Page 1 of 2 12 LastLast
Results 1 to 10 of 33

Thread: OK Is there anyone that could advise me on AFO information, if you can and would...

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Location
    Long Island, NY
    Posts
    2,298

    OK Is there anyone that could advise me on AFO information, if you can and would...

    hi,

    I was wondering if Dr. Young and/or medical personal could answer my question and any other comments if any would be appreciated.

    I am 48 yr. old female with Cervical Spondylotic Myelopathy. I had fusion surgery 12/09 C5/6 7/8, Osteopytes compressing spinal cord removed at C3/4. My gait has been altered since 12/08 about 6 months after the pain down my neck, shoulders into hands began. I began to have very heavy legs, wide based stiff gait at times barely able to walk at all. Although my gait was never normal again it waxed and waned thoughout the time it started up until my surgery and still continue to have difficulty walking.

    I had a MVA when i was 20 and had head trauma and my neck cracked the steering wheel from direct trauma. i had no idea about disc problems or ddd back then. I was hosptilized for 4 days concussion etc. but all these years later I had this rapidly progressing myelopathy.

    I still walk with wide based gait, my legs are still stiff, although better I still cannot walk long distances (use a cane for this) or walk up stairs without a struggle, run participate in sports etc. As i say although my gait is better I am 8 months post op and it just doesnt feel as though I am going to regain all the function in my legs. Most important I cant produce any "power" if i force myself to try and run etc. my legs are like rubber. I have been told by my neurosurgeon, physiatrist, pain management and PT that It may never return and of course no one can give me any other answer. I was told by my surgeon and physiatrist that people with Myelopathy are usually always left with permanent deficits. I am still in PT 8 months post op and PT many months before surgery. I am not even discussing the pain i still have down my are and hand and numbess intermittently. Although better I have accepted I will always have some pain I guess.

    So my question is: Is there anything that can be done for a person like me who had injury to their spinal cord but is not paralyzed? I am grateful I can walk but my life is a shadow of what is was. I dont work, am on disability and workers compensation. I was always physically active and in good shape, and I just feel like im being told that basically my gait has a crap shoots chance of returning to normal function. I would like to think that this is not all there is for me. Is there anything else that can be done for me? Any help for my spinal cord?

    thankyou for your help.

    sincerely,
    m.

  2. #2
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Location
    Long Island, NY
    Posts
    2,298

    what to do to get an answer or feedback to a question???

    hi,
    i posted a question some weeks ago titled CSM at 48 permanent cord damage? Ive tried to get an answer, wrote to the md on the site, but still no input or answer. Is there no place for people with myelopathy here, i dont know.

  3. #3
    I will ask Dr. Young to respond, but if your cord has been decompressed sufficiently, and you are not getting more return, it may be that the disability you have now is what you will have.

    Have you had any return since your surgery or have your deficits remained stable? I am sure you know that stenosis decompression surgery may not always help any existing myelopathy, and often makes it worse. I have a number of clients who are completely paralyzed following this surgery.

    (KLD)

  4. #4
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Location
    Long Island, NY
    Posts
    2,298
    thanks for replying. Oh my thats terrible that your patients became paralyzed after the surgery, very disturbing. Immediately after my surgery for several days I had no problems with my gait it was as though nothing ever happened, I thought I was "cured". But on about the 9th day the heaviness and jerky non fluid gait came back and hasnt left since.


    I have had function return since the surgery, I now walk upright thanks to PT and them teaching me again the correct mechanics to walking which has helped my posture and gotten me upright again. The function in my legs waxed and waned before the surgery between barely being able to hold myself up and walking "ok" short distances, never normal though. After the flex/extend MRI it was clear there was severe stenosis compressing cord on extension and progressingn neurological deficits and I needed surgery After the surgery now 8 1/2 months post op i can get around ok in my house, still problems with stairs even the 4 in my house but better. Stair cases I need to pull myself up with railing and sometimes cane, also going down stairs is tricky have to look at my feet, feel off balance. But it seems ive hit a plateau.

    I have been trying to lift 10 lbs on the cybex machine with my quadriceps for months now and it may as well be 100 lbs. My legs are wobbly and weak and sort of crumble when i get off and need to recover a few minutes. 20 lbs on add and abduction, 15 pounds hamstrings. When I walk around my neighborhood about 5 blocks I am limping and fall to my right and tired, my gait is jerky and non fluid and I stomp kind of. I am now doing exercises at PT to strengthen I dont know what muscle but to keep my feet from slapping on the ground. Sometimes my left legs swings around as I walk, its a drag.

