Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since then I have been on steriods, first to reduce swelling and treat chemical meningitis and now for adrenal gland insufficency/low cortisol levels. I have always had a lot of joint pain, particulary in my knees and hips. I've been tested for arthritis and related disorders in the past but not for over a year. Some doctors have thought I might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly the joint pain has been put down to the chiari and other problems. Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my frustration. I hope you all have a great long weekend and that it is as pain free as possible! Cristina --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Cristina, Welcome. I have SBO, TCS, syringomyelia, arachnoiditis and osteopenia, as well (among others). I'm guessing that your doc sent your for a bone density scan. Steroids can cause your bones to become weak. If your bone density scan was normal (well, as normal as it was when you were Dx with osteopenia), it may be from your EDS. You said you are having a lot of problems with your hip popping out. I would think that is EDS related. A friend of mine had hip replacement surgery when she was about your age (due to congenital hip problems - joints malformed, etc) and she has SB also. There was a part that had worn down and was causing her hip to pop out while walking and caused a lot of pain. Maybe your hip is having similar problems except with your natural hip instead of the implant. If your rheumatologist can't help, maybe you can find an ortho or physiatrist that can help. I have constant left hip pain. None of the x-rays, bone density scan or anything has ever shown a reason for the pain. I just have to live with it. the only thing that made it better was when I went to PT and they would stretch my legs. Keeping those muscles very loose (or as loose as possible) seemeed to help. They also found that hip was slightly out of the socket (my left leg was longer and externally rotated compared to the other. When they would slip it back in (not that it was totally dislocated) to where it should sit, the pain would get much better. I wish you the best and hope there is an answer that can fix your hip pain. I know how horrible it is to live with it daily. Very distracting. At least it does not affect my mobility, since I'm in a chair. Jenn > Hello! My name is Cristina and I'm 19 years old. I've been diagnosed > with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, > osteopenia, adrenal gland insufficency/failure and postural orthostatic > hypotension. I have been decompressed (3 times) detethered and have had > numerous shunt surgeries. My last surgery was in September '07 and since > then I have been on steriods, first to reduce swelling and treat chemical > meningitis and now for adrenal gland insufficency/low cortisol levels. I > have always had a lot of joint pain, particulary in my knees and hips. I've > been tested for arthritis and related disorders in the past but not for over > a year. Some doctors have thought I might have fibromyalgia but I don't > quite fit the symptoms correctly. Mostly the joint pain has been put down to > the chiari and other problems. > Lately (the last two months or so) my left hip has been causing many > problems and is in a lot of pain. I first noticed it would pop out of place > some when I was walking and that if I walked much (five minutes maybe, > walking in a store is too much) it would be hurting very badly. It has > gotten worse and worse and is now to the point that it hurts pretty much > constantly at a dull ache and any time I walk it gets worse. About two weeks > ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes > of which I spent sitting in a chair at the front of the store. Afterwards my > left hip was hurting so badly I was almost in tears. When we got home I > could hardly put weight on my leg. This lasted for over a week and even when > I was not walking the pain was worse. This is not the first time that I have > had a hard time putting weight on my leg after walking. I have decreased > range of motion, whether due to pain or because it physically won't go I am > not sure as > it hurts too badly to force it. I recently went to my PCP about it because > it is takng away the little mobility I have left and preventing me from > increasing my indurance. She was concerned because I was on steriods and > said they can cause problems with your hips (I can't remember exactly what > she called it). She had me get X-rays taken of my hip but I do not have the > results yet. > Has anyone else had any problems like this? What was the reason? Was there > anything that made the pain better? I've tried heat and ice but neither seem > to help. I've also taken motrin and my stronger pain meds when the pain is > really bad which helps some but not with the intense pain when walking. The > only thing I've found that helps is staying off of it but that has its own > set of problems and causes pain in other places. I am getting very > frustrated as my physical therapist thought exercise would help it but so > far I have not noticed any difference and I am becoming more and more > limited in how much/how long I can do things. I was going to return to > college in February but as of