Dr. Recommends Chiari Surgery

[lalalisa]

Angela,

Hello! I just wanted to write and let you know that we're here for you. I'm sure it must be really difficult having 2 specialists telling you 2 completely different things about your health! WOW!!

It sounds like you need a lot of wisdom! Thanks for keeping us up to date about everything.

Take care and I hope you find some answers!

Lisa

[Sophia3]

WOW how totally &$^@!%^%#!^ frustrating for you Angelika.

Well, first, I would not get the surgery.

IF that were critical, at least a second doc would have agreed.

This doctor that told you this today, is this the one that wanted to FOLLOW up the spinal meningitus stuff?

THis limbo like merry go round you are on must be pushing you to the edge...however, you must remember those that do major SURGERYS are prone to lean towards surgery.

I am concerned for how you are FUNCTIONING..can you walk a straight line...taek care of your kids without stumbling.can you drive? Can you cook. I know you are greatly FATIGUED but I can't remember how much headaches were an issue for you (sorry brain fog)

If you can do all of those, i would rule out surgery. But you could have a migraine problem...but I would ASK for copies of the neurological tests from Dr. H. Take them to a neurologist or have you done this as well?

NOTE CHIARI is RARELY the cause of ANS issues but "Sometimes is" from what I used to be told..there IS no guarantee...it can add to them, but most folks that have had the surgery from what I HEARD, had HORRIBLE neuro problems...but still had ANS issues after surgery....though maybe to a lessor degree.

I am sorry this path for answers has led to more confusion and frustration. But I would be VERY conservative before jumping into surgery as that rarely stops after ONE surgery as you no doubt know...I am sorry not to be more positive but I ache for you and NOT having an answer...i still don't have a real answer for my POTS after all these years either....

[goldicedance]

Oh, Angelika....you must be under such angst just from the ping-pong bouncing from one doctor to another.

My advice would be to try conservative measures before surgery.

Be strong...your family and friends need you.

Lois

[stellakitty]

I concur with Sophie...

Also... Chiari decompression most likely isn't going to cure you of POTS but help with your central nervous system symptoms. I see Dr. Menezes in Iowa (for now... I go back on jan 18) and he told me that even after my spine is fused (I''ve already been decompressed... overly actually, which I will get to) I will STILL have sytmptoms. His genetcist concured... The hope is to get me functional (I'm homebound, practically "floorbound", I sleep on the floor).

Another good reason to procede with caution is that this surgery has many risks... Example.... I am now part of the endura bovine dural substitutue recall. Which was recalled because their products weren't sterile... And this is in my BRAIN! No wonder I got meningititis and about a million different kinds of staph that required the docs here to go BACK in my head... Now I'm spiking low fevers (between 99 and 100... high for someone that runs around 96*) almost daily and something is WRONG. I saw an infectious disease doc last week and he feels it could be the dumb patch (wasn't sure though...)... Now when I spike a fever above 100* with worse symptoms (so hard to tell these days) we have to go to the ER for another LP and another CT.

If you need this surgery I don't want to scare you... If you are having "drop attacks" that is typically a good indication for OR. I also understand that UNBEARABLE, CONSTANT headaches, are usually a good indication as well... As I've said in previous posts I've not had a headache below a 7/10 in nearly 7 years (now on roxinol prn). But POTS alone really (in my opinion) doesn't constitute cutting into your head. I remember the weeks leading up to my decomp I had severe double vision that wouldn't stop... It SUCKED... I couldn't read or anything. Of course I'm not a doctor (I still have to graduate from highschool), but this would be my personal experience and what I've gathered from reading LEGITIMATE sources (NOT wikipedia)...

You're more than welcome to PM me if you have any questions...

Alexa

[Angelika_23]

Alexa,

I thank you for your advice.

I am not going to jump into anything without lots of research and more opinions from doctors. And, as I've posted lately in another thread, I am actually doing better lately, so maybe it will become a non-issue... We can hope!

I have dropped myself off the Florinef, a quarter tablet at a time over about 6 weeks time, and I am wondering if that may be part of my wonderful changes... I was on a half pill for a long time, then it got changed to a full pill, and while I was on a full pill my symptoms really were hitting hard. After going through everything that was changing at the time, I started to suspect the Florinef. It is a sort of steroid, I think, and my body does very badly with steroids. (Is that weird or what?) So I started dropping the dose down very slowly to see what would happen.

I am hoping that I can continue to have good days like today!

Angela

[Sophia3]

Angela

I ain't no doctor, but didn't you have HIGH spinal pressures? If so, Florinef would add to that issue, wouldn't it??

That's probably why you are feeling some improvement, and I hope you feel better.

Stella Kitty that STINKS about the bovine piece recall. GEEZ..I remember somebody being worried about that stuff being sterile before either they or a family member got that inserted or a follow up surgery...somebody here..Nina maybe? Anyway, I know you have had a long hard road and it's WISE to avoid this surgery.

You can always try everything BUT the surgery but once you cut into the brain/spinal column, life ain't the same.

I hope you can get the help you need AND deserve Angela. Keep talking to folks who have GOTTEN the surgery and make a list of pros and cons.