Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Right now I have a cardiologist, electrophysiologist, neurologist, orthopedic and now the rheumatologist. I try to have each doctor send the results to the rest but it does get complicated. So what does LLMD stand for? Is anyone in this group from CT? Maybe someone knows of a good doctor here. Â Thanks From: Sara <srobinson@...> Subject: Re: [ ] new member Date: Monday, January 4, 2010, 10:36 PM Â Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it when they see it. But most of them only know what a rheumatologist needs to know, which is pretty limited. They are by no means specialists in treating the disease -- for that, you need someone for whom Lyme is their first and only specialty. (Note that this criterion also lets out traditional infectious disease doctors, who also have a very limited view of the disease.) Lyme is multi-systemic, which means that any of these doctors is like one of the blind men feeling the elephant. They only know about the part they're grasping. LLMDs, on the other hand, see the whole elephant -- and that's why we're pretty emphatic here that you need to get yourself in to see one, and soon. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 You know when the doctor first told me that I tested positive for Lyme I thought " no way " but after hearing your stories it sounds more and more likely. The blood tests were forwarded to my cardiologist and he said that he doubts I have lyme or lupus but thats not his area. They never found a cause of the heart failure and I have alot of lyme related symptoms. Headaches, fatigue, post nasal drip for about 1 year every day, insomnia, motion sickness (I can not be in a car when someone else drives) POTS, cardiomyopathy, balance problems, swollen glands in neck (only on left side though),joint pain, muscle pain in legs and you know how it goes the list goes on. The weirdest thing lately is that I am super sensitive to smells. Do any of you have that problem? Its like I am pregnant again, I am definetly not! lol The smell of coffee and any kind of seafood makes me want to throw up.  From: on <maryha@...> Subject: Re: [ ] new member Date: Tuesday, January 5, 2010, 4:51 AM  Sara, You have a wonderful way of explaining things, as usual! I wanted to second your comment about the cardiac and POTS stuff occuring earlier in treatment. I also have been in treatment for 16 months and my cardiac symptoms were all in the first 3 months of treatment. I did relapse last August and for a couple months the lightheadedness came back for a couple weeks but the tachycardia did not return, thankfully. Its one thing to deal with all these Lyme symptoms but when it starts messing with your heart its scary! - Re: [ ] new member ://. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Lyme-literate medical doctor. This is a special group of doctors who specialize in treating chronic and late-stage Lyme. With all the people you're seeing, it may be best to start keeping your own records, with copies of all lab results and notes on every visit. Put it in a binder and take it to your various appointments, so you can share information. Odds are overwhelming that the cardiac, neurological, and joint issues will resolve with good Lyme treatment, so quite a few of these specialists could well fade to the background over the next 6-12 months once you get treatment started. Lyme disease is named after Old Lyme, CT, where it was first identified in the US. It's endemic in that state, so there are plenty of LLMDs to choose from. Sara On Jan 5, 2010, at 3:54 20PM, Chiaravalloti wrote: > Right now I have a cardiologist, electrophysiologist, neurologist, orthopedic and now the rheumatologist. I try to have each doctor send the results to the rest but it does get complicated. So what does LLMD stand for? Is anyone in this group from CT? Maybe someone knows of a good doctor here. > > Thanks > > > > > > From: Sara <srobinson@...> > Subject: Re: [ ] new member > > Date: Monday, January 4, 2010, 10:36 PM > > > > > > > Rheumatologists see plenty of Lyme arthritis, and many of them do recognize it when they see it. But most of them only know what a rheumatologist needs to know, which is pretty limited. They are by no means specialists in treating the disease -- for that, you need someone for whom Lyme is their first and only specialty. > > (Note that this criterion also lets out traditional infectious disease doctors, who also have a very limited view of the disease.) > > Lyme is multi-systemic, which means that any of these doctors is like one of the blind men feeling the elephant. They only know about the part they're grasping. LLMDs, on the other hand, see the whole elephant -- and that's why we're pretty emphatic here that you need to get yourself in to see one, and soon. > > Sara > > > > ------------------------------------ > > Lyme Disease News continually updated from thousands of sources around the > net: http://www.topix.net/health/lyme-disease > > MedWorm: The latest items on: Lyme Disease > http://tinyurl.com/23dgy8 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 , The motion sickness and smell sensitivity is very familiar to me. Before I knew it was Lyme I had this for about 6 months along with a much too strong gag reflex... Motion, certain food and, especially, chemical smells would set me