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shocked by what my doctor said

AnonymousUserAAnonymousUser Posts: 49,321
I saw my neurosurgeon Friday and brought with me a ct/myelogram that I had had done about a month ago. It said in the report... "clumped nerves, possibly Arachnoiditis." I also brought an MRI that I had done in October. That said, "There's an abnormal signal on the S1 nerve root that highlights intensely." My neurosurgeon had told me a couple months ago (after seeing the MRI originally) that maybe after 6 months, he would have to wrap that nerve. (He was referring to the S1 nerve root.) There was nothing else on either test I had done.

Well, to my surprise, on Friday, when I asked him about this (nerve wrapping), he said he never said that. He then asked me where I heard that from and said that there is no such thing. My mouth dropped. The fact that he had said this back in Oct. or Nov. about wrapping my nerve got me searching the net for more info. I found things about Duragen, fat grafting, etc. I spent a lot of time searching and learning about the outcomes of these procedures only to hear that my doctor never said anything. Talk about humiliating! I'm so afraid that he will tell my family doctor that I'm imagining things or that I just want another surgery (which is crazy - who has time or money for more surgery)!

Anyway, I'm hoping for a 3rd opinion now from another doctor, since 2 have said they can't help me. At least the 2nd opinion doctor said I DID have scar tissue causing me pain. But he said he couldn't help. So..... onward.

I'm in physical therapy, which made me worse for awhile, but now I'm back to normal (normal pain, that is). And, yes, it's making me stronger, but the leg pain persists.

Anyone ever have a doctor say something like this to them? I know I didn't imagine what he said about wrapping my nerve. It actually made me a little nervous since I'd never heard of it before.

Any comments welcome!!

csp
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1

Comments

  • Maybe it was his twin brother? No really I believe you. After hoping for some relief of pain and not getting it and in the meanwhile make you look like he didn't say it, very odd. But I had a odd pm Dr. and I got another one so it's best you have that 3rd opinion and have some hope. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I believe you, how can you hear something and research it if it was never mentioned to you? That is why it is always a good idea to take someone with you if possible. Is it possible to get your records from that doctor? He might have noted what he said in your chart. I had a pm doctor who was like that, he would say one thing and when I went back he would act like he never said that. I no longer see that doctor.

    Sharon
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  • It's very odd that some doctors do that. Are they just thinking out loud or something and think we don't hear them? Do they have Alzheimer's, but have neglected to mention it? It's very frustrating and makes us look bad. Unfortunately, this doctor did my surgery in May - 08. And he has a great reputation for being one of the best surgeon's in town. If people ask me if I'm sure if I heard things right, I wouldn't blame them. Who wouldn't believe a doc. over a patient?

    I guess I could request my records. I'm hoping he sent them to my family doctor. He did ask who ordered my CT/myelogram, and I told him. Then he said he'd send his report to her. So, I guess she'll have them.

    The funny thing is... I was always told he had a bad bedside manner, and I had seen it before my surgery, at the hospital. But, I kept trusting him to be understanding, since he had mentioned this "nerve wrap" to me.

    I have physical therapy this Wednesday, and the therapist has also heard about his bedside manner. So, I can't wait to tell her about his comments to me. She will more than likely believe me and maybe even have some advice.

    Thank you for understanding.

    csp
  • For your own piece of mind, you could request the office notes for the day of the visit where he mentioned "wrapping your nerves" if its really bugging you. I had a laminecotmy and fusion L5/S1 in December 0f 06. I got better for awhile and then it was back to square one, painwise. My surgeon suggested a spinal cord stimulator. (Those familiar with my situation know the problems I've had with doctors in this endeavor) But an SCS can help folks with nerve pain in their legs. That might be a way to go. Good luck. Susan
  • A friend of mine who suffers from adhesions every time she had surgery recently had knee surgery and she told me the surgeon applied some new product (maybe not officially used for this yet?) to the nerves that is supposed to keep them from forming adhesions. I do think there is some product out there for scar tissue. Sorry I don't know more! Good luck.

    I also have had several opinions re: legs/back MUCH worse following laminectomy last May and they all say nothing they can do and suggest a spinal cord stimulator.... You just can't win, it seems sometimes...

    I hope you find some relief, even if just through drugs. I know I hate that prospect because I want to be conscious while I'm still alive!!

