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finally some news!

tammycttammyc Posts: 894
edited 06/11/2012 - 8:45 AM in Neck Pain: Cervical
I finally saw my neurologist on friday.Whoever said that "the more you know the better", was definitely wrong. First of all she's doing another mri on my thoracic and lumbar spine. She did have a report for my lumbar but said that it didn't give her enough information and she wanted it done somewhere else. They did a nerve test on my legs first thing when i got there to see if i have nerve damage. The lady that did it told me that the signals went way down on my left leg.I could tell that.There was a real difference in feeling when she performed the test.When i saw my neurologist she didn't mention the nerve test she just said that she needed to find out why my legs were numb.I also have numbness off and on in my hands so they did a nerve test to find out if i have carpel tunnel and to see if my ulnar nerve is trapped but they both came back fine so there saying that its coming from my neck. Spinal cord damage. I knew that there was some damage to my spinal cord but i didn't know how much. She told me that all my reflexes have reversed.Also I have hypersensitivity to pain and she said that because of the car accident i am going through a pain syndrome which is very painful and very hard to treat.She's putting me on a higher dose of nerve pain meds. and said that if it didn't help there were a few more that she could try that might help.I also have had a bladder frequency problem since the car accident so she gave me a medication to take before bed time so that i can get some sleep. I started it sunday night and actually got some sleep. Whoohoo!!! She said if it helps then she would put me on another one that is longer lasting. She told me to be prepared for the fact that i might have to take nerve pain meds. for the rest of my life. Now i'm just waiting for the mri dates.They said not until the end of september at the earliest. Alot of bad news,but i really didn't think she was going to tell me that i was great!! ;) She told me that i need to start listening to my body and when my muscles start to get tired i need to stop what i'm doing because if i don't then the pain will just get worse and i will get symptoms returning.


  • Sorry you have to have more tests done. It's nice they are painless but at the same time it's still a bother. How are you doing on the nerve meds? I was on Gabapentin and stopped taking it. Unfortunately it wasn't doing anything but making my head feel cloudy. Hope it works for you!! Your doc gave you good advice about listening to your body. Sometimes that is a difficult thing to do, I struggle with that all the time. Take care!!!
  • It's good you finally have some answers it's always the not knowing which makes it worse because they don't know what treatment to do for you. I hope the nerve meds help and they find out more with more tests. Great to hear you're getting some sleep that's so important to get sleep to feel somewhat better. I wouldn't know how I would sleep without a mild sleeping pill even if I do feel a little sleepy throughout the day I need my sleep time. Thanks for the update. Take care and pray you get some more relief. 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
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  • Yes at least now i know whats happening with some things,and i'm sure the next set of mri's will show the rest. its nice to actually get some real sleep for once. This three and fours hours a night is crazy,i can't believe i've been doing it for almost two years now. I was so happy the first night that i got seven hours in a row without having to get up and go pee every hour.
  • The last few days i think everything that the neurologist had to say to me is finally sinking in and now i'm feeling very depressed about the whole situation. Yes its nice to finally know whats happening with my body but now i have to try and adapt everything that i'm doing so that i don't overdo it and thats very difficult. My functioning is at a very low level right now and to ask me not to stress myself makes everything even harder. Especially since i'm the type of person who needs everything done and wants to do it all myself.
  • Depression is something that unfortunely is kind of natural when you facter in all of the BS you have been through. I feel for you Tammy. I have been considering getting on anti depressants but am afraid of the weight gain associated (Lord knows I don't need any more help in that department).

    I started taking Topomax for my headaches and nerve pain. I have suffered through the weird side effects and it works great for me. I am on 100 mg daily now. I started at 25 mg and worked up to 100 over 2 months. This is month 3.

    My NS is sending me back for up to 2 more ESI's and 2 months of MT and PT says my back looks good and I just have delayed healing from the car accident.... Great! What does that mean? I get to see him again in 3 months. They will keep filling my pain meds but maybe I will just starty seeing the pain doctor. Don't really knnow what to do.

    Definately have to see the lawer now. Since my insurance wants the auto insurance to pay for my medical and the auto insurance co thinks they need access to all of my medical records.... More BS than I need to worry about.

    Hang in there Tammy, Hugs!

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  • i was doing therapy after my surgery when i had my accident Julie and the insurance com. paid for my therapy for a year after the accident but they needed all my medical records and even asked for them preceding my surgery.After a year they decided to cancel my therapy and send me for assessment and then said that i should be able to work at my own speed ,that i didn't need anymore therapy because i was as good as i was going to get,but when i was in the assessment every one of the accessors told me that i had major problems and had a lot to work on.But they worked for the insurance co. so they weren't going to help me out.My lawyer is meeting with the insurance co. next week to try and come up with a number to settle my case,i don't want to take it to court.I just want it settled and over with.Good luck to you with the whole insurance thing its a royal pain in the butt!!!!
  • I saw my naturopath today and she did some injections in my neck and shoulder area for the pain and spasms.Its along the lines of trigger point injections but of course it has natural properties in the needles. My upper back and arm feel like there on fire tonight and the pain is very uncomfortable,but she did warn me that i may have that kind of reaction for the first 48hours after the injections. I'm really hoping this is going to work for me,and if not i really have nothing to lose at this point. She's going to be doing multiple injections over the next six weeks.
  • Hi Rwill, your surgeries started 3 yrs before mine. I'm 35 now & have had over 26, some non evasive (wich is funny because they are evasive to me) and numerous evasive surgiers. I had spinal fusion l4,5 & S1 but with a pelvic bone graft , very painful & it didn't work. Now they say I have FBSS (failed back surgery syndrome) I had the SCS implant ,external worked great but the implant didn't give me the same relief. Then my leads moved from T8 to T3 & emergency surgery had to be done so the leads were anchored with wires & numerous screws.Where are they implanting the battery (paddle) Mine is in right above what's left of my butt by what's left of my pelvis. This is very painful, doctor said nerves that he cut through were growing back & were going to be very painful. I don't mean to discourage you as I have heard some wonderful responses about SCS. You'll be in my prayers and I really do hope it works for you. You are way to young for this. Which company are you going thru to get the scs? boston scientific, Medronics or advanced neuromodulation systems?
  • Hey Tammy, sorry you're going through so much right now, hopefully the new shots will give you some relief!

    As much as it can irk you to be told to be careful and pace things... sometimes it's best. Get the things you need done and still have enough left over to do some of the stuff you want to do. I always find it easier to kind of chart things out on the pc (or paper if that's all that's available). It could be silly, but it makes me feel like I'm doing the best I can And I'm getting what I need to do, done... maybe not as fast as I used to, but done none the less.

    Set yourself up with a pad and pen and give it a try... think about what you need to do... think about what can be done and in what order, are there things you can do while waiting on something else? It can be a downer... but it depends on how you look at it... sure you can't do it all like before, but you're actively participating in a plan that allows you to get it done in a way that won't hurt you and hopefully won't tire you out.

    Take care and let us know if the shots work and maybe what they are?
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