Jump to content

Saw the neurologist finally


MightyMouse
 Share

Recommended Posts

Here's the scoop: I have herniations at c4-5, c6-7, c7-T1. My reflexes are all out of whack (again), and I have significant left sided weakness. As I expected, i'll be onward to PT and also to pain management to decide about cervical epidurals. We both agreed, I'm not a candidate for surgery.

Also, I have to go back to him for an EMG after the holidays--mostly because he's concerned that there seems to be the changes in symptoms (pain, weakness, etc.). We'll see.

On a good note, he actually knows enough about my autonomic issues to ask me today if I was taking proamatine. :) Made me smile cause I know he has to have done some reading. He's a good guy.

Nina

Link to comment
Share on other sites

nina...

here are my 'brief' words...

GOOD GRIEF!

and no wonder you feel burned out...plus, comps will really take it out of you! that is A HUGE ACCOMPLISHMENT though! you go girl!

question (that DOES NOT require an answer if you don't have steam...) why is surgery not an option this time? just wondering how they make that call?

let's just say, i'm terrified of the neurosurgeon possibility and am doing everything i can to avoid it!

emily

Link to comment
Share on other sites

Nina, glad you got some answers. I don't know but it sounds to me like no surgery is a good thing. I hope that PT and pain management can give you some relief. I know that you have been down that path before. Isn't the EMG where they stick the needles in you and twist them as they use an small electric current?? I hate that test! I know you have had it before but it just isn't any fun. Well, at least it is after your getaway.

Link to comment
Share on other sites

Awe, you guys made me cry tonight. When I'm running on fumes, you all have the little gas can that I need to keep going.

Em, because of the healing problems that come with my joint hypermobility issues, surgery is a bad idea. I seem to heal okay for soft tissue, but bone is a different thing altogether. So, it makes me a very high risk patient for failure of a graft, and would likely mean that many levels would need fusion combined with hardware... and no guarantee that other levels wouldn't herniate later. Better to try to stabilize things via my musculature than via surgery.

And yes, an EMG is a barbaric procedure where the stick needles directly in the nerves and run electric current through it. You'd think there'd be a more humane and modern method of measuring nerve function. The only good thing about all my nerve damage is that the EMG doesn't hurt as much as it would for the average bear :) Still hurts though.

Next stop Cancun. I leave in 6 days and 9 hours! yes, I'm counting :) Nina

Link to comment
Share on other sites

Nina,

Unfortunately, I don't understand exactly what you're saying medically. Whether it's because of my lack of english or medical terminology, I'm not sure. However, I very much hope that you're not in too much pain and that the test goes well. I'm crossing my fingers for you that the physical therapy and pain management are succesful and you soon begin to feel as healthy as you possibly can. It sounds like you have a wonderful doctor, so I'm confident that you're in the very best of hands to help you with this. Keep us updated, and if I don't have the chance to say it again before you leave, have an absolutely AMAZING holiday. (Ok, I'm still a little jealous :) )

B'Ahavah,

Ayelet

Link to comment
Share on other sites

Thanks again everyone.

Ayelet, sometimes I type in lots of acronyms--and should probably be better about typing things out in full. I get accostomed to speaking "medical-speak" at home because Teri (my partner in crime ;)) is in the medical field and it's just a habit to use the shortest words or symbols. So here's a better explanation:

My back has been causing me a great deal of pain, numbness and weakness. Between each bone in the spine, there are discs that serve to cushion forces when we move, walk, etc. The cervical spine is the top portion, going from the base of your skull to below your neck. The thoracic spine is the middle section, and the lumbar spine is your lower portion.

Most of my cervical and thoracic discs are damaged, and because of the damage, are putting pressure on the nerves that surround them. I previously had surgery to remove one of the damaged discs (cervical disc between bones 5 and 6), and they put in a piece of bone that was from a donor (person who died and donated). That first piece of bone broke several months later and I had emergency surgery to put in another piece of bone, this time from my hip.

So, currently the discs that are herniated (bulging) are above the fusion at cervical space 4-5, and below at cervical space 6-7 and the space where the cervical spine ends and the thoracic spine starts is at C7 and T1.

I also have Ehlers Danlos type III, which is a collagen disorder (collagen is what makes tissues stretchy). Mine is TOO stretchy, allowing my joints to move too much. So, I'm prone to dislocations, sprains, etc. It's probably the reason that my spine is so unstable.

Sorry for speaking in code! :) and thanks for the nice wishes too. Nina

Link to comment
Share on other sites

you know, i think that we could start a whole club/subset of us now who are in PT for neck junk! aaaahhhh...one more thing to whine about collectively! :)

guess what? off to eat some dinner (bet you all missed that line while i was gone huh?) :) maybe you thought i had just sat myself down for a few days and tried to fill up my bottomless pit? that i was so busy eating i couldn't stop by for a visit here? :)

okay, okay, off topic...

emily

Link to comment
Share on other sites

Guest tearose

Nina, it's time you ask the doctor for a "neck" coupon book, buy six visits get one free.

Sorry you have to deal with this, keep us up to date.

Focus on packing your suitcase. best wishes, tearose

Link to comment
Share on other sites

There is something I wanted to share for my fellow hypermobile members or those with Ehlers Danlos III.

Teri was talking to one of the orthpedic surgeon's at her hospital about my spinal predicament. She told him about how my first graft failed, and 2nd graft was needed. Then she told him about how I found out I had EDS III aftwerward--at that point he said "OH no, she shouldn't have had a fusion... she's probably in the midst of a disaster now."

I think Teri was a little surprised, but then he went on to say that a person with EDS who has a fusion will then typically have a chain reaction of herniations because the joints are too loose to handle all the day to day stresses.He also said that I would be likely to not have problems much below T1 because the ribs help to absorb some of the stress and spread it out a bit more.

Live and learn I suppose. But I did want to share it with all of you so you wont have to learn the same lesson the hard way.

Nina :)

Link to comment
Share on other sites

Emily, I really don't know. Teri and I have talked about that issue. Hindsight is 20/20, ya know? Yes, I think the medical diagnostic process definitely failed me, but it's not a single person's fault, in my opinion.

Nina

Link to comment
Share on other sites

You know what? I'm going to post the eds info in a separate item--it's buried within many posts here and I just don't want it to get lost in the mix.

Nina

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...