right now am unable to largely due to the fact > that I can't walk enough because of the hip pain (even though I am getting a > Scooter). I am afraid I am going to be told that this pain is just from the > EDS or chiari and that there will be no treatment. I've thought about going > to the > rheumatologist I was seeing for a while but wasn't sure he'd be much help. > Any help/advice/stories would really help, even if it just makes me feel > like I'm not the only person out there dealing with this! Sorry for the long > post, I guess I got a bit carried away with my frustration. I hope you all > have a great long weekend and that it is as pain free as possible! > > Cristina > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 HI Cristina...Sorry to hear about your frustration and pain!! My 17 year old daughter gets significant hip pain (we assume related to her tethered cord). It is not as severe as what you describe but much to our surprise she finds significant relief via massage. Costly but worth it! Randee In a message dated 1/20/2008 12:48:29 A.M. Eastern Standard Time, sfyelm@... writes: Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/<WBR>failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/<WBR>failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/<WBR>stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my fr Cristina --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. [Non-text portions of this message have been removed] **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hi Cristina, I was curious - before I reply with a more in-depth answer. Where did you have your decompression surgeries done? - Why a shunt? (I know the " why " just wondering what happened that resulted in your need for one - did the surgery not go correctly? Was the shunt placed to help prevent a decompression?) Just quick - the hip pain you describe is one of the pain areas that started right after my first untethering (immediately upon waking) and never went away - I was told the pain was from my spinal cord - that there's nothing physically wrong with my hip. The spinal cord can send funky pain signals that can give you pain in many areas where structurally all is either fine, or not enough of a problem to cause the pain you experience. Kathy Hip Pain? Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since then I have been on steriods, first to reduce swelling and treat chemical meningitis and now for adrenal gland insufficency/low cortisol levels. I have always had a lot of joint pain, particulary in my knees and hips. I've been tested for arthritis and related disorders in the past but not for over a year. Some doctors have thought I might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly the joint pain has been put down to the chiari and other problems. Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my frustration. I hope you all have a great long weekend and that it is as pain free as possible! Cristina --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi Kathy, I was decompressed by Dr. Frim in Chicago in 2002. About 8 months later all my symptoms had returned and in Feb. 2003 I had a spinal tap that showed high intracranial pressure. I tried many meds but none helped. I live in Washington state and had started seeing a local neurosurgeon who diagnosed the tethered cord and detethered that in Sept. 2004 hoping to relieve the symptoms and prevent a shunt. That didn't work so my first shunt was placed in November 2004 and I've had many revisions since because of leaks and malfunctions. In May 2006 my chiari site was blocked w/scar tissue so Dr. Frim went in to decompress me again but stopped part way through as the scar tissue was stuck to my brain and it was too dangerous to continue. September 2007 Dr. Frim decided it was time to go back in and do the decompression anyway as I was having problems walking, swallowing and all my symptoms were progressing rapidly. Dr. Frim was not able to totally restore unrestricted flow as my vitals dropped significantly in the end because of the close proxmity to my brain stem. The surgery did cause a lot of issues with my legs (nerve pain, some numbness, lots of tingling) that has gotten somewhat better since then but recently gotten worse again. I do have a lot of lower back pain and I know my shunt tubing has hit nerves in the past but it never caused hip pain like this. It usually causes sciatic type pains down my legs and back pain. I did see the chiropractor and he said the pain was coming from a lower vertebrae than my shunt and didn't think it was nerve pain. He didn't know what was causing it exatly either though. Ok I think that was more information than you wanted but I hope it helps. :-) Thanks for your help too, I appreciate it! Cristina > > Hi Cristina, > > I was curious - before I reply with a more in-depth answer. Where did you have your decompression surgeries done? - Why a shunt? (I know the " why " just wondering what happened that resulted in your need for one - did the surgery not go correctly? Was the shunt placed to help prevent a decompression?) > > Just quick - the hip pain you describe is one of the pain areas that started right after my first untethering (immediately upon waking) and never went away - I was told the pain was from my spinal cord - that