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Please Help

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:34 AM in Chronic Pain
I just had an EEG and EMG. I have been in pain for 4 years. My first neurologist told me I had M.S. I had a pic line in my arm so that I could give myself Solumedol everyday for 5 days.That caused a blood clot.I was put on blood thinner and had my blood checked almost every week for a year and a half.My second neurologist said he wasn't sure that I had M.S. and wanted to do a spinal tap but because of the blood thinner I couldn't do that.He said I should go to Vanderbilt Hospital in Nashville because they have a neurologist there that specializes in M.S. He told me I did't have M.S. but there is something else wrong.He looked at my M.R.I. and he thought I had had back surgery. I had to pull up my shirt to show him I hadn't. There was something there that needs to be fixed.From what I have read on this sight some people still have pain after the surgeries. I would hate to think that after going through surgery that I would still be in pain. I don't know what to do. Please help.


  • hi! :H i am sorry i do not have any answers for you. ~X( i am concerned and hope for the best outcome possible.. :D please do your homework and find out as much as possible as you can on your own... the answers are out there.. :? good luck and hang in there! :D Jenny :)
  • Thanks LuLu. I am waiting for my test results. They should be calling soon. Thank you for your support.


    Hi Sebring! I will give you my thoughts in a moment but I wonder if you are currently on either of the medications? If the Solu-medrol (a type of steroid) was for MS and the MS diagnosis was incorrect, than you should not be on it any longer. Also , Steroids in any form are amazing drugs and can be quite helpful for many things but can also cause severe damage with long term use.

    Also, what blood thinner were you on for the blood clot? Was it Coumadin or Heparin or another drug? Did the clot dissolve or travel? What is the status of that situation?

    As long as you are on any of these blood thinners/thrombolytics then you can't have any type of surgery because even a small scratch will bleed profusely and a surgery,even minor would cause you to bleed out if you are currently taking any of these types of meds regularly.

    So if it were me--I would first of all be off the Solumedrol (of course this is all with a physcians advice)and then I would see who ever it is that diagnosed the blood clot to see if it can be removed unless the blood thinner disovled it? If it was diagnosed by your Primary then have her recommend/refer you to a Cardiovascular surgeon to see if the clot can be removed and if you can be properly taken off the blood thinners.Some can be dissolved with medication and sometimes folks are on blood thinners for a long time, possibly indefinitely,I think.(???)

    Actually, knowing me, I would probably see a Cardiovascular surgeon, even if resolved to assure that in the event I may need back surgery or any surgery that it would be safe to go ahead with it.

    As for back surgery, generally speaking, tey always say that surgery should be avoided at all costs and used only as a last result because often the pain remains or often is worse after surgery. They also say all conservative treatments for back pain should be exhausted before considering surgery- this would include Physical Therapy, Aquatic Therapy, excercises, Pain Medications and rest- the "Gold Standard" used to be Percodan and Flexeril and rest for 3-6 moths months. These days, I am not sure since so many docs have issues with prescribing narcotics at all.

    Do you knpw what the EMG showed? The combo of an MRI and EMG would conclusively show nerve damage and it's location, so it's odd that it seems from your post that surgery is recommended by the MRI odd mark and not the EMG or combo of both unless that just wasn't clearly explained.

    However, in your case, if it were me. I would opt for the conservative treatment and exhaust all of them before even considering surgery.

    But MORE IMPORTANT you have to first find out what the object on the MRI is. I would have the MRI repeated in case it was a flaw in the imaging and have an ultra sound done as well. If it still comes up again, I would have a CT scan and if it still comes up I would have a PET Scan (The most significant difference between a PET scan and other imaging tests such as MRI or CT scan is the ability to detect changes in the body at the cellular level rather than after a disease has progressed enough to actually effect the surrounding tissue or organs.)

    If it still shows, or it does not but you still have pain I would see a Neurologist- NOT a neurosurgeon nor an orthopedic surgeon- I would see a Neurologist because surgeons always (typically) will suggest surgery and have been known to do unnecessary surgery's because they need a teaching tool, as was the case with my MOM and we walked out and it turned out she never needed the urgently recommended spinal fusion--she had referred pain from her hip and arthritis in her spine-neither would have required a
    back surgery let alone a fusion. Tis is not to say all are like that-in all professions are good folks and bad and there are many fine docs and surgeons out there-- the deal is YOU (WE) all need to be the well informed patient, be our own advocates and do all we have to to learn all of our options and to weigh out the risks and benefits.