    But i just cant run not on treadmill or street, there is no power. like an appliance where the plug has been pulled. A few steps and thats it. So that impairs the stair cliimbing and anything else I want to do. I am grateful to walk but walking with an abnormal gait has its own set of problems. I have always been active and it is very frustrating.

    My arms predom. the left still hurt, paresthesias etc. some days ok somedays terrible. I live on Long island and the rain the last few days made the pain etc. excrutiating even on meds. I have also had a problem with my calves since my gait went in 12/08 with spasm or cramps whatever they are, PT contantly stretches them and so do I and use stim and heat they have improved but need constant stretching and when they hurt it is extremely painful.

    I recently had another set of trigger points for myofascial pain in traps and scapula area and I know it is only a small amount of steroids but obviously there is some systemic effect as there is uterine bleeding everytime I have gotten epidurals etc, and this time about 3 days after the trigger point injections sometime happened at my house and I went to run to do something outside and was able to run more than 3 steps without crumbling. So I slammed the door and ran all the way around the block it felt as though nothing was ever wrong with my legs, but it only lasted about 20 minutes. So Im wondering if there is some cord swelling and even a tiny bit of steroids could help. It hasnt happend since. that was 5 weeks ago.

    I wish i had people with this condition to talk to I have searched and searched but from what I understand it is mostly older people spondylotic myelopathy although I suppose myelopathy is myelopathy whatever the cause just cant find a support group or such.

    I think my surgeon thinks I should have snapped back like a rubber band but in my heart I believe that the MVA when i was younger was th start of it and I guess it takes years to grow osteophytes and maybe compression has been going on for a very long time until it became obvious, perhaps too long.

    Just wondering if there is anything else I can do, after 8 1/2 months post op will i still recover function in my legs (my gait was abnormal for a year before the surgery), feels like ive hit a plateau and I try to be positive but i want to do so much and i cant. I sometimes feel in my heart this is as good as it will get, i am sure there will be some deficits without a doubt.

    Lastly what do you think about the steroid injections and what I described happened to my legs albeit for a very short time following them. I know it sounds improbable but it happened.

    sorry i wont write any posts this long if i post in the future. thanks for your time and response.

    sincerely,
    m.

  5. #5
    Junior Member VavaBoomer's Avatar
    Join Date
    Feb 2009
    Location
    near St Louis MO
    Posts
    20
    I have CSM, along with my other spinal cord problem. I would love to have someone to share with too. Everything you talked about hit home with me. I sent you a private e-mail, so it may go to this account or your own personal account.

  6. #6
    Mary,


    I also have CSM plus other spinal issues and am 49 yrs old. Your post also hit home with me including the MVA and head smacking the steering wheel (rear ended at 35 mph at a red light) back in 1998. Sorry you are here but would be glad to talk with you ~ totally understand not having someone to tak to who understands what your feeling.

    Liz
    PrpleHarly08

    Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

  7. #7
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Location
    Long Island, NY
    Posts
    2,298

    CSM at 48 again question to Dr. Wise or Nurse about AFO please

    Hi,

    I posted my whole story under CSM at 48. I have cervical spondylotic myelopathy for which i had fusion surgery 8 1/2 months ago at 2 levels. My gait started to get bad in 12/08. My question is although my walking is better besides limping, no power etc. I cannot pick up the ball of my right foot. Sometimes it is better than other times, sometimes i can pick up toes, sometimes more, sometimes barely the toes.

    In any event as a result of this and whatever neurological damage i have that prevents normal walking I dont always clear the pavement, when I am at PT on the treadmill my feet slap down so i am obviously not flexing or extending my ankle properly. They are working (finally) on that problem in PT with exercise but I was wondering if an AFO would benefit me in the mean time and in case it never goes away. As i say i dont have full blown foot drop but i do have a problem. I dont want to stop working on it, but I thought it might help me not to limp and slap my feet when I walk. I asked my physiatrist and he said "well if you keep on tripping maybe", i do trip but only occasionally. I just thought it might help me walk better.

    By the way as a note I have been walking like this for going on 2 years now, although as I say have regained function but still missing alot. (power mostly).

    Could you weigh in on this Dr. Wise or SCI nurse please?

    Sincerely,
    m.

  8. #8
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Location
    Long Island, NY
    Posts
    2,298
    hey guys thanks for the responses. Nice talking to you "Vava", talk to you soon. Liz thanks for responding, I would like to email and chat, I am having problems with my hand and finally going to OT eval. Think I have a myelopathic hand. Anyway, i will email you soon if thats ok, maybe you can tell me your story

    m.