into a gagging fit and sometimes vomiting too. At the time I was still riding my horse and I would often have to quickly hop off, gagging and doubled over. I used to describe it to others like it was having morning sickness all day. Such fun we Lymies have! However, I've been in treatment for 17 months and have had very few of these problems since starting treatment. - Re: [ ] new member You know when the doctor first told me that I tested positive for Lyme I thought " no way " but after hearing your stories it sounds more and more likely. The blood tests were forwarded to my cardiologist and he said that he doubts I have lyme or lupus but thats not his area. They never found a cause of the heart failure and I have alot of lyme related symptoms. Headaches, fatigue, post nasal drip for about 1 year every day, insomnia, motion sickness (I can not be in a car when someone else drives) POTS, cardiomyopathy, balance problems, swollen glands in neck (only on left side though),joint pain, muscle pain in legs and you know how it goes the list goes on. The weirdest thing lately is that I am super sensitive to smells. Do any of you have that problem? Its like I am pregnant again, I am definetly not! lol The smell of coffee and any kind of seafood makes me want to throw up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Hello all, A big thank you to those who responded to my intro. Sorry, I went out of town and didn't respond. Went to the " Pain clinic " today. Well that was a joke. Wants me to attend 7 sessions of an informational group and get cortisone shot. Can we just skip the crap and give me the shot, please? Surgery or no surgery... that is the question..... for right now I'll take the shot and keep the oxy's coming........... if it hurts bad enough I'll let them cut. Has anybody here had the neck surgery? (If I asked that before, I apologize, I've been away) Yes, they want to do the front... remove two disks and fuse the vertabrae, then later go in and do the lamenectemy from the rear.... scares the jesus out of me! I only know one other person to have this procedure and she's still in a lot of pain. Alan From: rinninwind@... <rinninwind@...> Subject: Re: New Member spinal problems Date: Saturday, December 12, 2009, 3:50 PM  Allan, Hate to be the bearer of bad news, but the surgeon is most likely telling you the truth. Do you recall if he used the term myolapathy? My husband had 3 opinions before we finally believed what the Dr's were saying. When the cervical spine is severely compressed, there is no other option than surgery. The good news is, an anterior ACDF isn't that bad of a surgery. Get more opinions before getting the laminectomy. That surgery is more painful and a couple Doctors said it was an " old fashioned " way of taking care of the problem. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Did you get a copy of your MRI? Get on the internet and research and see for yourself if it is more or less compressed than others who have avoided surgery or who have had surgery. You can request a copy and see for yourself exactly how severe the compression on your spinal cord is. I would get a copy for myself, and get a second opinion. It was mentioned that this is not something to mess around with, which is true, but it is also something that you should not rush into. I read you went to a chiropractor? Did you go to a physical therapist? I am surprised your surgeon did not recommend physical therapy before jumping straight to surgery. Once you have a fusion the chances of disks below and/or above the fusion area will likely weaken and require more surgeries in the future. I waited until I could not hardly use my left hand, my left arm muscles had weakened and I could not lift my arm over my head prior to my cervical fusion. They went through the front and all in all the surgery was not difficult to endure or recover from(compared to lower back laminectomies I have had). That was in 2007, and now the disk below my fusion has been giving me a lot of trouble and pain. Again, I will wait as long as I possibly can to have any additional surgeries and I ALWAYS get a copy of my MRI's even though my neurologist is more conservative on surgery than a lot of them are. Also, did I read where someone said they would be back at work and able to lift things after one week? That is a bunch of horse (*^^. You WILL NOT and SHOULD NOT lift thing and pull on things after one week. It takes time for a fusion to fuse and if you don't allow it to heal there is no reason to even have the surgery to start with!! You can search this forum by typing cervical fusion and read experiences of others who have also had this procedure. Good luck to you and I hope should you go through with the surgery it will brings you relief. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Hey, Alan. I've only had the laminectomy/diskectomy (no fusion). It immediately solved the nerve impingement but did nothing for my decade long pain. I was warned before surgery that it might end up that way and appreciated the honesty, which kept my expectations realistic. I know a gal who's had two anterior fusions and her recovery seemed much shorter than mine. She also recommends using cadaver bone if you are given the choice. She self-donated the first time and said that part hurt a lot more than she expected. It seems like 7 " informational group " sessions would be counterintuitive with people in enough pain that they seek out a pain clinic... why don't they offer those sessions online, or in print out form? I always hate when I'm forced to sit and learn at someone else's speed, feel like it's a waste of time. But I haven't been to Pain Management yet, so maybe they all do that? Best of luck, > > From: rinninwind@... <rinninwind@...