there's nothing physically wrong with my hip. The spinal cord can send funky pain signals that can give you pain in many areas where structurally all is either fine, or not enough of a problem to cause the pain you experience. > > Kathy > > > Hip Pain? > > > Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since then I have been on steriods, first to reduce swelling and treat chemical meningitis and now for adrenal gland insufficency/low cortisol levels. I have always had a lot of joint pain, particulary in my knees and hips. I've been tested for arthritis and related disorders in the past but not for over a year. Some doctors have thought I might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly the joint pain has been put down to the chiari and other problems. > Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as > it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. > Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the > rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my frustration. I hope you all have a great long weekend and that it is as pain free as possible! > > Cristina > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Hi Chistina You have a great deal to deal with already! It is hard enough to sort out what is caused by what, let alone keeping up with new changes or problems. Your description of the pain in your hip sounds like something I was " introduced " to about 4 years ago. Up until just after that time I had never heard of the disease that your PCA mentioned, which probably was Avascular Necrsosis. That was the first time I ever heard a Dr actually give it a name and description. I had been to my Dr several times and showed him the increasing distance from the bottom of my foor to the floor and complained about the " grinding noise I was having that even my daughter could hear when walking beside her. It all was exactly as you describe, right down to the physios attempts,.also unsuccessful. I have been told that about 10% of patients who receive steroids as part of their treatments for a number of problems, will develop Avascular Necrosis. The term means " death of bone " . The joint or joints develop severe and increasingly worse pain due to the pressure of all the cells in it swelling and dying inside the joint. It is severely painful until that is all finished. In my case ot was my right hip joint that had collapsed completely, I had no ball and socket left! Then came the adventure I had never had before and that was a total hip replacement. The surgery itself was not that terrible but I was. by that time, taking Oxycontin and therefore was not able to be helped by the " usual " OR pain meds and different tactics were required. I was in a " light " coma for 2 days so I could cope with the pain. After years of the same med I was resistant to the usual drugs. After the pain of the bone giving most patients are already starting to feel better. They are up and about and taking mild physio right away; joined them the next day. It was such a relief to have the previous pain gone and the " new joint " was such an improvement over what had been happening that we were a pretty " happy " group. I was already walking better! We went home in 3-4 days to finish healing then we went back for a 6 week pool physio program to work on do's and don'ts of a new hip. build back the mobility of the joint etc. After that, for 8 weeks or so, I walked better than I had in years and I was thrilled. After that I started to develop problems we hadn't expected with the new strong hip joint. My side to side curve was being pushed forward and rotating. In the years since, I have been on a constant state of change and trying to cope with radical postural changes. My bone mass had dropped to the basement and the first supplement I took for 2 years before we found that it was NOT doing a thing. Now my left hip is at risk because I spent 2 years losing more bone. There is a slim chance that if I work really hard with the new supplement I might be able to turn the tide. The issues after my surgery have been unique to me - so, those are not problems you need to worry about your having and depending on the degree of joint damage you have - if you have been early in finding the cause of your new pains. There are some alternatives to total joint replacement that your doctor might want to explore first which I am sure would be discussed with you. Steroids and what they can do are nasty things.... Luckily, most of the patients that have to take them have no problems, its hard to know who will and who won't so. probably they are best avoided if you can at all, Right down to steroid creams they can bad effects. Even a short course can set you off. I was diagnosed with MS in 97 standard protocol after a relapse was a 5 day course of IV steroids that's all it took for me....I have met many people on the web who had been treated with 1 to 5 days of treatment was all it took for AVN to start in your body. Fortunately the percentage is low but that doesn't help those who have problems....... When I asked my Dr how it got so advanced and so obvious in symptoms he answered that I had TCS and that he chalked everything up that or the MS. I was a complicated and hard to sort out ( Many of the symptoms of MS are the same as tethered cord etc.) That