  9. #9
    Sorry I haven't replied sooner - went to stay with my daughter for a couple of days. You can email whenever u would like
    PrpleHarly08

    Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

  10. #10
    Mary, I did a complete search of carecure and was unable to find a thread entitled "CSM at 48" and assume that you are referring to this post. If you refer to a post, please include the URL address of the post. The URL is the address on the top of the browser and if you post it, it will appear as a link so that it saves people from having to search for your posts amongst over a million posts that are present on this site. I am sorry that I did not answer your post here because a number of others had responded thoughtfully and there was not much that I could add that would have been useful.

    About 25% of people who had cervical spine injury had traumatic brain injury as well. The combination of brain and spinal cord injury often results in very complicated recovery patterns that are difficult to predict. As you know, there is currently no effective therapy for chronic traumatic brain injury or spinal cord injury. On the other hand, there is evidence from animal studies that several therapies may be useful for regenerating the spinal cord of animals. Regenerative therapies fall into four categories:
    • Growth factors
    • Cell transplants
    • Growth inhibitor blockers
    • Cell adhesion molecules

    Cell transplants and particularly stem cells transplants have attracted much attention but most of it is hype, in my opinion. Your brain and spinal cord already has stem cells. While those stem cells participated in the repair of your brain and spinal cord after injury and you have recovered substantially from your injury, there is no reason to expect that other stem cells will know what to do or be able to do it better than the stem cells that already are present in your spinal cord.

    Nevertheless, several cell types are popularly transplanted in various places around the world. Probably the most transplanted cell is olfactory ensheathing glia (OEG). These cells originate in the nose and are believed to be responsible for the ability of the olfactory nerve to regenerate repeatedly throughout adult life. In China, over a thousand people have received such transplants but the results have been limited and mixed. One reason for limited and mixed results is because they have been harvesting the cells from olfactory bulbs of aborted fetuses and, because these cells are not immune-matched (HLA-matched) to the recipients, they are likely to be rejected within a few weeks or months after transplantation. While many patients seem to recover some sensation after transplantation, motor recovery has been limited. There has been some effort to obtain OEG cells from the person's own olfactory mucosa in Australia, Portugal, and England but none of these have been convincingly effective.

    Another cell type that has attracted a great deal of attention and has been used by many people are bone marrow cells. Because the bone marrow is obtained from the same person, it is immune-compatible. While there is some data suggesting that bone marrow cells may be beneficial when transplanted shortly after injury, there is little reason to expect why transplantation of bone marrow cells into a chronically injured spinal cord would be helpful. Bone marrow cells contain stem cells that produce blood cells. They have some multipotent stem cells called mesenchymal stem cells but it is not clear that mesenchymal stem cells would necessarily be helpful as well. In any case, most of the clinics have been transplanting the cells by injecting them intrathecally (into the cerebrospinal fluid surrounding the cord). In my opinion, this is not a good way to inject the cells and I am skeptical that the treatment would do anything. I have known some people who have received such therapies and I am not aware of anybody who has regained motor function as a result of the treatment.

    Umbilical cord blood (UCB) cells are a third type of cells that has received much interest and attention lately. UCB cells contain more stem cells than bone marrow and over a dozen laboratories have reported that these cells restore function when transplanted shortly and as late as a week or more after spinal cord injury in animals. When transplanted into the spinal cord UCB mononuclear cells (these are the cells that include stem cells but excludes red blood cells and platelets) will survive 2-3 weeks. If they are HLA-matched to the recipient, they should last even longer. UCB mononuclear cells are known to secrete growth factors that stimulate regeneration. We recently discovered that lithium strongly stimulate UCB cells to produce more neurotrophins that encourage regeneration. Based on that, we have proposed a clinical trial that will transplant the cells into the spinal cord and then treat patients with lithium. However, beware of clinics that are trying to tell you that umbilical cord blood transfusions into the blood or intrathecally will restore function. While some early studies suggest that umbilical cord blood cells may "home" to the injury site, subsequent work was not able to confirm that intravenously administered cells get into the spinal cord. Non HLA-matched cells given intravenously would be rapidly rejected.

    One place in India claim to be injected embryonic stem cells. This is the clinic of Geeta Shroff. I have not seen any evidence that suggests that these cells are embryonic stem cells. If they are embryonic stem cells, I would be very careful about injecting them in the body, because they can cause teratomas (embryonic stem cell tumors). One company in the United States has received approval from the FDA to transplant embryonic stem cells into the spinal cord. The company Geron has spent many years collecting the data to develop a cell line that is derived from embryonic stem cells and does not produce tumors in animals. It will be interesting to see what this clinical trial shows.

