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Went to Neurosurgeon, I'm in shock

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:24 AM in New Member Introductions
I wasn't sure what to expect when I headed up north to see the Neurosurgeon. I had so many questions...restrictions?, ssi disability?, prognosis?, just to name a few. With the MRI's and symptoms I knew that I was going to get some tough answers, but at least I would have answers.

My answers were...the same thing as last time, except for leaving my child at home. (See my earlier post for those details...new girl with a lot of questions).

They said I do need a double fusion in my lumbar area, they don't do anything for the thoracic area unless paralysis is an issue, and my neck is not that bad, and I need surgery to lose weight. I was stunned. I asked why I am having the bowel and bladder problems, the numbness in my saddle area, the pain, weakness, burning, numbness and tingling throughout different areas of my body and they said that maybe I need to see a neurologist for possible nerve disease but it has nothing to do with my back or spine. HUH?
I was in tears when I left. EVERYTHING that I have been reading and studying on all of this says it is a serious problem with the spine. I asked about the hemangiomas and they said that they don't worry about those at all. I am beside myself. I feel like I am a basketball that is getting bounced around from one person to the next with no purpose other than getting slam dunked.

Now I have to wait until Nov. 21st to see a neurologist, meanwhile symptoms are increasing, pain meds aren't working, and I am getting so tired. It just makes you want to give up, give in and say oh well, if they aren't concerned then why bother. I guess I probably have no need to bug anyone here anymore since the docs say my back is just fine other than the lumbar. I thought that neural foramina narrowing and disc bulging, protrusion throughout the spine, fractures, etc. were serious. Shows I don't know much of anything, except that my "8-10" pain level is no big deal. Thanks for listening to me. I will check for posts and then step out of the picture. God Bless all and I hope that everyone here gets better, feels better and lives a carefree life. Thank you Tonya


  • welcome to spine-health...
  • You said other than the lumber? The lumber can cause numbness and weakness and tingling and pain. I hope you can get some meds to help until you see the neurologist. 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
  • help me". But please don't leave this forum as it is comforting and you are as welcome as anyone else in pain. Try to keep your chin up and look forward to seeing the neurologist. He or she maybe just what you need.

    I wonder why you would be told not to worry about hemangiomas?

    When will a fusion be scheduled? Can your lumbar issues be taken care of in the near future? It maybe a start to help some of your pain even if it isn't the answer to all of it.
  • They told me that I would have to lose weight before they will do any kind of surgery. I am suppose to lose at least 85lbs. I was told to get lapband surgery. Just what I need, more incisions on top of old incisions before more incisions. I am looking at, at least a year before they will do anything for lumbar spine. They told me that hemangiomas are no big deal, so I don't know. Frustrating. Thank you all for your words of care and concern. I am going to continue doing research on peripheral neuropathies, etc. see what I can find. Talk soon, Tonya
  • Hello and welcome to spine health. Hang in there baby, you are not alone! Please don't quite coming, unless you find that you are worse off being here. I wanted to let you know that I also have a hemangioma at L3 in the vertebral body. It was very concerning to me when I heard about it, so I did some research on it. Hemangiomas are 1) Usually benign--so if that is what the doc is saying, it is probably the case for you too. 1 out of 10 people have them and don't realize it. 2) They usually figure out people have them after they die upon autopsy. Much more often then not, they are asymptomatic. I cannot assure you of your case because I am not a doc nor can I see your MRI. But from my research and my own experience, they don't do anything but sit there and look ugly on MRI and scare us to hear we have them. 3) Listen to your body. If you sense something is amiss, don't hesitate to get another doc to take a look at your x-rays, MRI and certainly examine you. I have been to three "experts," who all have something different to say about what to do. But, I learn more each time I see a NS or OS. I feel I can make educated decisions now. Do your homework--research.
    You said, "I asked why I am having the bowel and bladder problems, the numbness in my saddle area, the pain, weakness, burning, numbness and tingling throughout different areas of my body and they said that maybe I need to see a neurologist for possible nerve disease but it has nothing to do with my back or spine. HUH?" These are very serious problemos Tonya. All of the docs that I have seen don't consider the bladder problems and numbness in the saddle area minor. In my opinion, you need to stomp your feet until you can be seen by a NS or an OS pronto! These docs are in high demand and are very busy, but you sound like a PRIORITY patient. Call them, tell them your symptoms, and keep trying until you are seen ASAP. Perhaps they will disagree, but perhaps not. Keep us updated and good luck. >:D<
  • I'm bummed that you had such a bad experience after we all had such high hopes for the appointment. Never never give up if you know inside yourself that something just isn't right. I am a firm believer in being my own advocate. I usually try it their way until I see they are really doing nothing and then I step in and start making some inquiries.

    Regardless of what you do, I would if I were in your shoes, keep the appointment with the neurologist. I have great success with having a neurologist handling my case and making referrals where necessary.

    Hang in there girl!

  • I agree. Do not be bummed about seeing the neurologist. They understand alot more about nerve issues and pain. He may be just what you need. Good luck and please keep us posted.
  • Hang in there. Things can turn around. We people just don't know when. I thought I was at a stand still and then started to feel better.

