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Anyone been sent to a neurologist ...

jellyhalljjellyhall Posts: 4,372
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical
Has anyone been sent to a neurologist to determine what their various symptoms are due to?

I have seen 5 different neurosurgeons now (a consultant and 3 registrars in his clinic, and another consultant for a second opinion). Two have said it is time for surgery and two others (one a consultant) said we would wait, although they didn't say what we would wait for.

Yesterday I saw another registrar after waiting 6 months to see the progression, and she wasn't even sure that my symptoms are coming from my neck. She wants to get me referred to a neurologist to make sure it is not all due to some other problem. Seven weeks ago my second opinion consultant neurosurgeon said it was time for surgery due to the cord compression.

I am so confused and very fed up!!!
Here in the UK there will be a VERY long wait to see a neurologist.

Has anyone else seen a neurologist to determine what is causing their symptoms?

What tests did the neurologist do and was it worth seeing them.

I don't want to have surgery if it is not my neck causing the problems, but everyone else has said that the symptoms are due to the compression on my cord, the compression of my nerve roots and the facet problems due to degeneration (spondylosis).

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Comments

  • Well, have you had a MRI? That's really the only way to make a definitive diagnosis. I can't imagine a surgeon proceeding with surgery without seeing a MRI.
  • If a neurosurgen already did an mri and he was able to see what the issue is and confirmed his findings and thinks surgery is needed then if it has not got beter then more the likely its the same issue,

    If another dr said to wait with surgery i am sure he is just being concervative to see if symptoms might get beter in time, Thats the answer to your question what that ment and reason to wait,

    If the symltoms have got worse then i would go talk to the original dr who made the findings and posibly have another mri to see if its the same or worse now,

    Waiting game might be over with if surgery might be the only answer, Compression on the cord is more serious then just the compression on a nerve so it could be serious enough to look in to if its time for surgery or not,

    If you can get 2 neuro dr,s to agree on the findings then good chance thats the issue,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
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  • jellyhalljjellyhall Posts: 4,372
    edited 06/24/2012 - 8:52 AM
    Yes, I have had several MRIs of my full spine, and they show cord compression in my neck and thoracic spine. (My lumbar spine is now decompressed and fused.)

    It is the compression in my neck that they have been concerned about in the past. They have all said that my symptoms are from my neck apart from a tightening band and spasms around my abdomen, which they say is from my thoracic spine.

    This new registrar yesterday seemed to want to get a neurologist to check what is going on. She didn't say if there was something in particular that made her feel this was necessary, but she went and spoke to the consultant, who obviously agreed with her. He didn't come and see me. He has been overseeing me for over 18 months, but I have only seen him once. He has always said it is my neck before yesterday. I am very confused, but I guess it is better to be safe than sorry.

    Alex, I have been told that my symptoms won't improve because I have osteodiscal bars that are pushing my cord backwards into the back of the spinal canal and indenting the cord. I have no spinal fluid around the cord at these two levels. The last neurosurgeon who said it was time for a 2 level ACDF told me that an accident or even a fall could leave me with permanent cord damage.

    I really don't know what caused this latest registrar to doubt what is causing my symptoms. She did tell me that I should not do any sports and to take care because I have a lot of degeneration in my neck, and showed me where the cord is being compressed.

    A Pain Consultant did mention back in October, that I had a lot of symptoms and that if it wasn't conclusive that it is my spine causing them, then he would refer me to a neurologist to get to the bottom of things and rule out MS and some other very rare conditions that cause some of my symptoms.

    I suppose it is best to get things checked out to be on the safe side. I am interested to know exactly what the neurologist is likely to do. I have already had EMG and nerve conductions studies done, back last August. They showed compression from my neck.
  • Wow you poor thing. You have cervical and thoracic issues and they don't know where to start so they are making sure you don't have ms..... I was. Checked for ms at my request since my cervical headaches and eye pain was so bad. I had a brain MRI and my pcp said it was normal. I read the report it said I had lesions so I showed it to my NS and when we were doing a ct scan mylogram he had them draw my spinal fluid and send it in. It was negative.....

    I have heard that health care across the pond is a whole different game. I wish you luck.

