Meeting with NS on Monday, Any advice?

[bekkah_boo]

Hey guys! First off, thank you for all the great information! What a relief it's been to see all the similarities!! Okay, so I need help. When I met with the NS and got the diagnosis, he said that unless my CSF was blocked, he was not inclined to perform surgery. I had the CINE on Feb 15, but couldn't get in with him until this Monday. (I'm SO danged excited it's finally here!! Darn doctors and their "being out of the office for two weeks". ((Must be nice.)) ) I picked up my reports today (a little pi$$y there-I already had the reports, I wanted the actual scans. But that's a Monday Rant! haha) Here's what the CINE report says: Inferior cerebellar tonsillar ectopia. Diminished but detectable CSF flow is seen posteriorly at the level of the foramen magnum. Preserved normal CSF flow is seen anterior to the cervicomedallary function at the foramen magnum.

I think that's what it says.

My symptoms are the laundry list of symptoms, so I won't bore you with that. I do have a 1CM herniation, and Chiari was listed as the probable cause on all my MRI's and even on the CT scan. (Even though the attending NL at the hospital told me that I was "fine" and there was "no cause for my symptoms"--That day my DH took me to ER because I was confused and disoriented. Basically I was a zombie. It was pretty scary.) I've been marking my days with which symptom is most prevelent on that particular day. (Today is another wonderful sore neck/HA day...) Say, on a side note, anyone get hand shakes real bad? But I digress...

The thing is that both DH and I want to go ahead with the surgery. ANY alleviation at this point would be wonderful...I've been let go from work-was only part-time so I'm not elligible for FMLA, so they said my position is "no longer available". (But I CAN reapply whenever I want/get better/whatever.) Is there anything I can say to the NS to convince him to do it? Does it sound like my CSF is diminished enough to convince him on its own?

I'm writing an argumentation essay due this weekend for my English class on why I think I should have the surgery...I'm open to any and all suggestions at this point. I think DH is more worried than I am, but I do have my "breakdown" moments...

Sorry for the rambling, and thank you in advance for any/all help and advice. You guys Rock!

All my love,
Becky

[jorlex137]

Hello!
I had a abnormal csf flow but the concern was more because of all the crowding.  Make sure you keep a notepad in your purse so when you think of a question you can right it down in meantime before seeing him.
I've found that helpful always having that with me for my future appointments.  

Good luck, let us know what he says!  

[bekkah_boo]

:D Thanks, Ladies! (And thanks for the site, Selma!) I appreciate both of your words, prayers, and advice...it really means a lot...

[*Stormy*]

I agree with Selma..it is showing that the flow is diminished on the backside where the tonsillar herniation is ...therefore it can definitely be causing the spike of pressure in your head. Most of us have normal flow on the anterior side b/c there is nothing to block it.

I get hand shakes all the time..especially at inopportune moments..like when I'm trying to pull money out of my wallet..

I think with these results your NS will be inclined to do the surgery...and it sounds like your symptoms are disturbing enough that it would be worthwhile to pursue it.

I did find relief with one of my worst symptoms...it severely affected my gait and I would say my walking is 80% better. I am still left with a long list of other things for now anyway (I'm 3months post op) but I will never regret the surgery b/c it stopped things from progressing to something even worse. My CSF was noticeably diminished both from the herniation and my cerebellum was squished against the back of my skull...I was told there was barely any room for it to get through.

I too, really pray you find some relief..one less person in pain makes me happy :)
Carolyn

[selmaS]

Hi Becky...I can tell by the way u wrote all that how excited u r...lol.....we do have several threads with ?'s to ask the dr here is one link if u r interested......................
http://www.medhelp.org/posts/Chiari-Malformation/Questions-for-Dr-Heffez/show/1096617

I think it is best to ask how u can contact the dr later in the week as u develop ?'s....it may take a while to formulate articulate ?'s not being ready for what the dr will advise......if u r told u r not a surgical candidate u want to ask y, and what can be done in the meantime and how will u be monitored.....

I know we say blocked CSF is one of the things the drs look at but overcrowding is very important...so if the flow is still moving...but it is diminished so it is not moving like it should...this is all taken into account...along with ur symptoms.....

So ur flow is not normal it is diminished.....and as long as u do not have some of the other issues  like TC, EDS, stinosis and bulging disks, ur age will help u bounce back better than some of us older chiarians.


Good luck Monday

I pray this dr can offer u relief

"selma"

[bekkah_boo]

Also...almost forgot. Has anyone here had the decompression surgery with a normal CSF flow? And how many of you have experienced some sort of symptom relief after surgery?