    Many other therapies have been reported to regenerate the spinal cord. For example, there is a clinical trial testing nogo antibodies. Nogo is a myelin-based molecule that has been shown to stop regenerating axons. Nogo antibodies block Nogo and have been found to regenerate the spinal cord of animals. That is now in phase 2 clinical trials in Europe and soon in the United States. Another promising drug is Cethrin. This is a drug that blocks an intracellular messenger called Rho, which is responsible for implementing the axonal growth inhibitor effects of Nogo. It too has gone through phase 2 trials, was licensed by a company called Alseres, which is trying to raise the funds to take it further into clinical trials. There is substantial interest in a enzyme called chondroitinase, which breaks down an extracellular matrix material called chondroitin-6-sulfate proteoglycan (CSPG). While many animal studies have suggested that chondroitinase wiil stimulate regeneration in the spinal cord, it has not yet been taken into clinical trial yet.

    There are many other therapies that have been reported to regenerate the spinal cord. There is no dearth of therapies that needs to be tested. Politics, the recession, and cutbacks of NIH funding have held back progress but I think that we are beginning to see spinal cord injury trials starting both in the United States and overseas. I hope that these trials will start testing therapies. Even if they show that a therapy does not work, it would be very helpful to turn our resources to the remaining ones that work. Our current situation is not good. People are rushing to overseas clinics and trying out therapies with little or no data to show that the therapies work. Thousands of people are spending a great deal of money on therapies that are not being applied correctly and we cannot trust the data that are coming from clinics that are trying to make money from unproven therapies.

    I don't know whether any of these therapies will help restore function. On the other hand, I do believe that there will be therapies that will restore function to people with chronic brain and spinal cord injury. We need to do good clinical trials to assess the safety and efficacy, publish the results so that we can move forward and focus our resources on what works.

    Wise.



    [QUOTE =marycsm77;1245412]hi,

    I was wondering if Dr. Young and/or medical personal could answer my question and any other comments if any would be appreciated.

    I am 48 yr. old female with Cervical Spondylotic Myelopathy. I had fusion surgery 12/09 C5/6 7/8, Osteopytes compressing spinal cord removed at C3/4. My gait has been altered since 12/08 about 6 months after the pain down my neck, shoulders into hands began. I began to have very heavy legs, wide based stiff gait at times barely able to walk at all. Although my gait was never normal again it waxed and waned thoughout the time it started up until my surgery and still continue to have difficulty walking.

    I had a MVA when i was 20 and had head trauma and my neck cracked the steering wheel from direct trauma. i had no idea about disc problems or ddd back then. I was hosptilized for 4 days concussion etc. but all these years later I had this rapidly progressing myelopathy.

    I still walk with wide based gait, my legs are still stiff, although better I still cannot walk long distances (use a cane for this) or walk up stairs without a struggle, run participate in sports etc. As i say although my gait is better I am 8 months post op and it just doesnt feel as though I am going to regain all the function in my legs. Most important I cant produce any "power" if i force myself to try and run etc. my legs are like rubber. I have been told by my neurosurgeon, physiatrist, pain management and PT that It may never return and of course no one can give me any other answer. I was told by my surgeon and physiatrist that people with Myelopathy are usually always left with permanent deficits. I am still in PT 8 months post op and PT many months before surgery. I am not even discussing the pain i still have down my are and hand and numbess intermittently. Although better I have accepted I will always have some pain I guess.

    So my question is: Is there anything that can be done for a person like me who had injury to their spinal cord but is not paralyzed? I am grateful I can walk but my life is a shadow of what is was. I dont work, am on disability and workers compensation. I was always physically active and in good shape, and I just feel like im being told that basically my gait has a crap shoots chance of returning to normal function. I would like to think that this is not all there is for me. Is there anything else that can be done for me? Any help for my spinal cord?

    thankyou for your help.

    sincerely,
    m.[/QUOTE]

Similar Threads

  1. Need some advise please
    By Riaan in forum Care
    Replies: 0
    Last Post: 02-10-2010, 08:11 AM
  2. Please advise
    By Godbless in forum Cure
    Replies: 1
    Last Post: 09-22-2009, 02:02 PM
  3. Need advise
    By crppled007 in forum Family
    Replies: 6
    Last Post: 03-31-2008, 09:09 AM
  4. Advise need
    By TAB in forum Caregiving
    Replies: 5
    Last Post: 02-19-2008, 10:52 AM
  5. Advise Please!!
    By Cookie in forum Life
    Replies: 3
    Last Post: 06-03-2002, 04:14 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •