Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 I want the new Members to be aware that there is no proven way to prevent Retethering as of yet. There are Dr.'s that are trying different things, but nothing has been proven completely effective as of yet. I just don't want anybody to get the wrong idea. Lastly, there are those that are lucky enough not to have a Symptomatic Retether...........even though, at times, it doesn't seem that way. Retethering and Symptomatic Retethering are 2 different things, when you get right down to it. Me Nebraska, USA mymocha@... did anything to help prevent it from > re-tethering. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.427 / Virus Database: 240 - Release Date: 12/6/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2002 Report Share Posted December 15, 2002 I want the new Members to be aware that there is no proven way to prevent Retethering as of yet. There are Dr.'s that are trying different things, but nothing has been proven completely effective as of yet. I just don't want anybody to get the wrong idea. Lastly, there are those that are lucky enough not to have a Symptomatic Retether...........even though, at times, it doesn't seem that way. Retethering and Symptomatic Retethering are 2 different things, when you get right down to it. Me Nebraska, USA mymocha@... did anything to help prevent it from > re-tethering. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.427 / Virus Database: 240 - Release Date: 12/6/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2003 Report Share Posted May 5, 2003 I believe that increased Sensitivity can be a Symptom. However, that area is just Sensitive to me anyway........I think just because of the Surgeries. Yes, I have had Spinal Fusion, with Rods. I really don't know what my Degree of Curve was when I went in to have the Fusion. I can probably safely say it was above 70 Degrees. When I had my last Detethering, they had to remove some of the Instrumentation and Bone Fusion to get to the Tether. Just some of Brande's experience.........I hope it helps. Me Nebraska, USA mymocha@... Can tethered cord cause very sensitive skin areas??? If anyone has had rod surgery, at what 'degree' of bend were you referred for the surgery?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Chris Thanks for you email. I agree with you that doctors should be made more aware of the symptoms of SB and TCS to make an early diagnosis. To me, in retrospect, it seems very strange that it was detected when I was a lot younger. I have a very typical birthmark over the affected area and when I was a baby one of my feet turned in. My mum brought me to see the doctor about it and he referred her to a pediatric consultant. Even he failed to notice something was amiss! I had another MRI about four weeks ago and I am waiting to get feedback from my neurosurgeon. Apparently the hold up is because they are trying to track down my other scan to compare for deterioration. I can't imagine having to go through the surgery another three times. How long between each operation? and do you get any relief from the symptoms inbetween times? Thanks again. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2003 Report Share Posted May 15, 2003 Penny, Welcome to the group. I have had this surgery 4 times most recent March 21st. I don't have the same kind of sb as your son but I wouldn't think the surgery would be that different. If what they are doing is releasing the cord. For each time I have had surgery they have explained there are a lot of risks. I was told it could make things better ,worse or not help at all. My bladder is totally unhooked because I have a urostomy for my urine. I am still at a loss as to why I ended up with this and it seems everyone else caths to void urine. I thought it was because of when I had my first back surgery (1969) when they realized my bladder was still retaining urine they did the urostomy and I have worn the bag for urine. I hope the others on the list can help you with the bladder issues they all seem to have very good advice. Chris new member My son is 30. He was born w/ myelomeningocele on S1 S2. He is able to ambulate but is quite awkward. He is also mentally challanged. He has had problems with his urinary tract since birth. I was able to get control at age 14. This past year we have had trouble with leakage and just recently he suffered severe distention as the result of strictures. His urologist released them but now we have no bladder control. Apparently the tethered cord is rearing its ugly head. I have been referred to a neuro surgeon to have his cord released. I have done some research but I would like to hear something from those who have had this surgery. Thanks Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Criss What type of SB do you have? I wonder why they didn't give you a supra pubic cath. Is it very difficult to have a urostomy? Did the release of the tethered cord cause any problems with your ambulation or bowels? These are the things I am worried about. has had many surgeries on his kidneys and is legs ( he was fortunate to save his legs) and I don't want him to loose his ability to walk. What are some of the risks? Thanks Penny new member My son is 30. He was born w/ myelomeningocele on S1 S2. He is able to ambulate but is quite awkward. He is also mentally challanged. He has had problems with his urinary tract since birth. I was able to get control at age 14. This past year we have had trouble with leakage and just recently he suffered severe distention as the result of strictures. His urologist released them but now we have no bladder control. Apparently the tethered