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

  1. #21
    Moderator jody's Avatar
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    well maybe not. the lady in the video seems to have good balance. I use canes or trecking pole to keep me going strait as well as leaning weight on them to heft the weak side. in a swinging recipricating kind of gait. imagine putting a strap just under your knee's and just walking off. I am wondering if they would work well for triking too?

  2. #22
    The WalkAide helps a lot of people, but there are some who can't use it. I was evaluated for both the Walk-Aide and the Bioness (sp?) and was among the small population of people who feel intense stinging pain from the electrode. Generally speaking, the less disability you have, the more these devices will help - evaluation by a PT trained by the company does not usually cost anything, so it certainly wouldn't hurt to see if the demo model works for you. Be warned, most insurance companies will not pay for these devices and they cost between $5000-$6000.

  3. #23
    Senior Member marycsm77's Avatar
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    thanks bonnette and Jody for all the useful information and your time, i appreciate it.

    I just want to say again I DO HAVE a physiatrist. My stomping may not be all do to the one foot, it is part of a gait pattern of cervical myelopathy wide based, non-fluid etc. although it is better than 2 years ago.

    They are well aware of my neurological problems as my neurosurgeon sent me post op to the physiatrist who sent me to the PT team in the same place, that works with people with spinal cord injuries, MS etc. My neurosurgeon has from the beginning sent me to different periphery md's pain man., physiatrist, pt, neurologist throughout the whole ordeal, although I dont go to the neurologist anymore as I think after differentials were done and a dx made of cervical spondylotic myelopathy and i had surgery, there is not much he can do for me. As i said he was good with differentials, testing etc.

    i BELIEVE THAT MY NEUROSURGEON THOUGHT I WOULD BOUNCE BACK LIKE A RUBBER BAND AFTER DECOMPRESSING MINE SPINAL CORD BECAUSE IM "young" AS HE SAID, BUT MY CORD WAS COMPRESSED FOR A YEAR BEFORE THE SURGERY AND THAT IS ONLY WHEN THE SYMPTOMS MANIFESTED. I HAD AN MVA WHEN I WAS 20 AND (no airbags etc back then) AND CRUSHED MY NECK INTO THE STEERING WHEEL AND HEAD INTO WINSHIELD SO I BELIEVE THAT WAS THE START OF IT AND THEN THE OSTEOPHYTES GREW AND ALL SORTS OF ARTHRITIC CHANGES UNTIL I COULD JUST BARELY WALK.

    Perhaps the physiatrist doesnt want me to start with a brace yet as I told you he said "well if you keep tripping" I dont trip that often, and thinks my limp is probably neurological, and of course my lack of power (ie cant run, stairs, proprioception etc) like my legs are rubber, been like this for 2 years. What is better as I said is my posture, i used to be way hunched over walking like a robot and they got me on parallel bars and re-taught me so to speak the mechanics of walking, which i quickly picked up again with practice. I get around quite well for short distance and around the house, but put me outside and any distance and my legs just get heavy, stiff (not as bad) and limp. The limp only started about 6 months though, although I said my gait was disturbed and I mean extremely since 12/08, why i had the surgery.

    I know I will never return to normal, i didnt realize how many little intricacies are involved in ambulating etc. Not to mention my arm pain and parasthesias and hand problem for which i am seeing OT.

    oh well sorry to digress, I will speak with physiatrist again perhaps even before I see him again in 6 weeks and speak to my Physical Therapist about it next week. Maybe they are not being as astute as they could be.

    I live on LI about 25 miles from Manhattan. I would have gone to manhattan for my care and surgery (which is where I worked) but I could never have commuted with my injury all the times I have been the the md's pre-op and post-op. i have been happy with my surgeon overall.

    CAN I JUST ASK YOU DO YOU HAVE TO HAVE COMPLETE FOOT DROP TO BENEFIT LIKE AS YOU SAY FOR SOME SORT OF DEVICE TO WEAR PART OF THE DAY FOR WALK ETC.? ALSO I DEAL WITH WORKERS COMP, I GET SSD NOW, BUT WC PAYS FOR ALL R/T INJURY AND THEY ARE CHEAP, SO THAT DEVICE THAT IS BETWEEN 5-6 GRAND, THEY WOULD FIGHT TOOTH AND NAIL.

    thanks again.
    sincerely,
    m.
    tHANK YOU BOTH FOR TALKING TO ME

  4. #24
    Senior Member marycsm77's Avatar
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    Well I digressed so much I forgot to re-iterate that I do not have full foot drop but have difficulty picking up the ball and toes of my right foot. Some days worse than others, so i DO COMPENSATE BY lifting my knees etc. Probably this is all i needed to say instead of all that info thats why I asked if only people with "full blown foot drop" used devices.