    Julie
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    I had a chiro send me to a neurologist way back in the late 70,s or early 80,s.
    That's a long time ago and it's hard to remember, but I think they prescribed a tens unit and some kind of a non narcotic med. Everything was to avoid surgery. And all a temporary fix. I don't think I had a MRI at that time.
    One pill masked the pain so well, that I injured myself more. 'cause I felt so good.
    Because of that I've refused to see one ever again. It was a work comp deal and I'm in the U.S. so I figure things are quite a bit different here.
    good luck,Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
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  • I had a suspected TIA 6 weeks after my lumbar fusion, when I had vision disturbance and lost the ability to read. After that, I had various tests while I spent a day in hospital. They did a brain CT scan, cartoid artery ultrasound and various other tests including blood tests. Everything was normal so they told me that it must have been a migraine.

    This may be one of the things that is concerning this registrar, but I suspect there are some other things that she is not happy with.

    I hope that I don't have to have my spinal fluid checked. I hate needles!!

  • Jellyhall,

    I had alot of symptoms from my cord compression, balance problems, atypical reflexes in all four extremities, poor concentration etc.

    My NS said it was from something called "Cenral cord syndrome"(google it), that explained alot of what was happening and why, and helped me understand the need for immediate surgery. Mine was a traumatic injury and a fracture piece was compressing the cord.

    5/10/2010 will be the 2 year anniversary, it has tkaen me long while, but have had multiple surgeries for the other injuries.

    I did also fx T5, L345 at the same time, no surgeries there, but the thoracic one does cause alot of problems that were tough to sort out as to whether it was cervical, thoracic or my left shoulder, which was crushed.

    I am glad I had the ACDF45, it resolved alot of symptoms immediately for me. I still have other issues, but I don't worry about losing my ability to walk now.

    I take a gentle yoga class, swim, and take walks 4-6x a week, what a blessing. Even off the major narcs now.

    I hope you can come to a decision that will be all you need it to be. Good luck at your next appt.

    Been there,
    Dee

  • for your kind reply and sharing some of your story.

    I saw my physiotherapist today who was amazed that after all this time, and after so many neuro appointmentsss, they are now thinking that they should check to see what is causing the symptoms. Up until now, everyone has said it is from my neck.

    I also got a letter today with a follow-up appointment with my second opinion neurosurgeon who said that it is now time for surgery to deal with the cord compression. This appointment is to ask him all the questions that I was too stunned to think of 7 weeks ago at my last appointment.

    Before my spine problems, I only used to go and see my doctor about once in three years. Now I have so many medical appointments for so many different problems. I feel like a hyperchondriac!

    I'll let you know when I make a decision.

  • Jellyhall, I haven't been on lately...8 wks. post op now and few steps back and few forward but I'm getting through my recovery okay. I thought you were scheduled to have your surgery so I must have misunderstood. I don't understand why you're having to see so many doctors. When I got my two neuro opinions and was still in shock about my neck situation I thought to myself how I could just keep going to doctors and getting more opinions and I don't think any of them would be the same opinion. I remember thinking that going to endless doctors for opinions would drive me crazy. My 1st neuro wanted to do 3 levels and the 2nd neuro (who I decided to have do the surgery and who I had much more confidence in) said he would do only 2 levels and be less aggressive than the 1st neuro. What they did agree on was my MRI and the condition of my neck. Your case is much more complex than mine with your additional back situation and your stroke history, but our neck symptoms are very similar. Both of the neuros I saw agreed that my foot, leg and upper body symptoms were due to my cervical myelopathy, and both warned me like you, that if I were in a serious auto accident or took a bad fall I could have permanent paralysis so I felt like I had no other choice but to have the surgery, so I just jumped in. They told me I had no alternative treatments available and would just get worse. Is that what your neuros are telling you? I wish you could find a good spinal clinic where you have confidence in your doctor's opinion now that you have many other opinions too. It can be so confusing for a patient if there are too many opinions and your course of treatment should be consistent. It just sounds like so many doctors are involved in your case and your frustration must be through the roof. Stay in touch and I hope you can come to a decision soon. I feel for you that you're being run through the ringer like this. Big hugs,
    xoxox
    Meg
  • Hi Jelly!

    I saw a neurologist when I presented with obvious cervical myelopathy symptoms. He performed a nerve conduction study on my right arm, which supposedly would tell if my nerves were impinged or if I had carpal tunnel syndrome. The results were negative (I had an MRI a month later showing a myriad of things such as bulging discs and severe stenosis). Additionally, even though I was unable to lift more than 5 lbs and was pretty much disabled for over 6 months while trying to be diagnosed, he saw no need to recommend me for disability despite knowing I needed a surgery that has a long recovery period. My surgeon that operated on me last month couldn't believe I was even able to walk around after seeing the damage inside. Thus, I would not recommend the neurologist. I hope this all gets resolved for you >:D<

    Cheers,
    Robin
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