cord is rearing its ugly head. I have been referred to a neuro surgeon to have his cord released. I have done some research but I would like to hear something from those who have had this surgery. Thanks Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Dear Criss What type of SB do you have? I wonder why they didn't give you a supra pubic cath. Is it very difficult to have a urostomy? Did the release of the tethered cord cause any problems with your ambulation or bowels? These are the things I am worried about. has had many surgeries on his kidneys and is legs ( he was fortunate to save his legs) and I don't want him to loose his ability to walk. What are some of the risks? Thanks Penny new member My son is 30. He was born w/ myelomeningocele on S1 S2. He is able to ambulate but is quite awkward. He is also mentally challanged. He has had problems with his urinary tract since birth. I was able to get control at age 14. This past year we have had trouble with leakage and just recently he suffered severe distention as the result of strictures. His urologist released them but now we have no bladder control. Apparently the tethered cord is rearing its ugly head. I have been referred to a neuro surgeon to have his cord released. I have done some research but I would like to hear something from those who have had this surgery. Thanks Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Chris It certainly seems that the surgery is by no means a miricle cure. However if it helps improve quality of life and stop the condition progressing for a certain amount of time then I guess its worth it. I was interested in what you were saying about having children. What implications does pregnancy etc have on TCS and vice versa? I was offered some sort of genetic counselling but I didnt really feel I needed it yet. Did you have this before having children? Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Chris It certainly seems that the surgery is by no means a miricle cure. However if it helps improve quality of life and stop the condition progressing for a certain amount of time then I guess its worth it. I was interested in what you were saying about having children. What implications does pregnancy etc have on TCS and vice versa? I was offered some sort of genetic counselling but I didnt really feel I needed it yet. Did you have this before having children? Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Chris It certainly seems that the surgery is by no means a miricle cure. However if it helps improve quality of life and stop the condition progressing for a certain amount of time then I guess its worth it. I was interested in what you were saying about having children. What implications does pregnancy etc have on TCS and vice versa? I was offered some sort of genetic counselling but I didnt really feel I needed it yet. Did you have this before having children? Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Emma, If you learn anything from all this it is that it is very important to keep track of where you records and pictures are. I went through 2 years of trying to get through to people that this wasn't something new that it was something I had had for a long time the problem was I hadn't had to see anyone for it in twenty years. You see I had my first sb surgery at age6 and six months later they did the ostomy for the urine I seem to be about the only one on the list that doesn't cath or have bladder problems but I do deal with Kidney stones and uti's. As far as my sb I was good untill age 18 and I had another surgery because of pulling up my spine and trouble walking and bad headaches. Theydid a partial detether then and 3 years later again. I had also carried 2 children in this span of time . My nsg at the time had told me no more. I had the same nsg for all 3 of those surgeries on my back. I was never symptom free but my symptoms were light other than the kidney trouble. It had been 15 years since I had seen a nsg when I started having serious problems again and They were worse than I had ever dealt with. By the time I had found someone who could deal with it he thought it might be to late to fix. He was straight with me about everything that was happening to me and I really appreciated that. He had also explained that I had never had a full detether. So he did the lamenectomy and totally removed the Lipoma (fatty mass) that was tethering my cord. I feel like a new person and he is surprised how well things are going. I'm not sure how long it's going to last but I will take what I can get. LOL I also had two other children since the last surgery 20 years ago so maybe that is what stirred things up. So to answer your question the times varied in between my surgeries but I did get relief from each one. I know everybody is different and if you read other people on the list stories you will soon learn that. Chris Re: New member Chris Thanks for you email. I agree with you that doctors should be made more aware of the symptoms of SB and TCS to make an early diagnosis. To me, in retrospect, it seems very strange that it was detected when I was a lot younger. I have a very typical birthmark over the affected area and when I was a baby one of my feet turned in. My mum brought me to see the doctor about it and he referred her to a pediatric consultant. Even he failed to notice something was amiss! I had another MRI about four weeks ago and I am waiting to get feedback from my neurosurgeon. Apparently the hold up is because they are trying to track down my other scan to compare for deterioration. I can't imagine having to go through the surgery another three times. How long between each operation? and do you get any relief from the symptoms inbetween times? Thanks again. