I'm much more> tired thtn I used to be. Simple things exhaust me,> plus I've noticved in the last month when I sit down> to releve the pain in my legs, it doesn't relieve> right away. It takes a few minutes. > > I guess I'm writing this because I'm scared, and hope> I make right choices and do the right things. Plus, do> these symptoms sound like yours?> > Linni> > __________________________________________________________> Cheap talk?> Check out Messenger's low PC-to-Phone call rates.> http://voice.> > > > > > ---------------------------------> Check out the all-new beta - Fire up a more powerfulemail and get things done faster.> Everyone is raving about the all-new beta. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Dear Fran: Easy to see why you chose " sunshine again " for your name. Being able to stand on your own two feet means more than we ever realized. Thanks for information, especially the part about each person is responsible for finding their own answers. It is a full time job! Best, Carolyn > > I'm new here and didn't quite want to post until I'd > > been positively diagnosed with spinal stenosis - but > > my pain is getting worse and worse. I'm just at the > > beginning stages of getting this whole thing diagnosed > > and looked at. My story: I have had lower back pain > > for as long as I can remember. I'm 56 now. but in the > > last couple of years the back pain is mostly gone - > > but the pain is now in my legs. Anything in a standing > > position and I'm in pain - back of my legs. My legs > > feel like lumps of cement when I walk. > > > > I've had an X-ray which shows osteoarthtitis of the > > spine, and some vertebrae problems. I had the X-ray, > > because a bone density test revealed severe > > osteoporosis. > > > > My dr. said it looked like stenosis, and sent me to a > > physio who says my symptoms are 'classic spinal > > stenosis.' I had an MRI a week ago to try to get a > > handle on this this,and will see my dr about it this > > week. I don't know what that next step is. Surgery? Is > > that the only option? > > > > But what I do know, is that since this summer, I can't > > walk maybe more than five - ten minutes without pain > > in my legs. And this is from a person who used to run > > on a regular basis - and in my younger years won > > races! I then shifted to walking and up until very > > recently didnot survive without my 45 minute walk > > every morning. It's what refreshed me and sent me on > > my way. I can't do that now. > > > > Although for the time being I CAN a bicycle, and am > > trying to do that on a regular basis. Plus I do Yoga - > > but some of the postures, anything bedning backwards > > is severe and awfully pain. But some of the postures > > actually feel good and I think help. > > > > My take on the thing is that this is progressive and > > won't get any better. This has been SO slow coming on > > with me that I hardly recognized it. a year ago, for > > example, the back of my legs hurt some of the time, > > but not all the time. And if I 'walked through it' it > > got better. Now, it only get worse. > > > > Plus, Im finding the things I used to enjoy painful > > and tiring. I went Christmas shopping the other > > morning with my husband for things we have to send > > overseas. Well, even leaning onto the shopping cart, > > after a while hurt, and it was like I needed all > > afternoon and evening to recuperate. I'm much more > > tired thtn I used to be. Simple things exhaust me, > > plus I've noticved in the last month when I sit down > > to releve the pain in my legs, it doesn't relieve > > right away. It takes a few minutes. > > > > I guess I'm writing this because I'm scared, and hope > > I make right choices and do the right things. Plus, do > > these symptoms sound like yours? > > > > Linni > > > > __________________________________________________________ > > Cheap talk? > > Check out Messenger's low PC-to-Phone call rates. > > http://voice. > > > > > > > > > > > > --------------------------------- > > Check out the all-new beta - Fire up a more powerful > email and get things done faster. > > > > > > > > > --------------------------------- > Everyone is raving about the all-new beta. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2006 Report Share Posted November 12, 2006 Dear Fran: Easy to see why you chose " sunshine again " for your name. Being able to stand on your own two feet means more than we ever realized. Thanks for information, especially the part about each person is responsible for finding their own answers. It is a full time job! Best, Carolyn > > I'm new here and didn't quite want to post until I'd > > been positively diagnosed with spinal stenosis - but > > my pain is getting worse and worse. I'm just at the > > beginning stages of getting this whole thing diagnosed > > and looked at. My story: I have had lower back pain > > for as long as I can remember. I'm 56 now. but in the > > last couple of years the back pain is mostly gone - > > but the pain is now in my legs. Anything in a standing > > position and I'm in pain - back of my legs. My legs > > feel like lumps of cement when I walk. > > > > I've had an X-ray which shows osteoarthtitis of the > > spine, and some vertebrae problems. I had the X-ray, > > because a bone density test revealed severe > > osteoporosis. > > > > My dr. said it looked like stenosis, and sent me to a > > physio who says my symptoms are 'classic spinal > > stenosis.' I had an MRI a week ago to try to get a > > handle on this this,and will see my dr about it this > > week. I don't know what that next step is. Surgery? Is > > that the only option? > > > > But what I do know, is that since this summer, I can't > > walk maybe more than five - ten minutes without pain > > in my legs. And this is from a person who used to run > > on a regular basis - and in my younger years won > > races! I then shifted to walking and up until very > > recently didnot survive without my 45 minute walk > > every morning. It's what refreshed me and sent me on > > my way. I can't do that now. > > > > Although for the time being I CAN a bicycle, and am > > trying to do that on a regular basis. Plus I do Yoga - > > but some of the postures, anything bedning backwards > > is severe and awfully pain. But some of the postures > > actually feel good and I think help. > > > > My take on the thing is that this is progressive and > > won't get any better. This has been SO slow coming on > > with me that I hardly recognized it. a year ago, for > > example, the back of my legs hurt some of the time, > > but not all the time. And if I 'walked through it' it > > got better. Now, it only get worse. > > > > Plus, Im finding the things I used to enjoy painful > > and tiring. I went Christmas shopping the other > > morning with my husband for things we have to send > > overseas. Well, even leaning onto the shopping cart, > > after a while hurt, and it was like I needed all > > afternoon and evening to recuperate. I'm much more > > tired thtn I used to be. Simple things exhaust me, > > plus I've noticved in the last month when I sit down > > to releve the pain in my legs, it doesn't relieve > > right away. It takes a few minutes. > > > > I guess I'm writing this because I'm scared, and hope > > I make right choices and do the right things. Plus, do > > these symptoms sound like yours? > > > > Linni > > > > __________________________________________________________ > > Cheap talk? > > Check out Messenger's low PC-to-Phone call rates. > > http://voice. > > > > > > > > > > > > --------------------------------- > > Check out the all-new beta - Fire up a more powerful > email and get things done faster. > > > > > > > > > --------------------------------- > Everyone is raving about the all-new beta. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2006 Report Share Posted December 4, 2006 welcome, david, thanks for sharing your story. glad you found out about lyme as soon as you did--it's a great adventure :-o kendra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2006 Report Share Posted December 5, 2006 I am new to this group and just want to say my GP has given up on me. He tried doxycycline for 15 days and I still have pins and needles in my face and head. Last visit he gave me Carbamazepine for seizures and said come back in a month. So am going to call a LLMD near me and get an appointment. -- How can we live in a country that has a Lyme epidemic going on, yet no one knows what to look for, and very few know how to treat long term Lyme? Why are doctors so afraid of saying you have Lyme disease even if your tests are negative? Why can't they just treat your symptoms? Dave's WEB SITES: Cambridge Springs Web site: http://freepages.history.rootsweb.com/%7Ecambridgesprings/main.html Ham Radio Web site: http://www.qsl.net/k3asi My wifes work Web site: http://home.earthlink.net/~k3asi/ Quote Link to comment Share on other sites More sharing options...
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