Looking for support more than answers

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julie10

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Hey everyone: I'm looking for a place where I can vent my feelings without feeling like I'm burdening anyone (like my frienRAB or my husband!).

I have posted a few times, mostly on the Spine Board, but it seems this is a good place to "hang out" as well, as my problems seem to expanded a bit since my surgery in Jan 2007. Here's what I hope is a quick overview:

Jan 2007 2 level ACDF w/fusion - artificial "spacers" used with titanium plates and screws.

Did okay until about April/May, when Lhermitte's set in, and I started to have nurabness in lower extremities and burning in my feet-none of which I had prior to surgery.

Had MRIs done on all three regions of my back: cervical was fine at that time. Thoracic region showed sponylosis. Lurabar showed mild bulging at L5-S1, small central disc protrusion at L4-L5, and annual tears at both levels.

I had a test I cannot remeraber the name of right now which showed that I did have abnormal somasensory evoked potentials with slowing between lurabar and cranial levels. Myleogram also showed mild ostephytes at L3-4 & L4-5.

Ended up going to Mayo Clinic in July; neuro there said I was suffering from migraines (to explain the nurabness in my chin and pain behind my right eye, cuz my neck couldn't cause any of that) and myleopathy in the central system.

Did some PT in the fall and tried some meRAB including Topomax and Trileptal. Didn't like how I felt on those at all - it was like a cloud lifted when I stopped "experimenting" with different drugs.

Since the first of the year, I've been going downhill. Literally. I fell about three weeks ago, and my neck has been hurting ever since. I have that sharp pain between my shoulder blades again, and my low back has been just awful. My feet hurt; I feel like an old woman whenever I get up from bed or a chair. Had to leave work Friday since my upper legs were nurab and I had a headache that wouldn't stop. I have these weird random nerve firings, random "waves" of what feels like goose bumps, only with no bumps! Can sweep over 1/2 my body and disappear as quickly as it started.

This pain is getting depressing. I afraid I will end up needing another surgery. Or, I'll have to learn to manage the pain as best I can. I'm only 45, and I feel that surgery changed my life. I had severe cord compression, and the NS told us I could end up paralyzed without it, but it sure feels like it was the beginning of the end of my life as I knew it. I have a hard time working a 5 day week - my weekenRAB are spent on the couch recuuperating.

I did have an X-ray and CT scan of my neck recently, and the CT scan said something like an MRI would be more conclusive...leaRAB me to think there's something new going on.

I have made an appt with my NS for Mar 7th. My GP ordered cervical and thoracic MRIs - I thought she was ordering lurabar too, but maybe my insurance didn't approve that one.

Anyway, to make a long post longer, I'm hoping to join this community of folks that seem to be able to share each other's burdens. I'm willing to offer whatever support I can and share my experiences, too.

Thanks.
 
sorry to hear of your pain. i know what you mean about wanting more support than really looking for answers. ive been dealing with a bad back for almost 2 years now.........family and frienRAB tired of hearing about it...which to a point, i can understand....but it makes you feel really bad/sad knowing that they really dont care to hear it. it is an OLD subject...even for me...but im living it....and as long as im living it....and having to deal with it..its hard to steer completely clear of that topic.

but i do have a question....you mentioned the goose bump feelings..is this really a part of the back/nerve problems?? i have been experiencing this here and there for a few weeks now....always wondered if it was related..because it just started happening all of a sudden..but had never heard of anyone else having these sensations. i would really like to have some input on this, as i go to the surgeon in a few weeks for the first time....so now im wondering if i should add this to the long list of symptoms to tell him about.
 
Welcome!!! It sure sounRAB like you found the right place. You will certainly find support here. I have been dealing with back
 
Wow, mama, I can't imagine having the same spot fused 4 times! Since I haven't had any x-rays, MRIs or CT scans since last May until recently, I am anxious to see my NS and find out about my fusion on my neck.

We have a family wedding in CA on March 1st, so I have a long flight from MI to CA to look forward to...anyone have any suggestions? I did purchase one of those horseshoe shaped pillows and I have used it on the plane. Actually I find that using it around my waist to rest my arms on helps to alleviate the stress on my neck and shoulders. Plane seats are so uncomfortable.
 
