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whole new direction -- frightening!

jay911jjay911 Posts: 540
edited 06/11/2012 - 8:28 AM in Chronic Pain
Over the past year I've made countless doctor visits and had many procedures done. Only one procedure was effective, my very first ESI. My frustration has been growing and I have been worsening steadily...slowly until December but at a quicker pace since then. My PM doc told me last month that he had exhausted all of the things he could do and he was referring me to see a surgeon. The first visit was with an orthopedic surgeon who was validating my parking when he walked in the door. He told me that mechanically I was fine and no surgery would be beneficial. Needless to say I scheduled a second opinion.

Yesterday I saw a spine surgeon who agreed my previous MRIs and x-rays showed everything to be normal. Then he said something that surprised me. I've dealt with this long enough, time to get serious about finding the cause. We then spent 2 hours (!!!!) discussing all the previous procedures and exactly what affect they had. Then we did a bunch of neuro tests. At the end of the visit he is not convinced the problem is my lower back and has ordered an MRI of my thoracic & cervical spine and brain. He did find some abnormalities in some of my tests and started asking if I had a brain injury in the past. He then put someone else off next week so I could see him again.

Now I'm a bit frightened as things have moved from focusing on chronic lower back pain & sciatica to my brain as a source of neurological issues. Holy cow, I don't even know what to think! Has anyone else gone through anything similar? Or even had things change in such a drastic manner?


  • Hi Jay,

    I've not had a similar experience, but on the positive side... you have a doc who sounds determined to help you find answers for the pain you've been experiencing! I think you're really lucky to have found a doc who may have the answers! Now on the brain/neurology of the situation... i am not in the same league as a medic by any means... but I THINK.... if you had a brain injury (fall, accident to the head) and IF there was a lesion or bruising to a particular part of the brain... it can mess up the messages that the brain sends to the body. Maybe its a part of the brain that controls pain messages???? i'm guessing, but may be worth googling and researching what different parts of the brain do...

    I hope whatever the answer is... that you get an answer, and that it helps sort out your pain!!

    Good luck!
    L4-L5 fusion 1998; ACDF C4-6 2008; DDD
  • Two years and this is the first doc to say "You've been dealing with this long enough, we need to figure out what is causing it." I guess I should be happy with not being blown off before even talking to him.

    I've not had a head injury, which makes me think medical. I'm not even going to speculate there, not a lot of great choices. But how can you keep from letting your mind wander. This just sucks, I don't like where this is headed...

  • I've been through this only in reverse. I've had so many diagnoses and have had surgery and am now approaching yet another surgery. And yes they thought my lower back pain was being caused by a condition in my brain called Chiari Malformation. I am in NO way saying that is what you are dealing with but I'm glad that someone is working their way up to try to figure out your situation. Your spine is so important and can cause some strange problems up and down and vice versa. So hang in there until after you get your test results and DO NOT stress over it. It may be an answer to a prayer for you.
  • The good thing is that you found a doctor who is interested in finding the root cause of your problem! That's the golden goose my friend!

    Hang in there,

  • Sorry haven't been on much, I've been fighting waves of nausea for the last week. Thanks for the words of encouragement everyone, it helps immeasurably! Anyway I made it in to the MRI this morning, tomorrow is my next doctor appointment. I sure hope we can figure out our next steps. "C" you're right, at least I've got a doctor that is moving forward.

    So I'm no expert in reading MRIs but even my untrained eye may have spotted a problem in one of them:


    Apparently this answers charry's question whether size is important. Also explains why the MRI didn't take long! =))
  • well....at least you havent lost your sense of humor along with your lunch!

    just kidding....keep up the positive thoughts...hang in there...wishing the best of luck for ya!

  • dilaurodilauro ConnecticutPosts: 9,865
    Not knowing can be one of the most frustrating things to go through. If you knew what the situation was, what you have, then at least you have some way to start dealing with it.
    But when you dont know, the mind can wonder and the mind can do a lot of wandering.
    It is important that you have a doctor that is willing to continue working with you to find out what your situation really is.
    I am sure its a kick in the butt to hear all along that they believed it was one thing and then almost an about face to tell you something else.
    Stay as positive as you can. Thats where the mind can be your best ally
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Ron that's it exactly. Having some direction is better than not knowing anything. And I think my wife is having a harder time with all this than I am. She wanted to know how I could joke about it, I told her that I'd probably go crazy if I didn't.
  • I do too, even have a bart simpson tattoo, wearing firefighter gear and holding a fire hose. B)

    I actually went in on Friday. We knew my previous lumbar mri was okay, surgeon said he could see some things on the right side though and didn't understand why I don't have problems on that side. He did find bulging discs C3-C4-C5-C6 and stenosis in the same area, he thinks that could be my problem and is having me go in for ESI in my neck. He also said I should see a neurologist.