> > Subject: Re: New Member > spinal problems > Date: Saturday, December 12, 2009, 3:50 PM > > > > > > > > Â > > > > > > > > > > Allan, > > > > Hate to be the bearer of bad news, but the surgeon is most likely telling > > you the truth. Do you recall if he used the term myolapathy? My husband > > had 3 opinions before we finally believed what the Dr's were saying. When > > the cervical spine is severely compressed, there is no other option than > > surgery. > > > > The good news is, an anterior ACDF isn't that bad of a surgery. Get more > > opinions before getting the laminectomy. That surgery is more painful and > > a couple Doctors said it was an " old fashioned " way of taking care of the > > problem. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 Thanks, Barb I will search cervical fusion. Have not been to chiropractor. Has one helped you? Alan From: Barb <ellijaygal@...> Subject: Re: New Member spinal problems Date: Saturday, January 9, 2010, 7:15 AM Â Did you get a copy of your MRI? Get on the internet and research and see for yourself if it is more or less compressed than others who have avoided surgery or who have had surgery. You can request a copy and see for yourself exactly how severe the compression on your spinal cord is. I would get a copy for myself, and get a second opinion. It was mentioned that this is not something to mess around with, which is true, but it is also something that you should not rush into. I read you went to a chiropractor? Did you go to a physical therapist? I am surprised your surgeon did not recommend physical therapy before jumping straight to surgery. Once you have a fusion the chances of disks below and/or above the fusion area will likely weaken and require more surgeries in the future. I waited until I could not hardly use my left hand, my left arm muscles had weakened and I could not lift my arm over my head prior to my cervical fusion. They went through the front and all in all the surgery was not difficult to endure or recover from(compared to lower back laminectomies I have had). That was in 2007, and now the disk below my fusion has been giving me a lot of trouble and pain. Again, I will wait as long as I possibly can to have any additional surgeries and I ALWAYS get a copy of my MRI's even though my neurologist is more conservative on surgery than a lot of them are. Also, did I read where someone said they would be back at work and able to lift things after one week? That is a bunch of horse (*^^. You WILL NOT and SHOULD NOT lift thing and pull on things after one week. It takes time for a fusion to fuse and if you don't allow it to heal there is no reason to even have the surgery to start with!! You can search this forum by typing cervical fusion and read experiences of others who have also had this procedure. Good luck to you and I hope should you go through with the surgery it will brings you relief. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2010 Report Share Posted January 9, 2010 I so hear you, ! Surely there's nothing they can tell you that they can't just print in a flier! Oh, well, you get what you get..... Alan From: mamawolf33 <vendetta33@...> Subject: Re: New Member spinal problems Date: Saturday, January 9, 2010, 7:43 AM  Hey, Alan. I've only had the laminectomy/ diskectomy (no fusion). It immediately solved the nerve impingement but did nothing for my decade long pain. I was warned before surgery that it might end up that way and appreciated the honesty, which kept my expectations realistic. I know a gal who's had two anterior fusions and her recovery seemed much shorter than mine. She also recommends using cadaver bone if you are given the choice. She self-donated the first time and said that part hurt a lot more than she expected. It seems like 7 " informational group " sessions would be counterintuitive with people in enough pain that they seek out a pain clinic... why don't they offer those sessions online, or in print out form? I always hate when I'm forced to sit and learn at someone else's speed, feel like it's a waste of time. But I haven't been to Pain Management yet, so maybe they all do that? Best of luck, > > From: rinninwind@. .. <rinninwind@ ...> > Subject: Re: New Member > spinedisorderssuppo rtgroup@gro ups.com > Date: Saturday, December 12, 2009, 3:50 PM > > > > > > > >  > > > > > > > > > > Allan, > > > > Hate to be the bearer of bad news, but the surgeon is most likely telling > > you the truth. Do you recall if he used the term myolapathy? My husband > > had 3 opinions before we finally believed what the Dr's were saying. When > > the cervical spine is severely compressed, there is no other option than > > surgery. > > > > The good news is, an anterior ACDF isn't that bad of a surgery. Get more > > opinions before getting the laminectomy. That surgery is more painful and > > a couple Doctors said it was an " old fashioned " way of taking care of the > > problem. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Sorry Alan I misunderstood. I thought you said you had been to a chiropractor. I would NEVER go to a chiropractor for a herniated disk, only a physical therapist! There are times that physical therapy does ease the pain/symptoms of my next disk that I am having problems with. Like I said before I had an anterior fusion in 2007 with hardware and the one below is starting to go out. I wish you luck and hope everything works out for you, just don't rush into surgery without trying everything else first would be my opinion. Barb > > From: Barb <ellijaygal@...> > Subject: Re: New Member > spinal problems > Date: Saturday, January 9, 2010, 7:15 AM > > > > > > > > Â > > > > > > > > > > > > Did you get a copy of your MRI? Get on the internet and research and see for yourself if it is more or less compressed than others who have avoided surgery or who have had surgery. You can request a copy and see for yourself exactly how severe the compression on your spinal cord is. I would get a copy for myself, and get a second opinion. It was mentioned that this is not something to mess around with, which is true, but it is also something that you should not rush into. I read you went to a chiropractor? Did you go to a physical therapist? I am surprised your surgeon did not recommend physical therapy before jumping straight to surgery. > > > > Once you have a fusion the chances of disks below and/or above the fusion area will likely weaken and require more surgeries in the future. I waited until I could not hardly use my left hand, my left arm muscles had weakened and I could not lift my arm over my head prior to my cervical fusion. They went through the front and all in all the surgery was not difficult to endure or recover from(compared to lower back laminectomies I have had). That was in 2007, and now the disk below my fusion has been giving me a lot of trouble and pain. Again, I will wait as long as I possibly can to have any additional surgeries and I ALWAYS get a copy of my MRI's even though my neurologist is more conservative on surgery than a lot of them are. > > > > Also, did I read where someone said they would be back at work and able to lift things after one week? That is a bunch of horse (*^^. You WILL NOT and SHOULD NOT lift thing and pull on things after one week. It takes time for a fusion to fuse and if you don't allow it to heal there is no reason to even have the surgery to start with!! > > > > You can search this forum by typing cervical fusion and read experiences of others who have also had this procedure. > > > > Good luck to you and I hope should you go through with the surgery it will brings you relief. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 I had neck fusion in 2005 . they used some of my hip bone and that area still hurts to this day. I have talked to the Dr about it and they say that the hip pain is not related to the harvest . . Funny that I didnt have it until surgery ..   Try to use a harvested bone if possible . From: mamawolf33 <vendetta33@...> Subject: Re: New Member spinal problems Date: Saturday, January 9, 2010, 10:43 AM  Hey, Alan. I've only had the laminectomy/ diskectomy (no fusion). It immediately solved the nerve impingement but did nothing for my decade long pain. I was warned before surgery that it might end up that way and appreciated the honesty, which kept my expectations realistic. I know a gal who's had two anterior fusions and her recovery seemed much shorter than mine. She also recommends using cadaver bone if you are given the choice. She self-donated the first time and said that part hurt a lot more than she expected. It seems like 7 " informational group " sessions would be counterintuitive with people in enough pain that they seek out a pain clinic... why don't they offer those sessions online, or in print out form? I always hate when I'm forced to sit and learn at someone else's speed, feel like it's a waste of time. But I haven't been to Pain Management yet, so maybe they all do that? Best of luck, > > From: rinninwind@. .. <rinninwind@ ...> > Subject: Re: New Member > spinedisorderssuppo rtgroup@gro ups.com > Date: Saturday, December 12, 2009, 3:50 PM > > > > > > > >  > > > > > > > > > > Allan, > > > > Hate to be the bearer of bad news, but the surgeon is most likely telling > > you the truth. Do you recall if he used the term myolapathy? My husband > > had 3 opinions before we finally believed what the Dr's were saying. When > > the cervical spine is severely compressed, there is no other option than > > surgery. > > > > The good news is, an anterior ACDF isn't that bad of a surgery. Get more > > opinions before getting the laminectomy. That surgery is more painful and > > a couple Doctors said it was an " old fashioned " way of taking care of the > > problem. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Thanks, Barb I hear you ,loud and clear! Alan From: Barb <ellijaygal@...> Subject: Re: New Member spinal problems Date: Sunday, January 10, 2010, 6:37 AM  Sorry Alan I misunderstood. I thought you said you had been to a chiropractor. I would NEVER go to a chiropractor for a herniated disk, only a physical therapist! There are times that physical therapy does ease the pain/symptoms of my next disk that I am having problems with. Like I said before I had an anterior fusion in 2007 with hardware and the one below is starting to go out. I wish you luck and hope everything works out for you, just don't rush into surgery without trying everything else first would be my opinion. Barb > > From: Barb <ellijaygal@ ...