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Don't want to be a weinie whiner but

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Back Surgery and Neck Surgery
Because of a fall, had an MRI, then five steroid epidural injections over a 3 month period along with physical therapy. Nothing helped. I had a L4L5S1 decompression done December, 2008. No relief and again did PT for 8 days. I continually got worse, saw the orthopedic surgeon and he did another MRI then blew me off saying there was nothing wrong. It was suggested I see a neurosurgeon who said I needed a PLIF, same area. He said there was no difference between the first and second MRI. That surgery was performed 5/18/2009.

I'm having a lot of problems, though the initial complaint has been resolved. Primarily neuropathy of the right calf, shin, ankle and foot. Burning pain in the toes and arch of the foot. Also have numbness and tingling of the upper thigh if I stand up too long or walk too far. Strange cold sensations on the outside of my right leg from the shin up to the thigh.

Left leg is weak, with muscle pain in thigh and calf and it was suggested that there was either a bone fragment or hardware pressing on a nerve there. A CT scan is planned for the near future.

I still experience pressure at the surgical sight. Nasty looking thing considering the neuro did his surgery in the same site and removed a lot of scar tissue.

I took samples of Lyrica because my insurance denied it and wanted me to try Gabapentin. Did the Gabapentin eventhough I suffered side effects years ago. This time, there was shortness of breath and anxiety attacks.

I am on no medication at all. Currenty in another battle with my insurance to cover the Lyrica, which seems to be the only thing that works other than the darvocet I've taken when I'm really miserable.

I am only 4 months post op. Am I being a "weinie whiner?" Am I expecting too much too soon. I walk 20-30 minutes daily and try to be as active as possible.

I don't hurt all the time. But because I'm not on any medication, I'm pretty miserable when it does flare up.

Any suggestions, advice or recommendations would be so very very very much appreciated.

Blessings, Kathy



  • I am awaiting TLIF surgery. I take Davacet on my better days in the morning to get myself to work. On bad days and at night I take Hydocodone (Vicadin), Soma (muscle relaxant) and Klonopin (helps with sleep and seems to calm the nerves down somewhat- also used by some as anti-seizure drug) If you are having this many serious problems, you need to aggressively pursue further treatment from your doctors. In my experience, many times you have to rattle your cage and be polite but firm and persistent. Being passive will get you nowhere. Any good doctor will work with you until serious problems are resolved and/or refer you to another doctor who can help. Any doctor who blows you off needs to be kicked to the curb. At times, I've had to go through 5 doctors before finding a good one. Don't give up and don't go to doctors who won't listen or work with you.
  • I don't think you're whining. To me, Darvocet is just about as worthless a medication as they can come up with. I don't know how some people find it sufficient for dealing with pain, but it does nothing for me. Lyrica did help me a lot with my nerve pain. I occasionally still need it when I have a flare up. Fortunately, I've only had two major flares since surgery and they were largely self-induced (doing too much).

    If you are still having problems, you doctor should be listening to you. Did you have all three levels fused? I did and I know I'm still recovering at 10 months out.

    All the best,
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Like any medication, Lyrica works for some patients, but not for others. Some nerve pain simply does not respond to any medication.

    While I agree that it is important to find a doctor that will work with you, it is not that simple after you have had back surgery. Four months is early in the healing process. What you are going through is, unfortunately, not that uncommon, and it is also not uncommon for a surgeon to react the way yours is doing. They are usually not in a big rush to run a lot of tests to try to get to the bottom of the problem as the majority of cases resolve eventually. I think most surgeons will listen to complaints and often order one MRI several months after surgery to see if something is going on, or order X-rays to see if hardware is in the right place...but if these tests do not reveal anything, they usually advise to wait and see.

    In a way, what is their alternative at this point? Most patients would not be willing to go back in for more surgery without having a good, documented reason to do so, and from what I can tell, insurance companies (in the US) are not going to OK exploratory surgery so soon after major back surgery. Also, nerve pain is very difficult to diagnose -- well, easy to say "you have nerve pain" but impossible to say "WHY?"

    It sounds like your nerve pain is running right along a typical pathway for L5 and S1 nerves. You have had two surgeries within nine months. I imagine those nerves are still seriously annoyed by being disturbed -- it is entirely possible that you still have some inflammation going in. Have you had any steroid injections or taken an oral steroid since surgery? That is a fairly common place to begin.

    If I were you, I would continue to mention your pain to your surgeon and keep his attention on it, but I think you also need to be willing to wait it out for awhile. Keep walking as that is so important to your recovery. I would ask about having some steroid to see if that helps any. I don't think anyone on this board would think you are whining....but you may need to be a little more patient and be prepared to wait things out for awhile.

    Hopefully things will gradually start to improve. It can be a LONG process, particularly if the nerves have been compressed for awhile.

    xx Gwennie
  • Guess, I'm not as well versed as everyone here with the knowledge and information.