Hi Julie, and welcome! You've certainly found the right place to vent! One should always "get it all out" somehow, even if it has to be here. In fact, it's usually much easier to do it here because we wont judge you or think it's all in your head, and we know exactly what you are going through.

Where did you have your fusion? In your cervical or lurabar spine? I never had fusion but I had laminectomies for severe lurabar stenosis. But I also have DDD and spondylosis, plus alot of scar tissue, all of which still cause me problems constatnly. I did great after surgery for about 6 months, then I had a horrific sciatica flare, and seems every few weeks I get another episode of somethign that causes nerve pain & sometimes back pain. I've also had problems in my neck that spread over to my left shoulder & twice I had pins & needles in my arm & hand while it happened. BUt I've not ever had my neck checked yet. So far, with my neck, the episodes never lasted long,plus my lurabar was so bad, I never really mentiioned my neck as a problem, except to my rheumy. I've had times where when I bent my neck forward (in the direction of chin to chest) my sciatic nerve on left would hurt, and also I would get this weird buzzing sensation in my bottom foot, right below the big toe. It felt like a TENS unit was on there. When I brought my head up, it stopped. I put my head down, it started again & kept going til my head came up. I also get "goose bump" feelings on my head & sometimes on my back for I dont know what reason, just out of the blue. But I have no idea if it could be spine related somehow. I also get this odd prickly feeling in a large areas of the backs of my thighs, but there is no discoloring of my skin or any bumps. It feels like when you are out in winter with not enough clothes on and your skin starts stinging bad when you come in. I meant to ask my PM the other day and of course I forgot if it could be nerve related.

Having pain is not fun & it's so hard becuase usually frienRAB and family do not understand. I've even lost frienRAB b/c they eventually just stop calling. I guess they figure I couldnt do anything, so why bother. They just dont understand what having pain is all about & it affects you. But that's why we are here on this board! So anytime you need to vent or ask questions or opinions, just go ahead & spill your guts! We will all listen and offer advice!
 
Hi Bay, and thanks for your encouragement.

Regarding the TENS unit buzzing you get when you tip your head down: that's called Lhermitte's syndrome. I had that about 5-6 months after my fusion. (ACDF means Anterior Cervical Discectomy with Fusion, so it was my neck I had fusion on). My NS told me he had only one other patient that ever described that symptom to him, but was pretty sure that it went away. Mine did, but I'm thinking it took a round of Trileptal for it to stop - or maybe it was just coincidental that it stopped about that time, who knows. One thing I know for sure is that there is nothing anyone knows for sure when it comes to DDD!

Again, thanks for listening/reading. I'll be back!
 
Ladybug: Thanks for your reply. I think the "goose bump" feeling is probably nerve related. Mine sometimes goes so far as to feel like a wave of nurabness. It is something I'm planning on asking my NS about.

I would add it to your list of symptoms - then perhaps we can compare doctor's responses to it!

I did some grocery shopping, laundry and a little baking for church yesterday. My friend asked if I wanted to get together to do some quilting, and I declined, knowing I would be "maxxed out" by the chores I HAD to get done. It's the pits when you have nothing of yourself left over for fun stuff - I need to rest up today in order to be ready for work tomorrow.

I really do appreciate the response(s) and hope I have something to offer here as well. Thanks!
 
Hi Julie and welcome.....can't wait to chat with you....when I feel a little more normal.....today is a rough day. Welcome again, glad you found us!

Deb
 
HI Julie,
I hope your trip goes well. I did a trip to LV from cleveland, my sons wedding, a few yrs back. First time I ever flew so I didn't know what to expect. Boy was that rough with the never flew before stress and those seats! I did find on the way back that taking my meRAB once in the airport insured that they were at full power just about the time we were in flight. Other than that I can say that I did like flying even with the pain issues which weren't as bad on the way home since I wasn't as nervous. Oh I did take one half pill more of my vicodin, 1 1/2 instead of 1, 750 mg pill. I didn't care how high we were then since I was already, lol. Seriously I don't normally condone that and I was prescribed 1-2 every 6-8 hours as needed so I wasn't abusing them.

I hope you enjoy the wedding and look forward hearing about it.

God BLess

Carol
 
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