  5. #25
    Mary, I think I hear panic and fear in your posts, and if I'm wrong please forgive me. It's just that I can relate to where I think you are now. My experience and thought processes have been conditioned by very poor medical care, so do consider that whatever I say to you runs through that filter.

    In spite of the fact that your surgeon seemed to have expected you to have more or less full CNS recovery postop, the deficits you are left with are - alas - pretty typical for the type and location of your presenting symptoms and subsequent surgery. Relieving nerve compression is the intention of the type of surgery you had, but in order to do that the nerves have to be stretched and retracted - so solving one problem leads easily to another. The fact that you have multiple postop neurological issues involving arms, hands and legs is not unusual, unnerving (!) as that is - I have been told by more than one medical professional that this is more the rule, than the exception. And it can make one feel very alone, sad and scared when months drag into years without much improvement.

    Since your neurosurgeon has gathered a postop team who seem to have a lot of combined neurological experience, then press them for answers. Only well trained and experienced professionals can answer your questions about complete v. incomplete footdrop in your particular case, based on clinical examination in addition to imaging studies. Also, there are many, many kinds of AFOs, from minimal strapping devices to customized braces - what helps one person, might not help you.

    Sad to say, many times surgeons do not have an easy time coping with less than stellar outcomes; in such a situation, the patient does not feel seen and heard. I don't know if that's what you are experiencing, but it wouldn't be surprising if you were. Since you are under the regular care of a medical team, my suggestion would be that you ask questions of them until you feel satisfied that your needs have been genuinely understood and addressed. In the past, I made the mistake of accepting what I'd been told, even when a little inner voice told me to keep pushing the issue...a word to the wise! And best wishes.

  6. #26
    Senior Member marycsm77's Avatar
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    bonnette,
    thanks for putting things so well. I believe the statement about the surgeons is true, about not accepting anything less than stellar results. However that being said, there was never a promise of complete recovery in anyway, nor is there a denial by him that I could have (i definitely believe) have permanent neurological damage. Actually my surgeon is the 3rd one who I went to was misdiagnosed by a nut (ie cutter) before with cauda equina, which I dont have. Anyway he always listens, giving suggestions of what to do and actually is quite humble for a neurosurgeon. That being said, I am fusing and Im sure as far as he is concerned that is success. There were success with the surgery, ie migraines gone, feeling of being hit with a bat in the back of the neck every waking day gone.

    But I hear you about pushing forward until you get all the answers that is the only way I have gotten thru this nightmare (workers comp) making it terrrible.

    Last thing I will say is you know what bothers me most is the "lack of power" in my quads. I have been at 10lbs on the cybex seated leg extension for about 7 months, it is infuriating. There is a tremendous disconnect between my brain and quads. That is why there is no power, cant manage comfortably upstairs, walk any significant distance with any normallcy(sic) run anything requiring "power" . It is like the plug is pulled or the switch flipped to off, when power is needed.

    I guess i ramble a bit, because I dont know personally anyone with CSM, I know that it is normally seen in the elderly. I have always been active and fit and it is frustrating.

    As I say, i am grateful to walk. I am also a nurse (psyche) so I dont get intimidated by the md's etc. and do alot of research.

    Thanks for all your insite and speaking with me, Im getting past the anger (I think) and will push on. Take care of yourself

  7. #27
    Senior Member marycsm77's Avatar
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    No wonder you write so well and thoughtful bonnette, i just looked at your profile and you are a writer, not a surpise now I am or was a visual artist of sorts (besides being a nurse) well we see if something can be done with my hand as well. never realized how important my spinal cord was till it was injured take care.

  8. #28
    The labels are useful, but they can also be obstacles, eh? CSM, MS, CES, MD...they all pretty much end up in the same place: neuropathy and loss of function. That's the bit we deal with daily, and sometimes arriving at a plateau represents significant improvement (quite the opposite of the mainstream idea of rehabilitation).

    It's great that you're a nurse and visual artist, as you are not intimidated by the medical profession and you have a way to express your feelings graphically (hand issues allowing).

    I so know what you mean about not having appreciated the spinal cord before! Most of the time, it works so well that we seldom give it a thought...until it doesn't.

  9. #29
    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. #30
    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]

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