Jacquie, :wave:
Wow, you've certainly been through a lot lately.
Looks like you've been doing all the things you can to get to the route of your problem(s) and still not finding your way out of the maze. Are you occassionally using ice (like laying back on a bag of frozen peas)(over your shirt for about 15 min at a time) on disc areas you feel are inflammed? Are you on Vioxx or an anti-inflammatory? Just brainstorming here- but throwing a few things out in case they may be of help ~
Again- I don't know if this is medically factual - but I've read (I believe on the Spinal Cord Disorders board of this board) - that with Cervical disc leaks - some leakage can get into the spinal canal & cause dizziness.
A few questions if you could answer:
What specific test did they do to rule out your cervical problems as a source of your dizziness?
Did an MRI reveal annular disc tear in the lurabar or did that 2nd neuro just assume? How did he determine it was the L5 - and not S1, or Sacroillioc disorder? (You may want to do a search on SI on this board- some SI'ers had SI manipulation & found relief - not much fun to have done - but helped some)
How did your problems start? Did they ever dx scoliosis or DDD?
On your disability case problems (sorry!) - do you have a case worker or lawyer who's working JUST for YOU on this? You may get some tips on disability info by doing a search on this board on 'disability'. OR - start a new thread with that in the 'subject matter'. Just brainstorming again - but - I don't know if it's best to discuss with your primary doc about your disability carrier problem & the other doc's disability dx - or not go into detail with him about that- but regardless-perhaps at least schedule a new visit w/Prim Doc for your situation on dizziness & have him write a new letter showing current dizziness dx & write a letter for your case worker showing 'recurring dizziness &/or unpredictable ongoing likely return of symptoms' (or whatever he feels appropriate) - then turn into your case worker with the other 3 docs letters who stated you're currently disabled?
Also- will the disability insurance (or your own insur) help pay for out of state medical care?
After all you've been thru to this point with testing, etc. - if it were me - I'd be very tempted to go to the best now. Mayo? That way you'd know you gave it your very best shot ~ not much more any of us can do than that? And you deserve that. They have a web site- & that may be a good place to start- to determine who to first talk to there - or contact by email via website - or however you prefer. Hopefully that person wld then be given a brief & consise history from you - as to 3 different neuro dx's, your symptoms, & the fact you physically AND emotionally need to get to the exact SOURCE(s) (may be a corabination of probs) & then HELP for your constant discomfort & lack of quality of life. Somehow we have to make all people who can potentially be the 'door keeper' to the door of relief - feel enough empathy to really HELP - w/o us being mistaken for self pitying & over dramatic. I don't know how anyone cld mistake what you've endured tho, as an over dramatic reaction -but so many docs in these times just pat us on the back & go on to the next waiting patient- if it appears we are coping - but also if it appears we're overreacting (delicate balance I guess) Some seem to need to feel empathy with our pain as a motiviation to help. (My experience anyway - & some don't HAVE an empathy gene evidentally!) Back to Mayo- also explaining that you'll be traveling out of state & so will need much coordination for your planned visit. With a pleasant repretoir with this person - hopefully then, this person wld be able to best direct you in (a)which doctor to see - based on his experience & hopefully empathetic qualities. *or* (b) WHO to write there to coordinate this. It wld be ideal (since you'd be traveling out of state) - to be admitted (esp. since you evidentally need your BP montitored during any additional tests) - & stay a few days. Also ideally, prior to your hospital stay, the appropriate personnell would have ALREADY viewed your MRI's & other pertinent tests - along with your brief/concise letter/summary in outline form perhaps - showing your medical/pain/doc visits/tests/dx's by the 3 neuro's/prognosis history AND a few stmts on how this if effecting your quality of life & that you need help and direction as to what to do now. That you can't continue spending time, pain, money & possibility of wrong course of action on your body -unless you know it's on the correct dx & prognosis (espec. in light of the fact you've just gotten 3 conflicting ones)- and THAT'S why you're going to them - the best.
Lastly, if I may ask, are you on an anti-depressant?
a) Chronic long lasting pain is KNOWN to cause depression. There are so many anti-depressants nowdays that can really help lift one's spirits. If you're not on them - you may want to speak to your Pri care doc or gyn or whichever doc you feel most confident with (expertise-wise) about which one they'd suggest for you.
b) Emotional pain: worry, pain & stress is KNOWN to make your physical pain worse. A vicious cycle occurs -pain, then worry & stress - then more pain etc etc etc. I hope you are pampering yourself with whatever lifts your spirits thru this tough time. SounRAB like your husband is supportive & empathetic - which is a great help. Sometimes it's hard for our spouse's to understand if they haven't felt the pain. Comedies, happy old movies, favorite music, reading, watching nature - anything that brings peace of mind. Yes- you'd like to feel more productive and work - but we have to know our CURRENT limits - but do everything we can to get back our lives - which is obviously what you've been trying to do -
Even if our future doesn't hold running marathons- there is a more pain free - & happier life ahead - and then we can make our adjustments & find the high road. We CAN deal with whatever hand we're dealt - IF we know we've done all we can to improve that hand. It's so much easier, as you know, to appreciate even the smallest things of beauty & worth in life- when you aren't distracted with constant pain. So, you deserve this time to get better - and not feel badly about things you have NO control over.
Jacquie, best of luck to you - hang on sweetie!
Laura
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Mar 2003:Micro-Discectomy w/Hemilaminectomy L5-S1
Prior to that 4 mos of Sciatic pain; left side
Herniated Disc L5/S1
Bulging Disc L4/L5
08/20/03: At 5 mos post-op: Requested PT - (had to convince doc)Now completed 6 wks PT. Results: Back & abdominal strength MUCH better - to prevent future back injury. Stretching exercises help temporarily but next morning - incision area seems just as tight, same tugging feeling when leaning forward of pressure, restriction through-out post op. Concerned this is scar tissue adhering. Looking for appropriate Doctor to help me confirm this & appropriate treatment for it - if treatment's available. Continuing exercises @ home.
[This message has been edited by TexMich (edited 10-22-2003).]