brings me to the very issues that I talked about in a previous post about us having to be advocates for ourselves and not falling into the trap of having problems with something and just calmly go about dealing with the very same ways we always have until we realize that what is happening is indeed, something new------and unexpected. It CAN'T be assumed that it is more of the same old things - everything that is showing up in our lives should be thoroughly investigated on let's own without any assumptions that it is part of other on going problems that you may have. A tough goal to accomplish, but if set you own goals and the drs dealing with us know that we intend to pursue new problems with research and knowledge gathering - it might help to prevent blanket statements Like " you are complicated " . et me know the xray results and feel free to ask any other questions you may have I really hope that you have caught this early and you have some options.. Here is a link to a very useful site http://osteonecrosisavnsupport.org/index.html Hip Pain? Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since then I have been on steriods, first to reduce swelling and treat chemical meningitis and now for adrenal gland insufficency/low cortisol levels. I have always had a lot of joint pain, particulary in my knees and hips. I've been tested for arthritis and related disorders in the past but not for over a year. Some doctors have thought I might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly the joint pain has been put down to the chiari and other problems. Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my frustration. I hope you all have a great long weekend and that it is as pain free as possible! Cristina --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 I'm not sure if my own information will help, but in case ... For me, before I had my initial untethering I had little to no pain. I did have some intermittent calf pain in my L leg, but that only started months before this untethering was very tolerable. I didn't know I had Lipomeningocele until about ten/eleven years ago - I was 35/36 when I was diagnosed. Anyway, when I woke from the first untethering, I was, as almost everyone is, in terrible pain. My back, hips, legs, everything. The pain was reduced once I healed from the surgery, but it also never left. The pain got worse within months and I also began experiencing spasticity. My nsg did absolutely nothing wrong (always feel as if I have to say that - sometimes there are complications from a nsg that didn't do a great job). I had/have pain in my hips (more-so in the left), horrible leg and back pain, shooting electrical/cramps down my left leg, etc, etc. Again for me, there is nothing wrong with these areas (except for my back of course), that would cause these pains. My spinal cord just sends pain signals to areas where nothing is wrong. I had a medtronic pain pump implanted in April of last year and it has Gabapentin (Neurontin) in it. The medicine delivered in this fashion took away 70-80% of my pain. As my activity increased so did my pain, but with each level of activity/pain increase, the clinic I go to turns up the Gabapentin and it helped the new pain. I could not wait to return to work though and I have no regrets (yet at least). The only residual pain I have is if I bend often (I teach K-5, sp. ed.) then my back will hurt and I get these God-awful electrical jolts in my L leg. The elec. jolt cycle is very difficult to break. At any rate, I had a total of five untetherings over an eight year period, plus an additional two lengthy surgeries to fix spinal fluid leaks (after my first untethering and I think the fourth surgery). I think we're programmed to want something that is wrong with us fixed. I'm not sure if enough people stop to think if their quality of life were made worse from a surgery, if they would feel the trade-off would be worth the " try " . I wish I had - but again, I really believe we're just programmed to want something wrong corrected. An untethering helps many, many people and they go back to their life without the problems they had before their surgery. However, it also can cause more damage than was present to begin with - and as far as I know, beyond taking into account if you had symptoms as a kid, and no intervention was done, there really isn't a litmus test to tell if you will be worse, better, or the same. If I had it to do over again, I would split a piece of paper into columns. I would list every issue that I find intrusive in my life that is caused by the tether. I would list on the next column what I hoped would be corrected/halted. I would rate how intrusive/how much pain each symptoms causes. I would then list how it would be changed if it were made worse/better from the surgery. List the life activities that we all want - to be able to be independent, to meet our own household needs - income, taking care of ourselves, our home, our children, all of those " musts " that we think we can't or don't want to live without being able to do. List next, those things that you aren't able to do - or might not be able to do if the surgery makes something's worse - going to the movies, shopping, going out with friends, etc. Again, list how much getting better/worse you would find these activities. Look