    The Neurologist is a good way to start because he will want to find put what is wrong and why and not want to opt for surgery to find out what's wrong. Again, not sure what you have- I know you have had 2 misdiagnosis and "something" that needs to be fixed. What does that mean? What if the "thing" on the MRI is just an anomaly and the pain is from something else? This is what the Neurologist will do. If you want to expedite matters you could have the repeat MRI and an ultrasound done and take the films to your first appointment with the neurologist and have the reports sent to your primary so he/she can forward them to the Neurologist-but he still needs to see the films for himself.

    This is my advice to you. I do not think you should be considering any surgery until you have not only an actual diagnosis (unless you didn't share that - and if you do know I would still see a Neurologist and get at least a second opinion before considering ANY surgery-ever).

    I had a back surgery that was fine in 1985 but fully healed, drug free (minus non narcotic NSAIDS) &

    I was crippled and abused by a Butcher of a surgeon who was an EXCELLENT, HIGHLY REGARDED surgeon(you can see my post about 10 years later--regarding my pain and my current situation)

    So you never know how it will play out so better to learn all your options, get multiple opinions and when possible -avoid surgery unless you have exhausted all other options and have absolutely no other choice.

    Do your research, educate yourself on all options, get second opinions and never do anything that you do not understand, feel rushed into or do not know the risks vs. the benefits. In health care today you have to be your own best friend to protect yourself from unnecessary drugs or operations by being as informed as possible and knowing all your options and the pros & cons of those options.

    Best of luck-hope this helps you and gives you some things to consider.

    Take Care!


  • Hi Sebring,
    I am sure you have posted this some place else but what levels are you having pain? Keep in mind not always do issues show a emg study. Emg's are not fail safe to find nerve damage. They can provide both false positives and false negatives. How long ago did you have a emg study completely. If it was quit sometime ago, it maybe time for a new one. What part of your body was the emg performed on? Emg's are used in the clinical diagnoses of what is happening along with imaging and physical exam.

    I see it looks as though you have seen two neurologist and have been mis diagnosed by them. Neurologist don't just specialize in the spine. You may find it better to seek out a doctor even if it is a surgeon who specializes in the spine. If it is a good spine surgeon he/she won't jump into surgery. Most of them prefer trying all conservative treatments before jumping into surgery. So in know way, am I suggesting you need surgery, but rather a diagnoses as to what is causing your pain. Discograms and myelograms can also be useful in finding problem disc's that may not be showing on a emg or a mri. Finding the source of your pain is the first priority as it can lead to treatment and management of the pain.

    I myself have found it very helpful in journaling my pain and the problems it is causing. I always formulate a plan and list of questions when going to the doctor. It helps to keep the meeting on track and I don't leave with more questions than I had before entering. Don't worry about the mis diagnoses on the MS as it happens to many with spine issues.

    Furthermore don't read to many of the horror stories about surgery as there are many who have had successful outcomes with surgery and gone on to leading very busy productive lives and don't post anymore. But it is true surgery is not a magic pill and can take away all the problems. The surgeon can only take someone so far then the rest is on the patient. Do your research on selecting a surgeon. Ask other doctors who they would let operate on them. Go speak to the nurses in the hospitals they are affilated with. The nurses have the low down. Talk to some physial therapist they know who is still struggling and have lots of information on doctors. Of course they will all do off the record as they have professional obligations as well. You need to interview them as well and ask about follow-up care. Find out if they see you are who do you follow up with. Find out if you can get their email address. But before we put the cart before the hoarse here we need to find out what the diagnoses is and what they are suggesting.

    Further I have had no issues every getting narcotics prescribed either, as many don't either. Look in the pain medication forum and see how many are asking questions about types of meds. I think you have to have a very open relationship with a doctor and have faith in them and them in you.
    I notice you said they will be calling any date with the test results, do you have a follow-up appointment with the ordering doctor? Let us know as soon as you hear something it is so hard to wait. Not knowing is sometimes harder than knowing. Once you know what is causing the pain you can get a plan of action. Hopefully conservative treatment is all you will need and can get back on your feet again. But always know we are here and ready to listen. Take care and look forward to hearing from you.
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