    Good luck! Rosa
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  • A friend of mine who suffers from adhesions every time she had surgery recently had knee surgery and she told me the surgeon applied some new product (maybe not officially used for this yet?) to the nerves that is supposed to keep them from forming adhesions. I do think there is some product out there for scar tissue. Sorry I don't know more! Good luck.

    I also have had several opinions re: legs/back MUCH worse following laminectomy last May and they all say nothing they can do and suggest a spinal cord stimulator.... You just can't win, it seems sometimes...

    I hope you find some relief, even if just through drugs. I know I hate that prospect because I want to be conscious while I'm still alive!!

    Good luck! Rosa
  • That's exactly how I feel, like my doc's accusing me of making something up in hopes that he'll try something new or even invent something. I have seen things online about preventing adhesions. Duragen and fat grafts are some of the things I've read about. The funny thing is... I would've never thought of looking for "nerve wrapping" until he mentioned it.

    Here's a question: If you (anyone on here) ever had a doctor say they didn't remember what they said and then asked you, "Where did you hear that from?," would you tell another doctor? Or keep it to yourself, since possibly all doctors stick together. I'm still not 100% sure how to handle this comment from him. I've just decided not to ever ever ever go to him again.

    csp
  • Thank you for your information. That info. is good to know. I'm glad to hear you have happy nerves now. Does that mean, dare I say... that you are in LESS pain that before surgery? That would be awesome if it's true!

    The fat wrap totally makes sense. I wouldn't want that used for sure. And now, I'm not sure about using anything. Your doc would be the one to give honest information, so I'm glad you talked to him. He's about the only one I trust right now. Singulair, I would try in a heartbeat!!

    I faxed my MRI and ct/myelo. over to SMISS here in Mich. The gal there was so so so helpful. She said the doctor would look at the tests and let me know if he would be able to help me. I sent them my insurance card copy, reports and a listing of my pain symptoms and what makes me feel better. I'm just ecstatic that the doc would be willing to look at something faxed over before having me drive all the way out to see him. This has made my day. I can't wait to hear from him.

    I also have a second opinion on my myelogram this morning. I'm looking forward to hearing what another doc. has to say about the clumped nerves. Maybe he'll order another test - who knows. I just to hear something positive, so I can have the slightest in hope.

    If you're up and writing, I'm assuming you're doing a little better than when you wrote about the bulge. I hope that's true. I said a prayer with my son last night about your pain. I'm sure God was listening, so I hope he begins working on you right away.

    Thank you again for taking time during your painful time to explain things to me about my situation. You are truly a stronger person than me. I think I would only be thinking of myself if I were you.

    We will keep praying.

    csp
  • Maybe I'm just not as patient/kind as you are, but if my doctor told me something one day and I asked him about it a few weeks/months later and he said, "No, I never said that." I'd confront him about it--First off, he's on your dollar bill, maybe not directly, but he's getting paid to offer you medical advice/try to get you better.

    Don't get me wrong, Doctors have a rough job--they are around people who are suffering all day. That being said, if they can't take it, they should have never entered the business. A neurosurgeon especially has had 5 years of residency training--and has seen his share of sick patients and should be held accountable for anything and everything he says.

    You obviously know you that you are in the right and you seem pretty sane to me. As a neurosurgeon, I'm sure he would have recognized if you had a mental disorder--if he hasn't said anything about that, I'm sure if you insisted that he had mentioned "nerve wrapping" he would believe you. If he still insisted the he never said it, excuse my French, but I'd tell him to go wrap his nuts around a scalpel, flip him the bird and walk out. Your health is more important than a doctor's feelings.
  • SteveA,

    I totally agree with your response. I feel the same way. This was obviously the last time I will be visiting that doctor. And, yes, I did, in fact, wrap his nuts around a scalpal. But before I flipped him off, I took that scalpal, made a nice little slit, and told him... "Ooops, I don't remember doing that." (Just kidding of course.)

    I saw another doctor this morning, and once again, I have lots of hope. He spent lots and lots of time with me and is continuing with my care. A nerve block is next - for diagnostic purposes only. Then, maybe on to more surgery. But, I have to do a lot of research on fusions versus leaving things alone. So, I have a lot of thinking to do.

    Your sense of humor made my day today! :)

    csp
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