    I guess the good news is that I am tumor free, no Chiari Malformation/syringomyelia and no MS or ALS.
  • Well not my brain but there is definitely stuff in the c-spine. I still am worsening, I hope we can figure something out. The surgeon said that he sees people and doesn't understand how they can even walk. I'm on the other side of the curve. Spine doesn't look that bad but sometimes is debilitating. At least he did see stenosis and herniation, that is a step towards resolution. Next visit is Monday, scheduling the c-spine ESI this month.
  • It seems to me that there are so many people who, starting out with lumbar, thoracic or cervical spine problems, begin to later have problems with other areas of their spine. I guess I can understand it considering how improbable it would be to only have stenosis or ddd in one small area of the spine. Wouldn't it be loverly if we could just get that one area fixed and it's over forever?

    Take care of yourself Jay. You have been through a lot and I hope they can take care of these new issues noninvasively.

  • I still do not have any symptoms to point to the c-spine, all points to lumbar. Of course if there is any issue at all, then you can see symptoms anywhere below that point I suppose.

    I'm all for non-invasive but as I worsen and deal for more and more time I am much more open to other things.
  • I am so glad to hear there is no tumor, syringolmerleoia (or what ever it was you said), no MS or ALS. At least you know you have the c-spine issues and your doctor is awwwesome for being diligent to find the root.

    It's always good to "know thine enemy". At least now you know what to fight!

    Also, an attorney I worked for had c-spine and l-spine issues. He told me once when he had an ESI in the C/Spine area that it actually helped his lower back. Not sure how all that travels around, but if it worked for him, maybe (hopefully) you'll have the same success story as he?

    Good luck Jay!

  • Someone once described my back as a bicycle chain and if you have a kink in it you will get problems else where too.

    I used to have horrible pains in my neck, not been too bad since my fusions and thoratic spine.

    I think you either compensate or the pain refers.

    I also think that it sound like you have a good doctor! Lucky you!
  • Thanks everyone for reminding me that my docs are working for me right now. I'm so absolutely miserable that I am trying to survive minute by minute it seems.
  • My Cervical MRI mentions chiari malformation, but my Primary and NS neither mentioned what that was. We went right into the cervical discs he needed to remove, (ACDF Jan.29,2009 two level.) I have wondered what it was but hadn't asked about it. I figured it must be nothing since they hadn't said anything yet.
    MRI reads:
    Low position of the Cerebellar tonsils indicating Chiari Malformation without cervical medullary kinking.
    Anyone have any info. on this topic?
  • jay911jjay911 Posts: 540
    edited 06/17/2016 - 2:10 PM
    Hi Dinky,
    Chiari malformation is where the brain encroaches into the spinal canal (where they meet in the base of the skull). This can cause pressure on the spinal chord and the associated nerve issues from that pressure.

    Here are a couple sites I found interesting:
  • Thanx for answering. I go to NS 6 week check up Wed. 11th. I plan to bring that up on my mri. The mri was done thru my primary Dr. and then referred to him. He looked at Mri but don't know if he saw the radiology Report where that is listed. I don't know if mri is saying i have that or just mentioning it for some other reason. Cant figure out lango on those tests. Thankx again! Dinky
  • Be sure to ask about the chiari malformation. It can be a very serious condition and it is uncommon enough that many spinal specialists are not sufficiently trained to handle it. I don't mean to alarm you. It is a condition that some people are born with. In many cases it does not cause any symptoms and people do not realize they have it until they are tested for something else and it happens to show up.

    Don't let your doctor just brush it off and bypass your questions. Press him until he convincingly tells you what is going on -- whether it is minor, or whether you need to see a specialist about it.

    Hope your recovery is going along and that you are healing well.
  • Thankyou so much for the advice! I have been kinda wondering what that is on the mri and no doctors have mentioned it yet. I will ask about it day after tomorrow for sure.I've learned to take notes of what all questions to ask at appointments. They don't usually give enough time to think of all the questions you are wanting to know about,and my memory has gotten so bad.... Alot of times its a 2 hour wait in the waiting room, then 5-10 minutes with the Dr. However i like my surgeon and think he did a great job.
    What are your spinal problems?? Love for you to share. This is a great site. People are so nice and helpful. Thanks.
  • Taking notes is the only way to go. My PM doctor is used to seeing me pull out a piece of paper and always lets me get through everything I have written down. I even share symptoms the same way. Otherwise they'd only get half of them!
  • I feel kinda stupid when i do that, but hey,we're paying for the treatment and need answers. It's not like i can get anybody on the phone or messages returned, they're toooo busy!
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