at this list and whatever else you add to it, for a while. In your case, where you are having many problems now - I would also suggest keeping a daily diary if you aren't. When you find yourself frustrated or missing an activity that you were able to do or want to do - mark it. When you see your nsg, bring these with you and ask him/her what he/she thinks the chances are that you'll be able to do/not do after this surgery. This is about quality of life. Sorry for the length. Kathy Hip Pain? > > > Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal gland insufficency/failure and postural orthostatic hypotension. I have been decompressed (3 times) detethered and have had numerous shunt surgeries. My last surgery was in September '07 and since then I have been on steriods, first to reduce swelling and treat chemical meningitis and now for adrenal gland insufficency/low cortisol levels. I have always had a lot of joint pain, particulary in my knees and hips. I've been tested for arthritis and related disorders in the past but not for over a year. Some doctors have thought I might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly the joint pain has been put down to the chiari and other problems. > Lately (the last two months or so) my left hip has been causing many problems and is in a lot of pain. I first noticed it would pop out of place some when I was walking and that if I walked much (five minutes maybe, walking in a store is too much) it would be hurting very badly. It has gotten worse and worse and is now to the point that it hurts pretty much constantly at a dull ache and any time I walk it gets worse. About two weeks ago my Mom and I went to Joann Fabrics for less than an hour, twenty minutes of which I spent sitting in a chair at the front of the store. Afterwards my left hip was hurting so badly I was almost in tears. When we got home I could hardly put weight on my leg. This lasted for over a week and even when I was not walking the pain was worse. This is not the first time that I have had a hard time putting weight on my leg after walking. I have decreased range of motion, whether due to pain or because it physically won't go I am not sure as > it hurts too badly to force it. I recently went to my PCP about it because it is takng away the little mobility I have left and preventing me from increasing my indurance. She was concerned because I was on steriods and said they can cause problems with your hips (I can't remember exactly what she called it). She had me get X-rays taken of my hip but I do not have the results yet. > Has anyone else had any problems like this? What was the reason? Was there anything that made the pain better? I've tried heat and ice but neither seem to help. I've also taken motrin and my stronger pain meds when the pain is really bad which helps some but not with the intense pain when walking. The only thing I've found that helps is staying off of it but that has its own set of problems and causes pain in other places. I am getting very frustrated as my physical therapist thought exercise would help it but so far I have not noticed any difference and I am becoming more and more limited in how much/how long I can do things. I was going to return to college in February but as of right now am unable to largely due to the fact that I can't walk enough because of the hip pain (even though I am getting a Scooter). I am afraid I am going to be told that this pain is just from the EDS or chiari and that there will be no treatment. I've thought about going to the > rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any help/advice/stories would really help, even if it just makes me feel like I'm not the only person out there dealing with this! Sorry for the long post, I guess I got a bit carried away with my frustration. I hope you all have a great long weekend and that it is as pain free as possible! > > Cristina > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Cristina, My daughter is also a patient of Dr.Frim. She also has intracranial hypotension. Just thought I would say hello.... Tommi www.caringbridge.org/visit/amandapeters --- CristinaKathy wrote: > Hi Kathy, > I was decompressed by Dr. Frim in Chicago in > 2002. About 8 > months later all my symptoms had returned and in > Feb. 2003 I had a > spinal tap that showed high intracranial pressure. > I tried many meds > but none helped. I live in Washington state and had > started seeing a > local neurosurgeon who diagnosed the tethered cord > and detethered > that in Sept. 2004 hoping to relieve the symptoms > and prevent a > shunt. That didn't work so my first shunt was > placed in November > 2004 and I've had many revisions since because of > leaks and > malfunctions. In May 2006 my chiari site was > blocked w/scar tissue > so Dr. Frim went in to decompress me again but > stopped part way > through as the scar tissue was stuck to my brain and > it was too > dangerous to continue. September 2007 Dr. Frim > decided it was time > to go back in and do the decompression anyway as I > was having > problems walking, swallowing and all my symptoms > were progressing > rapidly. Dr. Frim was not able to totally restore > unrestricted flow > as my vitals dropped significantly in the end > because of the close > proxmity to my brain stem. The surgery did