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2003 Report Share Posted May 16, 2003 Emma, The surgery did improve the quality of my life but if you read the list there are problems too. There are many risks with the surgery. My doc put it like this It can make things better, worse or not change anything. So to me it was a chance I was willing to take. That and I felt very comfortable with my nsg. I had a neurologist that had referred me to the group of nsg's I see and she was very careful in picking the best man for the job. To me that is important when you here other doctors singing the praises of one of there people. She didn't just pick someone local she did her homework. She understood how important it was to me this time around to have someone I felt comfortable with. I had had the same nsg for the first 3 surgeries and he was great but not an option this time around. From reading others stories I have basically learned that surgery doesn't really fix bladder and bowl issues but it can give pain relief and slow down progression if all goes well. There are definitely no guarantees. As far as children go until I got pregnant for my first I didn't realize this was something that could be passed on. I had ended up with it and there was no family history. I had amniocentesis for all four of my children and found before birth that they were all perfectly healthy. So yes when it becomes time for you to have children the genetic counseling is important. They explained to me although I didn't have family history my children were high risk because I have it. I hope this answers your questions. Chris Re: New member Chris It certainly seems that the surgery is by no means a miricle cure. However if it helps improve quality of life and stop the condition progressing for a certain amount of time then I guess its worth it. I was interested in what you were saying about having children. What implications does pregnancy etc have on TCS and vice versa? I was offered some sort of genetic counselling but I didnt really feel I needed it yet. Did you have this before having children? Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Hello I am also a new member. I am 20 and one of my reasons for joining the group was to try to find someone of a similar age with the same condidtion. My tethered cord was only detected when I was 17 and I had my operation when I was 18 - now it looks as if i have retethering symptoms. What symptoms did you have that made the doctors think you might need surgery again? I am interested to know because I am facing a similar situation myself. Emma Northern Ireland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2003 Report Share Posted May 21, 2003 , Welcome!! You have come to the right place. I have had 4 detetherings most recent 8 weeks ago. My first at 6 second at 18 third at 20 and most recent at 40 that was just 8 weeks ago. I don't have the Arnold Chiari Malformation but others in the group do they will be able to send you in the right direction on what exactly it is. I have SB which was found at age 6. I also have a syrinx but doesn't at this point seem to be causing any trouble. What kind of symptoms are you having? As you can see I went 20years in between my last two surgeries so I did fair pretty well with all four all though this time things are taking longer to heal. Do you have a nsg that deals with detetherings and SB? Well just stay in touch and ask whatever we are all here to help anyway we can. Chris----- Original Message ----- From: i_didnt_do_it16 To: tetheredspinalcord Sent: Monday, May 19, 2003 11:54 PM Subject: new member Hello! I just joined the group over the weekend. I have been trying to post through e-mail but it would not go through. Well I am 17 years old from Arizona, I have Spina Bifida. I have had 2 tethered cord surgeries one at age 7 and one at age 8. I just found out a couple weeks ago that I may need surgery again. I also found out I have Arnold Chiari Malformation (im not sure what it even is yet). I joined the group to try and find people who have had multiple TC surgeries and what their outcomes were. Well I hope to talk to you all soon. ~ M.~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2003 Report Share Posted May 22, 2003 Hi , My daughter has the Chiari malformation and had decompression surgery almost 3 years ago. She had thickened filum release just the first of this year. She is only 7 or I would have her correspond with you directly :-) This group is wonderfully supportive. (I still have far more questions than answers, so mostly I lurk and try to educate myself so I can better advocate for ). When you are interested in pursuing more about Chiari malformation there is a support group for that too -- I just love the internet! WACMA (stands for world arnold chiari malformation assoc.) has several groups. I subscribe to wacma parents group and the regular adult group too. Not sure, but I think there may even be a teen group so you could talk to some other young adults like yourself. If there is anything I can answer for you about Chiari, ask away. (I know only enough to get me in trouble though, LOL). Welcome to the group. 's mom new member Hello! I just joined the group over the weekend. I have been trying to post through e-mail but it would not go through. Well I am 17 years old from Arizona, I have Spina Bifida. I have had 2 tethered cord surgeries one at age 7 and one at age 8. I just found out a couple weeks ago that I may need surgery again. I also found out I have Arnold Chiari Malformation (im not sure what it even is yet). I joined the group to try and find people who have had multiple TC surgeries and what their outcomes were. Well I hope to talk to you all soon. ~ M.