    It was the first surgeon who blew me off. Of course, after the surgery, I heard all the horror stories about this guy. Just wonder why no one filled me in on him. Particularly my niece who worked in the system and whose office referred people to the neurosurgeon. I was lucky to find someone who would operate on me again, so do feel blessed. I've been working with the neurosurgeon's PA and think it's time to see the doc. I'm the type of person who feels others need to see the doc and I can see the PA.

    I need and want answers and that's why I posted here. Not a lot of hysteria as in other sites. Just needing to know if I'm expecting too much too soon. The PA did say the neuropathy usually takes 2 years to resolve. Something about 1 cm or mm recovery a day.

    Reading from my post-op notes and understanding very little: C-arm flouroscopic guidance. Subperiosteal dissection from L3 to the sacrum allowing for landmarks and identification of the remnant dorsal elements of L4 and L5. The medial aspects of previous depression defined and were widened down to the level of the pedicles bilaterally.

    Attention to L4-5 interspace where the disk space was incised. Diskectomy was accomplished with shavers, rotating cutters as well as scrapers and straight and angled curettes. Was dilated to 8mm and 8x22mmg tangent bone packed with bone morphogenic protein placed bilaterally with autologous bone and bone morphogenic protein centrally. Similar procedure done at the L5-S1 disk space with 8x22mm tangent bone placed.
    6.5mm diagmeter screws, 45 mm at L4 adn 40mm at L5 were placed. 7.5mm diameter screw x 35mm length was placed at the sacrum bilaterally. They were connected by 50mm rods with torqued endcaps and compression crosslinked. Fibular strut and bone morphogenic protein was placed laterally and a transverse-lateral 360 fusion performed.

    I am needing medication in any form. Can't take ibuprofen because I lived on it prior to seeing a doc for my back and it destroyed my guts. Hypersensitive to meds. Finding Lyrica worked was nothing short of a miracle for me and now the insurance company is fighting me. The darvocet is better then nothing. But only have 4 left. I take it at night so I can sleep and I seem to do better the next day and am able to do my exercises and walk a little better.

    Of course, something else I forgot. I tried to wear a bone stimulator for months and wasn't able to because of an allergic reaction to the adhesive on the electrodes. It's been over a month and I'm still breaking out and itching. Someone mentioned the possibility of being allergie to the titanium and the only way to resolve that is to remove all the hardware.

    I hope to get more information from my doctor and will share what he thinks. But if anyone has anything else they can share with me, that would be great.


  • I see you posted while I was writing my post to you. Regarding Lyrica -- usually if you try gabapentin for a month and have no relief, your doctor can them say the trial was a failure and you need Lyrica.

    My insurance OK'd Lyrica when I had my fusion. I took it for six months and stopped. Recently, I wanted to try it again and the company refused. So I did the gabapentin trial; then my surgeon could in good faith say I had tried it and it failed. He went to bat for me, and I was given Lyrica. So, talk to your surgeon.

    Did you have any period after the fusion when you were somewhat pain-free, or have you had this nerve pain all along?

    Other things to consider: the BMP overgrowing the area and now pressing on a nerve, or scar tissue that has formed in such a way that it is effecting the nerve or nerves.

    By the way, if some people seem more informed, it is only because we've walking down the road a little ahead of you, and have had more time to absorb information as we go on our spinal journeys!
  • BMP, don't know if that could be it. I had x-rays twice post op to make sure everything was in place. PA wanted to do a CT Scan and because of insurance deductible for the year, I decided against it, hoping things would clear up. Dread the possibility of another MRI. Claustrophic to the hilt and contrast makes me ill.

    No steroid injections or oral medication post op. Prior to first surgery, had a second set of shots and the doc didn't numb the area well enough and sent my legs into spasms then over numbed me. I sat in a wheel chair for 2 hours waiting for it to wear off. So, doing the injections..no. Can't take oral steroids. Heart palpitations and elevated bp.

    There was a period of time I had no symptoms at all. Decided I could can tomatoes and was on my feet for quite a few days at a time. Then it all started again. And getting worse.

    Called my pcp's office about the pre-authorization for the Lyrica and they've not heard anything. If they deny it again, I will get the neurosurgeon back in the picture along with my pcp for the meds. And I'll also get involved.

    They said I had a tremendous amount of scar tissue from the first surgery and the neuro removed a good bit of it.

    If there are bone shards affecting my left leg with the weakness, do you have any idea if they would dissolve over time? The thought of doing another surgery terrifies me. The PLIF almost did me in. Touch and go for a day.

    I am grateful for the knowledge anyone and everyone shares with me. Guess it's going to be the best way for me to learn. You're all the best and I'll gladly walk in your footsteps then share my experience with others too.

    Blessings, Kathy
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