cause a > lot of issues > with my legs (nerve pain, some numbness, lots of > tingling) that has > gotten somewhat better since then but recently > gotten worse again. > > I do have a lot of lower back pain and I know my > shunt tubing has hit > nerves in the past but it never caused hip pain like > this. It > usually causes sciatic type pains down my legs and > back pain. I did > see the chiropractor and he said the pain was coming > from a lower > vertebrae than my shunt and didn't think it was > nerve pain. He > didn't know what was causing it exatly either > though. > > Ok I think that was more information than you wanted > but I hope it > helps. :-) Thanks for your help too, I appreciate > it! > > Cristina > > > > > > > Hi Cristina, > > > > I was curious - before I reply with a more > in-depth answer. Where > did you have your decompression surgeries done? - > Why a shunt? (I > know the " why " just wondering what happened that > resulted in your > need for one - did the surgery not go correctly? > Was the shunt > placed to help prevent a decompression?) > > > > Just quick - the hip pain you describe is one of > the pain areas > that started right after my first untethering > (immediately upon > waking) and never went away - I was told the pain > was from my spinal > cord - that there's nothing physically wrong with my > hip. The spinal > cord can send funky pain signals that can give you > pain in many areas > where structurally all is either fine, or not enough > of a problem to > cause the pain you experience. > > > > Kathy > > > > > > Hip Pain? > > > > > > Hello! My name is Cristina and I'm 19 years old. > I've been > diagnosed with ACM 1, TCS, EDS, PTC, arachnoiditis, > degenerative disk > disease, osteopenia, adrenal gland > insufficency/failure and postural > orthostatic hypotension. I have been decompressed (3 > times) > detethered and have had numerous shunt surgeries. My > last surgery was > in September '07 and since then I have been on > steriods, first to > reduce swelling and treat chemical meningitis and > now for adrenal > gland insufficency/low cortisol levels. I have > always had a lot of > joint pain, particulary in my knees and hips. I've > been tested for > arthritis and related disorders in the past but not > for over a year. > Some doctors have thought I might have fibromyalgia > but I don't quite > fit the symptoms correctly. Mostly the joint pain > has been put down > to the chiari and other problems. > > Lately (the last two months or so) my left hip > has been causing > many problems and is in a lot of pain. I first > noticed it would pop > out of place some when I was walking and that if I > walked much (five > minutes maybe, walking in a store is too much) it > would be hurting > very badly. It has gotten worse and worse and is now > to the point > that it hurts pretty much constantly at a dull ache > and any time I > walk it gets worse. About two weeks ago my Mom and I > went to Joann > Fabrics for less than an hour, twenty minutes of > which I spent > sitting in a chair at the front of the store. > Afterwards my left hip > was hurting so badly I was almost in tears. When we > got home I could > hardly put weight on my leg. This lasted for over a > week and even > when I was not walking the pain was worse. This is > not the first time > that I have had a hard time putting weight on my leg > after walking. I > have decreased range of motion, whether due to pain > or because it > physically won't go I am not sure as > > it hurts too badly to force it. I recently went > to my PCP about > it because it is takng away the little mobility I > have left and > preventing me from increasing my indurance. She was > concerned because > I was on steriods and said they can cause problems > with your hips (I > can't remember exactly what she called it). She had > me get X-rays > taken of my hip but I do not have the results yet. > > Has anyone else had any problems like this? What > was the reason? > Was there anything that made the pain better? I've > tried heat and ice > but neither seem to help. I've also taken motrin and > my stronger pain > meds when the pain is really bad which helps some > but not with the > intense pain when walking. The only thing I've found > that helps is > staying off of it but that has its own set of > problems and causes > pain in other places. I am getting very frustrated > as my physical > therapist thought exercise would help it but so far > I have not > noticed any difference and I am becoming more and > more limited in how > much/how long I can do things. I was going to return > to college in > February but as of right now am unable to largely > due to the fact > that I can't walk enough because of the hip pain > (even though I am > getting a Scooter). I am afraid I am going to be > told that this pain > is just from the EDS or chiari and that there will > be no treatment. > I've thought about going to the > > rheumatologist I was seeing for a while but > wasn't sure he'd be > much help. Any help/advice/stories would really > help, even if it just > makes me feel like I'm not the only person out there > dealing with > === message truncated === www.caringbridge.org/visit/amandapeters ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
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