    I pray the neurologist appointment goes well.
  • hello, dont get discouraged, i been to so many doctors and they said the same thing to me 5 years ago. keep finding the right answers. get more opinions. my mother inlaw had numbness like you descrive and had to get emergency spine surgery for a ruptured disc in her lower back. i have numbness and weakness etc. and sometimes they just dont have the answer. i know it makes me so mad too. im going to another new orthopedic monday,thedn to a nuerologist in december. this forum seems great im new here too and you have pain and many symptoms people on this forum have. so why would you even think you dont belong here? this is the only place people really understand our pain even more than most doctors. cheer up honey.

    sincerely dawn
  • I agree with everyone, please stay in touch and ask questions till it hurts. You would not believe how many questions i ask the doctors and this forum until i had a good idea about what was happening to me and what may happen in the future.

    Alot of us here are glad to help by telling you about what happened to us and maybe you could learn from that.

    The doctors and this forum helped me more than i can say, i am so grateful! =D>

    Evelyn :H
    Had PLIF in 2008 and a Laminectomy. One level fusion, L4-L5.
  • Are you on pain meds? Lyrica? or Neurotonin? Have you seen a pain management Doctor? you can find one on your own and your Dr. will fax referral. I've taken a couple of trips to the ER and got some percs when my Dr. was away. It's hell without enough pain meds. Have you tried heating pad for your back too? 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 have been posting in the chronic pain forum and will continue to do so now, it seems more logical since they keep telling me that it is not back related. The neurologist (got in early) ordered a needle EMG :''( as well as a brain MRI w/ & w/o contrast and blood work. The EMG was definately not fun but I tolerated even as terrified of needles as I am because I knew it was important. :SS The nerve conduction test was no picnic either. They showed bilateral carpal tunnel syndrome. The brain EMG did not show any signs of a stroke or anything else wrong :/ I am still waiting on the blood work. I know she spent a lot of time checking my eyes and rechecking them and asked if I had seen an eye doctor lately. I still don't have a clue what is happening.

    The only thing that I have been taking for the pain is 7.5 lortabs. I also had to sign a legal contract in order to get my last prescription filled. I am not allowed to get pain meds from any other doctor, go to any other pharmacy or cancel any of my appts and no matter what I cannot have them filled early. I told her that I was having to take more and that my husband keeps track of what I take, why, when etc. and that I have had to start taking them every 4 hours instead of every 6 hours, which I was told my the ortho doc that what I was taking was a joke, and he would be laughed at all the way to the pharmacy if he wrote that prescription for someone else who had the problems I did. That is when she made me sign a contract and I am only allowed to take 1 every 6 hours no matter what. ~X( I don't think she is paying attention to anything other than the fact I have been on pain meds, and that since I had some stolen that I am a pill seeker now. X(
  • I went to my Doctor and told her almost in tears that the pain meds only last 4 hours and I still have pain and it's unbearable. She increased my long lasting med to 4x day. I was taking it twice a day. Tell her it only works for 2 hours and you're still having pain. I can't believe how much we suffer in pain and Doctors don't hear. 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
  • hello tawny- It seems like there is some serious problem as they recommended a double lumbar fusion. Perhaps ask if this fusion would help with some of your symptoms or why they are suggesting a fusion and what will it help with. Or why it would be necessary and how soon it should be done..I would ask if it would help decrease the severe pain levels..take care....jade

  • It sounds to me that your neurologist may be trying to rule out MS. I zeroed in on that because he kept checking you eyes. I was screened for that too and went thru nerve conduction studies. Nothing was found because they stopped at L1. If they had looked further, it would have shown maybe DDD causing the strange feelings I had. I was dumped to my PCP and felt really let down. Then later on my back problems became very clear.
    This is going to be a tough battle for you, and we will be rooting for you. Keep working with your doctor, and hopefully after a while she'll see that you need an increase with the hydrocodone. Do you know who stole your meds?
  • Hey Tonya - I had weight loss surgery (RNY Gastric Bypass) last year and have lost 80 pounds. I had it after my back injury and I have to say it did help, but eventually, my crumbling back got worse anyway. I have been told by every doc I've seen that it's a good thing I lost the weight. It's supposed to help.

    I noticed the despair in your message and I don't blame you for feeling hopeless. However, there are things they can do for you, so do your best to follow along. Things will get better. When my back issues escalated to their worst, I was told by every doctor in town there was nothing that could be done for me, short of a spinal cord stimulator. Talk about despair!! I did eventually find a doctor who listened to me, did enough tests to realize that I needed to have my spine stabilized, and I am on my way to surgery this week. Not really looking forward to surgery, but looking forward to the eventual relief from pain.

    Welcome to spine-health and some good support. Do NOT give up!


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • Linda, thank you so much for your words of encouragement, it means a lot. >:D< I wish you the best of luck and hope that you have an excellent and easy recovery and hope that it makes all the difference in the world to you. One day at a time, and even sometimes one minute at a time right? Let us know how you are doing when you are able to. Again THANK YOU, Tonya
  • They only did the nerve conduction test on my legs and arms. They did some of my lumbar when they did the EMG only to check my hips. I finally went and picked up my blood work because I got tired of waiting because they still haven't called me to go over anything. I have a lot of highs and lows on my blood tests, so it is confusing. Of course my thyroid being the worst as usual. I don't think that they will ever get it regulated, especially after having surgery to remove part of it. God must really want me to be strong because of all of the things I have had to go through. In no way do I blame him for what is going on at all. Hopefully someone will call me today. Even though I have a lot I personally am dealing with, I will have to put some of it aside because my children are having some serious health problems right now. It never ends. Will let you know if I hear from neuro today. Oh, by the way I have a couple of ideas on who might have taken the pain pills but don't have an ounce of proof. I have bought a lock box that requires a code and a key. That has made a big difference.
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