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  • Nerve damage?

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    Old 05-04-2004, 05:12 PM   #1
    Kiwi_Girl's Avatar
    Join Date: May 2004
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    Kiwi_Girl HB User
    Cool Nerve damage?

    I had a bad fall in 2001 and began experiencing low back pain days later. The low back pain slowly increased to include sciatica (in both rumps and in the hamstring muscle area of both legs). I had never heard of herniated discs and stupidly believed that any injury to your spine resulted in paralysis. Therefore, because I wasn't paralysed, I didn't think - for a moment - that my spine had been injured with the fall. My g.p. (at the time) did not explain spine injuries to me, never even mentioned the possibility that I may have injured my spine, and so each time I went to him I just accepted his diagnosis of rheumatism/arthritus/gout and took the medicines he prescribed (Voltaren, Celebrex, Vioxx). As time wore on, the (what I began to refer to as) "flare ups" of pain increased and the periods when I was partly pain free began to diminish. By the time the penny dropped I had swelling/enlargement of my right hamstring muscle and because this was pulling up tightly I was finding it difficult to walk without pain. A resultant MRI showed that I had a large herniation (S1/L5) and I had a laminectomy done in August last year. By that stage my right calf muscle was also playing up (it felt very enlarged, tight and sore - especially in the mornings). My orthopaedic surgeon put both my harmstring and calf muscle problems down to my back injury.

    The surgery was successful but when I tried to walk I found that my right leg felt strange (loss of sensation under my right foot and my right foot also seemed to be heavy/difficult to pick up when I wanted to walk around). The physiotherapist who visited me in hospital after the surgery asked me to flex my right ankle the day after the surgery. I was horrified to find that I could not get it to bend like the left ankle but he said that this should improve with time and exercise.

    When I had the six week check-up with my orthopaedic surgeon after the surgery, I showed him how I could no longer flex (bend) my ankle and he also said that this problem should improve with time. I told him too about the loss of sensation under my right foot (especially the area running along and underneath the right side of my foot and the area running along the front of my toes from right to left) and he again said that this should improve with time.

    It is now 9 months since I had my laminectomy and I have the following problems:

    1) Despite serial castings to my right ankle and leg (x 4) I still cannot bend/flex my right ankle like I can my left ankle. I can bend it downwards and slightly upwards, but it cannot bend all the way upwards like my left ankle. If I use all my strength to try and bend my right ankle upwards forcefully, my toes start to curl upwards, causing the skin covering the area in front of toes to roll/dimple. My orthopaedic surgeon has termed this a "fixed flexion ankle deformity" but he has given me no explanation for this condition, how long I will have to live with it, whether I am facing living with this permanently (as a disability) etc.
    2) My right leg calf muscle is much larger than my left leg calf muscle and the right leg calf muscle remains tight/contracted even when I am in a sitting/resting (lying down) position. This appears to worsen overnight and every morning when I awake I can only walk on my tie-toes (right foot). Slowly, as the calf muscle appears to warm up (with exercise), this improves each day until the night draws in again and the muscle start to contract again. As above, my orthopaedic surgeon has never discussed this with me, given me an explanation, etc. etc.
    3) My right hamstring muscle is enlarged. As above, this appears to worsen overnight, etc. and as above, my orthopaedic surgeon has never discussed this with me, given me an explanation, etc. etc.

    Despite experiencing no pain in my lower back after the laminectomy, I started to feel the earlier back pain returning about three/four months after the surgery. I visited my orthpaedic surgeon on four occasions post surgery and on three of these occasions I told him that I believed I had re-herniated my disc ... but I was ignored.

    Before the surgery I had also complained about a tingling/pins and needles type sensation in my vagina, and that I was having difficulty with urinating (could not seem to properly feel when I had a full bladder and had problems holding back when my bladder was full). Although he mentioned cauda equina syndrome to me, again no explanation was given about this condition.

    By early April I was again having the cauda equina symptoms and the low back pain had returned with a vengeance. I was sent to our local hospital emergency dept. by my g.p. where they did a contrast MRI. This showed no scar tissue but an "extrusion" at L5/S1. The hospital doctors wanted me to have an epidural injection but no-one was prepared to discuss the benefits/risks of such treatment with me, so I decided to go home and do my own research. I have decided against the epidural injection because of the bad reports by those who have had this treatment. I am due to see our country's "top" orthopaedic surgeon (for a second opinion) in mid August (yes, unbelievably, this was the earliest appointment I could be given), but continue to have the abovementioned symptoms in the meantime. I have also been finding it difficult to hold back on the need to defecate and have had the horrible embarrassment of messing myself on two occasions now. My g.p. had done a rectal exam before sending me through to our local hospital and she was very concerned about the loss of muscle control in this area but the hospital doctors did not seem to share the same concern.

    I had another fall, albeit less serious, in December because I cannot bend/flex my ankle. My life has changed significantly as I cannot drive my car (unable to lift my ankle so cannot properly depress and release the pedals), I can only shower (no longer bath as I cannot bend my ankle into the position I need to be in to lift myself up out of the bath), etc. etc. I have found that the medical personnel are pompous, arrogant and puffed up with self importance. No-one wants to spend five minutes with me speaking to me about my symptoms and I would appreciate advice on preparing for my visit with the orthopaedic surgeon I'm to see in August (I thought I should perhaps send him a faxed letter ahead of time spelling out my complaints).

    From what I've read, it appears that I have nerve damage. What I want to know is a) will this be permanent and b) if not, what can I do to improve the problems I'm currently experiencing.

    Thanks heaps!

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    Old 07-07-2004, 09:43 PM   #2
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    mollybrown HB User
    Re: Nerve damage?