> > Subject: Re: New Member > spinedisorderssuppo rtgroup@gro ups.com > Date: Saturday, January 9, 2010, 7:15 AM > > > > > > > >  > > > > > > > > > > > > Did you get a copy of your MRI? Get on the internet and research and see for yourself if it is more or less compressed than others who have avoided surgery or who have had surgery. You can request a copy and see for yourself exactly how severe the compression on your spinal cord is. I would get a copy for myself, and get a second opinion. It was mentioned that this is not something to mess around with, which is true, but it is also something that you should not rush into. I read you went to a chiropractor? Did you go to a physical therapist? I am surprised your surgeon did not recommend physical therapy before jumping straight to surgery. > > > > Once you have a fusion the chances of disks below and/or above the fusion area will likely weaken and require more surgeries in the future. I waited until I could not hardly use my left hand, my left arm muscles had weakened and I could not lift my arm over my head prior to my cervical fusion. They went through the front and all in all the surgery was not difficult to endure or recover from(compared to lower back laminectomies I have had). That was in 2007, and now the disk below my fusion has been giving me a lot of trouble and pain. Again, I will wait as long as I possibly can to have any additional surgeries and I ALWAYS get a copy of my MRI's even though my neurologist is more conservative on surgery than a lot of them are. > > > > Also, did I read where someone said they would be back at work and able to lift things after one week? That is a bunch of horse (*^^. You WILL NOT and SHOULD NOT lift thing and pull on things after one week. It takes time for a fusion to fuse and if you don't allow it to heal there is no reason to even have the surgery to start with!! > > > > You can search this forum by typing cervical fusion and read experiences of others who have also had this procedure. > > > > Good luck to you and I hope should you go through with the surgery it will brings you relief. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Thanks , they are saying cadaver bone, so I guess that's what they have in mind. If you don't mind my asking, what is your overall assessment of the surgical results? Were they positive aside from the hip pain that (LOL) magically appeared afterward? Alan From: mamawolf33 <vendetta33comcast (DOT) net> Subject: Re: New Member spinedisorderssuppo rtgroup@gro ups.com Date: Saturday, January 9, 2010, 10:43 AM  Hey, Alan. I've only had the laminectomy/ diskectomy (no fusion). It immediately solved the nerve impingement but did nothing for my decade long pain. I was warned before surgery that it might end up that way and appreciated the honesty, which kept my expectations realistic. I know a gal who's had two anterior fusions and her recovery seemed much shorter than mine. She also recommends using cadaver bone if you are given the choice. She self-donated the first time and said that part hurt a lot more than she expected. It seems like 7 " informational group " sessions would be counterintuitive with people in enough pain that they seek out a pain clinic... why don't they offer those sessions online, or in print out form? I always hate when I'm forced to sit and learn at someone else's speed, feel like it's a waste of time. But I haven't been to Pain Management yet, so maybe they all do that? Best of luck, > > From: rinninwind@. .. <rinninwind@ ...> > Subject: Re: New Member > spinedisorderssuppo rtgroup@gro ups.com > Date: Saturday, December 12, 2009, 3:50 PM > > > > > > > >  > > > > > > > > > > Allan, > > > > Hate to be the bearer of bad news, but the surgeon is most likely telling > > you the truth. Do you recall if he used the term myolapathy? My husband > > had 3 opinions before we finally believed what the Dr's were saying. When > > the cervical spine is severely compressed, there is no other option than > > surgery. > > > > The good news is, an anterior ACDF isn't that bad of a surgery. Get more > > opinions before getting the laminectomy. That surgery is more painful and > > a couple Doctors said it was an " old fashioned " way of taking care of the > > problem. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2011 Report Share Posted March 27, 2011 Hello, my name is . I was diagnosed with RA in 2005 and until now have not had a very good doctor and have lived with alot of pain and discomfort and have progressed. I've just started seeing a new doctor (I have to travel away to see him) and he seems to be very good and isn't afraid to treat the RA aggressively. I also have Fibromyalgia, sjogrens and Degenerative Spine disease. I just found out this week that I also have Lupus, so I am now starting treatment for that. I've always been under the impression that Lupus was a very serious disease but the doc said it is treatable and responds well to treatment, which made me feel alot better. I wanted to join the group to find out all I could and what I have to look forward to. I currently take Methotrexate (15 mg. week), Naltrexone, Folic Acid and other meds for anxiety and depression. Any and all info you all could offer will be very much appreciated. Have a great Sunday! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Deb, Your letter somewhat confuses me as I am headed for revision surgery this month with hopes of it returning me to work. As it’s been explained to me, the surgery to relieve flatback will make it easier to sit and stand as well as make it possible for me to exercise. I get panicky about having it sometimes as now I’m able to walk and be up and about (with the help of major narcotics) and know I will have to give that up for a time after surgery. I worry that I will be made worse by the surgery and no longer be able to get pain relief with meds. I guess I could say that I’m coping well as I am, though I can’t work, think about long plane rides or stand still. However I am counting on this surgery to make some of that better. I sincerely hope it will. Best, Kate Deb Sinclair Sent: Wednesday, May 04, 2011 12:16 PM Subject: [ ] New member I am a new member to this group and quite honestly this is the only group I have ever joined and am not quite comfortable yet. I had a Harrington fusion in 1967 to correct a double curve, at the age of 13. It was performed at War Memorial Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me well, but after 30 years I started to experience symptoms I had not experienced before. The most notable was a tendancy to tip forward. Onto the web I went and much to my surprise, and perhaps dismay, there was article, after article describing what I was experiencing. Hip and leg pain, pins and needles in the foot, searing heat in the upper thigh, the drop to the knees sharp pain as the discs below and above the fusion deteriorated and the fatigue. The mind numbing fatigue from coping with these symptoms and the loss of sleep from the persistence of the symptoms, perhaps even worsening, when in a reclining position. But much to my surprise the symptoms were the least of my problems. The real frustration is finding someone who recognises this syndrome. I still to this day don't think the family physician has done much research on the subject even after presenting him with the research that I did on my own. However he has supported any request I had for referrals, and I was fortunate enough to have initially been sent to a physiotherapist that did recogize the flatback and was able to suggest names for perhaps referral. He also recognised the limitations he had in helping relieve the symptoms. So I have been to several specialists, one telling me to come back when I could no longer walk, one eager to do the surgery within a few months, and one telling me perhaps in 5 years. That being 6 years ago. I have been to a physician from whom I received an injectable cocktail to the lower spine (3x) for which there was little or no relief. I have been to a neurologist who asured me there was help when I was ready, but for now I am coping well. I did go on a CPP disability for which I was thankful to be accepted immediately. However, believe me I would much rather be working as I worked in the health field and miss it terribly. I am very interested in how this type of syndrome affects each individuals personality, or if psychologically. Certainly I could understand how easy it could be to become depressed. I am also interested in coping skills others have developed. Thanks D.S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Kate, My surgeon explained to me that the surgery would greatly Reece or eliminate the pain in my legs, and would likely also result In decreased pain in my lower back as well. For me, the pain in my legs was practically gone immediately following surgery. You can defInitely expect to be less functional didn't the initial weeks/months following the procedure. After that, the ultimate reduction in pain levels depends on a lot of factors, including whether all those years of nerve impingement caused any permanent damage to the nerve or not. No surgeon can guarantee exactly what amount of relief the surgery will give you. In my case, even though I'm only two months post-op, I can already tell that when I fully heal, I will be in much better condition than pre-surgery. I was working right up until the week before my surgery, but my ability to continue was hanging on by a thread. I have always planned to return to work following surgery, and my surgeon estimated that it would take 3-6 months. I'm at 2 months and am still on leave from work, but definitely still anticipate being able to return within the next couple of months. Have you had these kinds of discussions with your surgeon yet? While s/he won't be able to guarantee an outcome, your surgeon should be able to give you his/her best judgment as to what you can expect. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2011 Report Share Posted May 7, 2011 PS. - Sorry Deb, my member info is under Badback48. Elaine > > > > I am a new member to this group and quite honestly this is the only group I have > > ever joined and am not quite comfortable yet. I had a Harrington fusion in 1967 > > to correct a double curve, at the age of 13. It was performed at War Memorial > > Childrens Hospital, London Ontario by Dr. Kennedy. This surgery served me > > well, but after 30 years I started to experience symptoms I had not experienced > > before. The most notable was a tendancy to tip forward. Onto the web I went and > > much to my surprise, and perhaps dismay, there was article, after article > > describing what I was experiencing. Hip and leg pain, pins and needles in the > > foot, searing heat in the upper thigh, the drop to the knees sharp pain as the > > discs below and above the fusion deteriorated and the fatigue. The mind numbing > > fatigue from coping with these symptoms and the loss of sleep from the > > persistence of the symptoms, perhaps even worsening, when in a reclining > > position. But much to my surprise the symptoms were the least of my problems. > > The real frustration is finding someone who recognises this syndrome. I still to > > this day don't think the family physician has done much research on the subject > > even after presenting him with the research that I did on my own. However he has > > supported any request I had for referrals, and I was fortunate enough to have > > initially been sent to a physiotherapist that did recogize the flatback and was > > able to suggest names for perhaps referral. He also recognised the limitations > > he had in helping relieve the symptoms. So I have been to several specialists, > > one telling me to come back when I could no longer walk, one eager to do the > > surgery within a few months, and one telling me perhaps in 5 years. That being 6 > > years ago. I have been to a physician from whom I received an injectable > > cocktail to the lower spine (3x) for which there was little or no relief. I have > > been to a neurologist who asured me there was help when I was ready, but for now > > I am coping well. I did go on a CPP disability for which I was thankful to be > > accepted immediately. However, believe me I would much rather be working as I > > worked in the health field and miss it terribly. I am very interested in how > > this type of syndrome affects each individuals personality, or if > > psychologically. Certainly I could understand how easy it could be to become > > depressed. I am also interested in coping skills others have developed. > > > > Thanks D.S. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Hey, I'm also a new member from Oklahoma, I'm going back to the Mayo Clinic in June, to the doc who put the rods in 18 yrs. ago and wondered if anyone out there knows the name of great flatback surgeon in Minnesota? I'm not sure what my Doctor is going to say, when I tell him I know I have this flatback thing, but after reading everyone symptoms I know that's been my problem for the last 7 years. Thank you for putting yourselves & your stories out here for us to read, I'm finally finding out what is really happening in scoliosis world. The doctors are not telling me! Thank you and may God bless each of you. Robbie Dildine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 Hi Robbie - I don't know if you have read any posts here, but if you are still in OK, you should try & get an appointment with Dr LaGrone in Amarillo. He has been doing flatback revision surgeries for MANY years. Even if you choose another surgeon, he is a great doc to get a proper diagnosis................Kathy From: "Robbie427@..." <Robbie427@...> Sent: Wednesday, May 11, 2011 12:18 PMSubject: Re: [ ] Re: New member Hey, I'm also a new member from Oklahoma, I'm going back to the Mayo Clinic in June, to the doc who put the rods in 18 yrs. ago and wondered if anyone out there knows the name of great flatback surgeon in Minnesota? I'm not sure what my Doctor is going to say, when I tell him I know I have this flatback thing, but after reading everyone symptoms I know that's been my problem for the last 7 years. Thank you for putting yourselves & your stories out here for us to read, I'm finally finding out what is really happening in scoliosis world. The doctors are not telling me! Thank you and may God bless each of you. Robbie Dildine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2011 Report Share Posted May 11, 2011 > > Hey, I'm also a new member from Oklahoma, I'm going back to the Mayo Clinic > in June, to the doc who put the rods in 18 yrs. ago and wondered if anyone > out there knows the name of great flatback surgeon in Minnesota? I'm not > sure what my Doctor is going to say, when I tell him I know I have this > flatback thing, but after reading everyone symptoms I know that's been my > problem for the last 7 years. > > Thank you for putting yourselves & your stories out here for us to read, > I'm finally finding out what is really happening in scoliosis world. The > doctors are not telling me! > > Thank you and may God bless each of you. > Robbie Dildine > Would like to encourage you to get an opinion from Dr. LaGrone in Amarillo, Tx. He is a noted Revision Specalist. I've been seeing him for 11 years. I've had to put surgery on hold, because I had a double masteomy. Since I am now 6 years away from that bump in the road...I am more than ready to rid of the pain steming from flatback. Had the Harrinton Rod and lukey wire surgery in 1985 in OKC by Dr. S Fulton Tompkins. ....Would be more than glad to meet up with you if you do choose to visit Dr. LaGrone. I live 2 hours from Amarillo, Tx. Prayers & God's Blessings to You........Alvera White Quote Link to comment Share on other sites More sharing options...
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