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Wish I knew more multiple cervical degenerators like me

Nov 21, 2008 - 19 comments





cervical DDD


cervical surgery


cervical degeneration

So for several years now I have researched, radiographed and been an all around active patient.  However, I get very frustrated that when I put into different search engines "multiple cervical degenerative disc disease" or some variation of that, I get nothing on multiple levels of degeneration.  It seems to be somewhat rare to find people with four levels of degeneration and that's a good thing. Lord knows I wish I didn't have them.  But I do wish there was more information out there for those of us that do.  It can be very difficult to know when what you are feeling is normal for your condition when you don't know anyone else that has it.  I'm not certain if anyone reads my blogs but if they do and they have a similar case PLEASE let me know.  I am happy to share the wisdom, info and random facts that I have learned in dealing with my multiple level cervical DDD.  I hope someone can return the favor.  Or just let me know I'm not alone.  :)
Data can be hard to find on my particular condition and clinical trials usually look for no more than one level of degeneration.  I'd also love to know if someone has seen something I have missed.  A treatment opportunity that I have not explored.
But even if no one reads this or has this or cares (lol) I feel better having gotten it off my chest.

Step 2

Jul 07, 2008 - 1 comments

So, now I have to have a CT Myelogram.  More money spent to see exactly how bad my neck is.  Really!?  Arg.  My doc is great, the go-to guy for spinal surgery in the region and he basically said there is no treatment for me.  A four level fusion would leave me stiff and with severely limited range of motion.  He said if I can handle the pain then I should.  Nice, huh?  The only place they are doing the kind of suregery I need is in Europe, primarily Germany.  I found out the cost today for a 4 level disc replacements surgery over there.  35-50k Euro.  Yeah right!  Like I am paying that.

But my doc is sending me for this CT Myelogram as he is hoping the MRi gave an incomplete or incompetent picture of what is going on in my neck.  I hope to god it shows that things aren't as bad as they seem or as they feel.  

Discouraged again.  I wish American medicine could catch up to meet the needs of the people.  

Spinal Rant

Jul 02, 2008 - 2 comments

cervical spine




degenerative disc disease

So tomorrow I go for my 1st visit w/ a surgical Ortho doc in the same practice as my Pain Management doc.  This is as close as I have come to accepting that I may need surgery.  I am TERRIFIED!  I don't want surgery.  I want the doc to tell me that with my conservative methods I can reverse or at least stall the progress of the disease.  I want him to look at me and say "Heck no, go have kids and live your life, you are doing a great job and it will all be fine.  You are too young for surgery."

My family is soooooo not helpful.  Well, at least one of my aunts is being great.  But 2 others have shown their concern by telling me I should stop "courting" surgery and inquiring as to how this is affecting my work.  Well yeah it is affecting my work but is that really the issue or is it the fact the I have 4 levels of degeneration in my cervical spine and I herniate disc's like they're going out of style and I have only just turned 30?  Not to mention I just told you that my program that I began, got up and running and maintain to support Hispanic patients in our community was listed as one of the hospital's accomplishments and that my VP is thrilled.  And you say that's nice but is your neck affecting your work?  Bite me!

Anyway, I am counting the hours til my appt with the doc.  I am having a hard time focusing on other things as I am just so apprehensive.  There just aren't a lot of options for a girl with a busted neck.  Fusion will limit my range of motion so much and the FDA has only approved disc replacements for single level use.  So will I be able to mix them?  Can you give me one disc replacement and fuse the rest?  All of these questions are just swirling around in my mind.

My boyfriend is so over talking about it too so when I saw this journal tool, I thought, A HA! I can rant and rave and get it all out and go home and act like a sane person who is not obssessing over things that I have no control over.  :)
Oh well, I will just have to wait til tomorrow.