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Off to the NS for a second opinion for scar tissue.



  • meydey321 said:
    Are you planning on going back to that psysiatrist? I do agree that the Lyrica would be better for you but unfortunately your insurance has thrown up a brick wall when it comes to that.

    As for me, I'm am trying to figure out if I should go through with having a pump put in. I need to function better than I am right now. I do have the option of having a lysis of adhesions and am scare about them going in caudally.

    Is the scar tissue causing you worse back pain like me? My doctor said that it is causing my back and nerve pain to be worse than before. Things are more difficult, and I understand what you're going through. Please let us know how you are; take care.
    Thanks for your response. The Lyrica hasnt been doing to much for me yet, but I dont look like I am drunk at least,lol. My insurance will cover it, but its just the highest copay, I shouldnt complain, there are alot of people without prescription coverage.

    My visit today was not a total waste, although we didnt really get anywhere. This doctor was a regular neurologist. He wants to do EMG's of all 4 extremities (tops then bottoms). He said he feels the left leg and possibly the right is explained by the scar tissue on the MRI, he does not feel that this is irritation that will go away or damage that will heal if we wait (that is what the OS and physiatrist say). However he said the burning areas are puzzeling to him, especially since they have now traveled to my arms, neck and chest. I had shingles years ago and this feels similiar, however its comes and goes from head to toe. I did schedule the upper extremities for the end of next week, but not sure if I will go thru with it or not. The areas that the PT checked reflexes on Monday are still burning today, I am not sure I want tons of needles at this point,lol.

    I really dont think I will go back to the physiatrist, but I wont rule it out yet. I am very hesitant to get any more injections too, just the thought of it makes me want to tighten up. The Lysis gives me an even worse feeling, I dont think I would do it. I will meet with my PM doctor next week to see what he has to offer.

    I know for me it may be jumping the gun, but I want to ask him about the SCS and the fentynal pump (fentynal is about the only thing I could get good relief with a relatively low dosage). I know if I got some decent pain relief I may be able to at least get back to work.

    Oh well, we will see what happens.

  • at least does sound like he's willing to look for other reasons by ordering EMG's. The arm, neck and chest burning is unusual. The legs, back, retention, sensation losses(I've got all of that also) could be scar tissue and nerve damage (I've got those too) but I agree w/everyone the docs are all fickle about when or if they will acknowledge this.

    The neurologist should have a check list if you will of things to rule out. I think 1 would be to check your neck and thoracic spine via MRI and however they rule out types of myeopathies(probably with EMG's and such I don't know for sure), MS, etc. Clearly I am not saying you have any of the above but these are things you can specifically ask about and ask what else the neurologist can rule out. Have you had EMG's in the past that they can compare the new one to? When he said he wanted you to do EMG did he explain what he's thinking along the lines of?

    I agree w/you if the patch worked then go for it while your getting tests and discussing other treatments like the pump and SCS. I had the SCS which was wonderful.I felt once programmed it could really work then I could work!!! I was optimistic for the 1st time in a long time but then it got infected and I had urgent surgery to get it out so that sucked.

    Keep your head up!!! you are not crazy and it's not in your head!!! sometimes it helps to hear that from those of us who can relate and it helps to tell yourself that once in awhile...lol Remember if the doc is an idiot and doesn't take you seriously there are others. I agree w/you about the doc doing at least a full neuro assessment if you've never seen him/her &/or if you're there to get answers, it should be done. Nevermind the $200 their charging. So for $200 we should get an assessment and 5 minutes...lol what a joke huh?

    Good luck, hope you have a good weekend
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  • I just went to see my PCP and complained about burning/tingling pain that starts in the arm pit and down the wrist. About three years ago, another doctor did some kind of test. The results came out fine.

    My current doctor wants to vitamin B12 check. I didn't stay for the blood work because I was in pain from the surgery. Anyways, she said B12 deficiency can cause burning feeling,. I am taking the B12supplement and it's working. or it was in my head. Once I went in for fatigue she figured out my problem before the blood work. she' s right of the time

    Just google search about B12. I was told that you can't ovrerdose them
  • It may be a couple months before I will have the pump trial. They usually start with morphine I guess, but if someone like me who has been on Fentanyl for a long time, might find that morphine isn't helpful since the patches are so much stronger. I understand the medication is going straight to the painful areas via the spinal fluid, and they can always change to something else if things don't work out. I hope the EMG goes well if you decide on going through with it. Hang in there and have a nice weekend.
  • Pettyme- The neurologist said something about peripheral neuropathy (very broad category of disorders), but I dont have anything obvious that would give that as a symptom. He even checked my sugar (quick test), thinking this was a diabetic neuropathy. The NS had mentioned RSD/CRPS, but that dx would be along way out due to the type of surgery I had to begin with (every once in a while they admit slightly that scar tissue can do this) but then they go back to saying no it doesnt. The tingling is calming down a bit with the Lyrica, but the burning is not, today my neck, hands and feet are on fire.

    teachertx- I will mention the b12, it has been some time since I had that checked. In the past it was fine, but who knows. Thanks.

    meydey321- Good Luck with your trial. I assume I will need to start back down at the bottom since I have been off LA meds since September, hopefully since we know what works from before he will be willing to head in that direction quickly. It took a long time to find the right combo, just hope for the best.


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  • you'd know if it was that so if you can stand a sheet on the painful areas then may be it's not that. I had a neurologist consult who said rsd and this is what the other 2 docs told me how they rule out this diagnosis

    you're right that is a wide spectrum of disorders. I'm sure they'll find some answers for you. does turning help the nerve pain at all? I just ask because that or a recliner seems to be consitent in the posts I read...

    Take care >:D<
  • Sometimes turning helps, but not always. More recently I had to go back to the couch and bed from the recliner. My intolorance seems to come and go, I cant stand a sheet but I am usually OK with my fleece blanket. I look like a little kid carrying my blankie everywhere I go,lol. I dont fit into any category, my PT has no clue what to do with me. I am off to PT now, but yesterday I had alot of pain, at least I can get up today without help. Who knows!!!
  • When you mentioned not being able to tolerate a sheet on your legs, I immediately thought of RSD. Has any doctor mentioned this to you?

    Oops, as I was posting this, I see that there was some discussion of RSD. I'll go back and read your posts to see if you answered!
  • FYI: If you are LOW in B12, you usually cannot make it up by taking supplements alone. You need to have it injected until the level comes back up to normal, and then you can use supplements to keep it there.
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