~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi Norma, Welcome to the group. I hope you are able to get a handle on your pain while working with your doctors. This is a wonderful group of caring people. There is so much compassion! This group has literally saved my life on many occasions. I look forward to getting to know you. Kathleen in Calif. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Norma>> I'd like to be more active because that would help the fibro, but my weight stops me from doing that. I see the doctor tomorrow and hopefully she can come up with a plan for to get out of this cycle of discouragement.>>> Hi Norma, Welcome to the group but sorry you have pain. As far as being active...have you tried water excercise? It is easy on the joints and weight doesn't matter in the water. I joined my local YMCA and go to the arthritis aquatics class and love it! It is real easy but I know it helps me because when I can't get there for a while I feel worse. Also, if you are like me and on a fixed income, the Y has finacial help available so you pay according to your income. I hope you find something that helps and I hope you look into water excercise...it's great for your mood too! Take care, Ann in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Kary wrote: > My name is P. Kary. I am a new member of the group and this is my first post. I thought I would post a short background on myself Hello and welcome to the group. I'm sorry you need to be here, but glad that you found us. You have a lot to contend with. I wish those damn land mines had never been invented. I also wish that surgeons, who aren't 100% sure that they are going to relieve the pain, would stay away from the operating table. We have quite a few members who came out of surgery in worse shape than when they went in. Hopefully, those of us who post to the list will remember to write in paragraphs and put in spacing, so that whatever reading program you use doesn't go berserk! <grin> -- Lyndi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Welcome , Glad you found us. This is a wonderful place with caring, informative people, I look forward to more of your posts. Most importantly, as I was only 2 in 69, I would like to take this opportunity to say THANK YOU!!! As with the Iraq war now, it isn't an issue of if you agree with it. It is the men and women that we ALL need to stand behind. I truly thank you for what you gave. Blessed Be, Lori in California I am a Vietnam Veteran who is blind, partiality deaf, and have severe injuries to my right hip and leg. The injuries which I just listed werefrom a mine explosion in 1969. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Hello , Welcome to the group. It is a wonderful group of people who are very informative and compassionate. I hope you will find the community here that your looking for. I've been a member for some years now and it's been a life saver for me. Kathleen in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Welcome to the group Jen. Sorry you need to be here but happy you found us :-) I am 37 had chronic pain due to back problems...etc for about 7 years now. This is an awesome group of people with a wealth of knowledge and an unending source of inspiration. I hope to learn more of you in future posts as you will learn about us. Blessed Be, Lori in California on 11/22/04 8:13 PM, tigeethecat at tigeethecat@... wrote: Hi! I am a new member to the group so I thought I would introduce myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 good to hear from u. u have been through a lot. i have had lower back pain since i was 13 and i am 24 now. > > Cate wrote: > I am a new member. I am 35 yrs old, work full time, go to school > and take care of a 4yr.old daughter. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2004 Report Share Posted November 23, 2004 Ann wrote: <<< They say that stretching and exercising is suppose to make me feel better, but I have yet to notice any difference. >>> Hi and welcome to the group...great people here and lots of knowledge and understanding. I hope you find what you need here. I was wondering about your statement above...who is the " they " you are talking about? Have you been to doctors and do you have a diagnosis yet? If not that is the first thing you need to do and then you will have a better idea of what will help you. Don't worry so much about what your Mom has (other than to help her of course)...I'm just saying it doesn't mean that is how you will end up. Again...welcome and please feel free to ask any questions you have...someone will try and answer. Take care, the other Ann I will sign my post Ann in Pa. so we don't get confused. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2004 Report Share Posted November 24, 2004 OUCH, your way to young to have to be dealing with that. I hope you at least of some sort of pain relief. Take care, Cate tantrum23hb wrote: good to hear from u. u have been through a lot. i have had lower back pain since i was 13 and i am 24 now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2004 Report Share Posted November 25, 2004 I really think you need to see an ortho, or neuro and get an MRI done to see what is really going on. Then you and your doctor, together, can make a plan to help you out. Blessed Be, Lori in California on 11/24/04 2:18 PM, tantrum23hb at tantrum23hb@... wrote: so what do u think. Quote Link to comment Share on other sites More sharing options...
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