Brain Stem...

[Emme80]

I'm curious...Iforgot to ask this earlier in my postings, but I think my "big squishy/big brick issue kind of took over my "questions". :/
is it something that just goes along with the territory with Chiari, whereas all kinds of things are being compressed, is it also so common for the brain stem to be "pinched"?
My mom told me that the only two things my NS said when he spoke w/her after surgery is that (besides that it went very well), was that he had to take off more than he'd have liked or wished from my C1 (C1laminectomy) and he said "her brain stem was being pinched pretty good"...
Is that just par the course with most all decompression surgeries? That the brain stem too is ... being affected too (being pinched pretty good, which I'm guessing means pretty hard)?
Anyone else told that? Just curious... as I forgot, amidst my main issue  at hand (I can fit IN my hand) -the squishy mound turned brick.

[selmaS]

  You have no reason to apologize....this is not easy to deal with and it is very scary....so I am sure we ALL understand how frustrated you are at the lack of concern for your big squishy/brick that is causing you pain....

If you do not post you will bottle things inside making you feel even worse.....keep posting and rant, vent or what ever you feel you need to do.It is one way to deal with it and is healthier then holding it all inside.....

[Emme80]

I'm sorry guys for being such a total weak baby. I'll push through eventually. Just hope to dear god sooner than later. It's taken everything out of me now. It must come to an end eventually...it has to. I don't know what to do between the muscle spasms , except heat & constant heavy brick pain. No flexeril. All I can do is cry. Thus, a total baby&it appears that's what my Dr. feels. But I'm sorry to post my frantic dismal scared painful lost & confused woes here. It's got to end. Period.

[Emme80]

Indeed, glad no infection. I still can't get over what sitting in that chair for 9 hrs. did to me&all my muscles. On a good day- w/o having had this operation somewhat recently, it would've hurt. Ugh. Yes, I told the ER about the pain. I went b/c when I called my NS about the heavy persisting pain, he couldn't fit me in...he said if it was that bad go to ER. I duked it out over the weekend. Still no availability to get in w/ Dr. as of yesterday (until my f/u appt.)so we decided yesterday we'd go to ER today. And...yea, I don't know...I mean I was in a room w/a girl who had a 10/10 migraine but was on the phone w/friends, while I'm crying in same room likely underrating my pain at I said a 6-7/10. She was tended to quite quickly. I was high blood pressure, high pulse, a fever at just below a fever and it seemed like -all normal. It can happen. It'll hurt yes. (He said head "wounds" can hurt badly b/c it's so vascular). But the end was abrupt. While there-given a flexeril, 1 hydrocodone & sent on my way with "your neurosurgeon said if you had any problems, call him"....but I did... he sent me to ER. So, I'm flummoxed, soooo achey & still with this painful big brick. Taking 2 Vicodin a day is what the last of my script is. I'm trying to make this all manageable. Get through it & be able to see the benefits of the surgery. I'm SO happy that my numbness is gone&tinnitus gone, but I'm excited to move along...but trapped by this brick and a constant heavy pain there. Feeling quite....dropped.
Sorry to be such a bummer gal right now. The chair really did me in as well. Now I feel like a complainer.

[selmaS]

  Oh my...hmmm.....well no infection is a good thing to know for sure....did you tell the ER about the pain...would think they would give you something.

I really hope another member that has had this issue will find time to post some insights .....hang in there <3

[Emme80]

Spent 9 hrs (in a plastic chair that killed me, for which I am already hurting from. I've never just sat in such a horrible chair at an ER-especially when I can't place the back of my head anywhere...) at ER today, as directed by my Neurosurgeon ...blood work shows no infection. Good. CT shows same CSF build-up, they said its normal& it will eventually absorb. Was given 1 flexeril and 1 hydrocodone. They contacted my Neurosurgeon who said this is par the course& to call him if I've any problems. But I left with only 1 problem helped-knowing it's not infection. I still don't know how to escape the pain to a manageable level. I don't know if I'm supposed to ice or hear this thing. ER doctor said to call my Neurosurgeon, who said to go to the ER. Feel stuck and confused and in far worse shape than I did when I went there. Crying won't help but it's all I can do right now.

[KerriC1]

I hope you find some answers and get some relief

[Emme80]

That was one of the things we (NS and I)....about what happened w/the mesh-he said for said for more than a few reasons, he was going to harvest my own tissue for dura patch.
Btw- I'm headed to the ER in the morning to deal w/this hard brick mound. I've told my Dr. enough & he seems to schluff it off.It's hurting like he** and today I've consistently run a fever at and just above a 100°... While yes, it's not over 101°, it's ...I've had enough. It's literally a pain...I need to know what it is, if it's still CSF leaking, how long till it goes away...should I be on antibiotics, etc ugh. Done. It's hurting just too much.

[selmaS]

  When our body rejects a foreign material as you did with the mesh, it is more likely you have EDS....

  

[Emme80]

Our kinky brains....what will they do with us.  (Lame pun intended). It's all I can muster from me in my pain, frozen state.

[KerriC1]

My brainstem was kinked. Ns saw it in pre op MRI. I just wondered if it ever became  un-kinked.....not sure bout that one!

[Emme80]

(My body rejected the mesh for the hernia repair...it had to be removed, cleaned up & stitched. All so very un-fun)

[Emme80]

Ah. Well,'I suppose that will be a question I'll have for him-just to make sure I know-always good to know for 100% understanding. But yes, he had to take way more of C1 than he had expected (I spoke with him...the last subject made him promise to be careful with) . When I was being prep'd for surgery, he came in & I talked w/him about "please be careful" that fine line of not taking enough, to make the appropriately needed room & also not being too aggressive & taking TOO much and causing brain slump.... I remember him smiling and eking the others around me that I was going to have questions and  "guidance" for him until I was out!  
So...my guess is nothing-neither mesh nor plate. ;)

[selmaS]

  No..but that he took away more of C1 bone ...if too much is taken then cerebral ptosis also known as brain slump can occur....this is why I asked about the mesh or plate.

Oh i hear and understand as I have seen where the mesh for other areas of the body the mesh migrates to other areas.....

All Drs approach this differently some always use mesh or plate...while others allow the muscles to grown back to protect the area where the bone was chipped away.

I do not have mesh or a plate.

[Emme80]

Hmmm.....he didn't mention either. My mom had 2 people w/her so that she could have others hear whatever she heard him say. And yea, she just told me that the only things he said that were extra things he hadn't expected were...that he had to take way more from the C1 (from the C1 laminectomy part) to make room and that my Brain Stem had been/was  pinched pretty bad.
Does that whole 'brain stem pinched' mean that he would've used something to the likes of a plate or mesh?
(Ugh ...just the mention of the word mesh, it reminds me of a hernia repair that went all difficult due to mesh! That was a nightmare- I know this has nothing to do with above topic, it's just the word "mesh"....sends shivers down spine from a hernia repair experience)
But um....no mention of either. If stem was pinched/compressed dies that warrant a plate or mesh? Or is mesh/plate always used at some point in this surgery-did I miss a step/process of the surgery?

[selmaS]

  Hi...yes both the spinal cord as well as the brain stem can be compressed...but not all of us have both being compressed....we are different in that aspect as to which other related conditions we may have.

Did your Dr use a titanium plate or mesh?