    Dear Kiwi Girl,

    I know my reply is long after you posted this but maybe there is time to still catch you.

    First you should copy your own message here to your word processor, then edit it so it is no longer a message on these boards but instead a description of just what you have been going thru the past few years.

    Next, TAKE THIS DESCRIPTION TO A NEUROLOGIST ASAP! This is the one doctor who will determine the cause of all your sysmptoms.

    You might not believe this but I have been going thru almost the exact scenario as you. Yesterday, after a month wait for an appointment -"quick for prior patiences" I went to see the neurologist I was sent to in January when the spine specialist I was sent to almost gagged at my MRI's of all 3 levels. The Spine specialist started to say "Well it looks like you might need some surgery" as he started sifting thru the MRI's of my Lumbar then Thoracic, then Cervical.

    When he got to the Cervical he went "Whoa, look at this. You need to see a neurologist at once because your head can fall off". I said, "Why can't you fix it?" And he admitted it was not up his court and needed to have special consideraration before surgery. The Neurologist recommended the best surgeon at NYU Medical Center and that's where I had 2 surgeries. One for my cervical C-3 with instrumentation and a donor bone. And the next for my lumbar L4-L5-S1, again with fusion (not my bone), a substance mixed with my own bone shavings called Agraft or something. Six screws, 2 bars, 2 plates, and two months of HellFire pain in back, I am finally comfortable with my back.

    I've been weaning off the pain meds (from 8 a day to 2-3 now). Basically, except for working on fuctioning a little less than normal, still needing Physical Therapy and rest periods, I feel pretty good and I am not sorry I had the surgery. The old back pain is GONE.

    Except I have the foot and leg thing just like you describe. Started right after the surgery in the hospital. I got the same "in time will heal" explaination. Meanwhile I'm screaming with lightning and burning pain, foot swelling and turning blue. Big toe feels like the skin shrunk or bone is growing out of the top. Feels like someone is twisting my leg from the knee down and something is holding my middle toes down and my big toe up! "In time" didn't help me. So I decided to insist with many calls and visits to my surgeon that something was wrong. Even though I like him and he did a great job, he just couldn't figure out what this could possibly be. He tried steroids with me, didn't help. Took more MRI's to "check" his work, then put me on Neurontin and said the nerve pain SHOULD go away with time. (The Neurontin takes about a month to start working and it really helps with the nerve pain now. Up-ed to 1800 mg at 600 3x a day)

    Well, the pain in my foot and leg has led me to chase any answer. With my insurance I can go to any specialist neccessary. So I went to my surgeon, my GP, a vascular doctor, and back to my surgeon. I TOLD my surgeon I made an appontment with a pain management specialist and an appontment with my neurologist again, seeing he (the surgeon) had no answer for my foot and leg problem. Do you know he tried to make me believe he "never had this problem with any of his patients." I doubt that. Maybe they just realized he didn't know enough to bother him about it.

    Well he thought it was a good idea to see both doctors. Then I TOLD him I was ready and IN NEED for Physical Therapy. Again, "Good idea" and gave me a script for three months therapy (which by the way are great sessions! The heat treatments and therapist manipulation of my foot and leg muscles and hot packs and water "bed" for my back feels great! It even helps the flare-ups in the foot and leg subside a little.)

    Sorry I got off the track:

    The pain management doctor knew IMMEDIATELY I had stage one RSD. He assured me during the first year (give or take a few months) you could put a stop to RSD's spreading and maybe even knock it into remission with treatment of therapy, nerve blocks and medicines. But he agreed with me, the neurologist was the one to see to rule out anything else due to the other symptoms of weakness, muscle wasting, foot drop, cramping and so on,
    just to rule out many other serious illnesses like MS, ALS, PLS, Multiplexes Deseases and so on.
    (Isn't it amazing the other doctors; surgeon, GP, vascular doctor, didn't pick up on the seriousness of the symptoms! How did they get their degrees???)

    The pain management doctor performed the nerve block/epidual style today in the hospital. It's not so bad. Once you yell oww, oww, and he knows he has the right spot (he takes his time and kinda walks away between the tries. You are not even aware he is "testing the locations and think he might be done each time, saying to yourself, oh, that wasn't so bad. Then he tries again and it hurts. At this scream, they knock you out with a mild sedation and complete the insertion of the steroid. My doctor did this today while viewing everything with an xray type gadget.

    I woke up 15 minutes later, rested in recovery with some juice and a bagel and then the hospital sent me home in a taxi. That was 6 hours ago and I feel fine except for a little achyness (about 24-36 hrs). Don't be afraid to have the epidural treatments. This Pain management doctor is one I used 3 years ago to treat my DDD pain, trying to put off surgery. Three injections gave me about 18 months relief from the constant pain to just occasional pain until it returned 2 yrs later. Hence, the above surgery stories.

    The Neurologist appt was yesterday. He said I did good to take myself to all the doctors and yes, he would focus on weather or not another ailment might be behind the muscle/nerve symptoms. He mentioned several very big illnesses we must rule out quickly. He wants an EMG test next week in the hospital, along with some thyroid tests and sugar tests (my physical therapist is also a doctor and had scheduled me for the EMG the end of July (only day he does it in the office.) The Neurologist said we need to do this ASAP and wants a comprehensive study done at the hospital. Probably it will be next week. I will return to the Pain management doctor next week also to see if I might need anymore blocks.

    Wow, I said too much already. (It feels good to vent, sorry.) But Kiwi Girl, you need to see a doctor who know his textbook stuff AND some patient skills combined. But mostly, please see a neurologist and bring him your message from the boards. It really explains all he needs to hear from you. Hopefully by the time you read this in July you have already been to one.



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