Women Only

[Guest guest]

8 years ago I had a hyst, partially through the vaginal vault, until they

reached a HUGE mass of scar tissue ( from a bad appy removal at age 20) that

was too thick to dissect. So they had to switch to an abdominal incision to

finish. I did not have my diagnosis of EDS and Chiari at that point in

time. When I was waking up I had a CSF leak from my nose, and then seized.

They kept me sedated for 24 hours. I guess because of the CSF leak they

were flooding me with fluids during those 24 hrs. When they woke me again

(in ICU) I still had a headache, but no more CSF leak, and they had me

almost sitting up the last 12 hrs. It was the Gyn who suggested after this

dramatic episode that I may have Chiari, but wasn't sure the parameters and

referred me to a Neurosurgeon.

Jenna in MN

From:

[mailto: ] On Behalf Of

sallygnann

Sent: Tuesday, May 08, 2012 9:34 AM

To:

Subject: Women Only

I have chiari 7mm (not decompressed), had TCS 6 years ago and it took my 6

1/2 years to get SSD and finally get insurance! I was just diagnosed with

cervical cancer and am looking at a hysterectomy. For my biopsy the dr was

able to keep my head elevated but explained for the hysterectomy I would be

in a position where my head would be lower than my feet. This is so that my

intestines and other organs will be " out of the way " for this robotic

procedure. I try to follow all chiari suggestions, keeping my head elevated,

not hyper-extending, etc and when I do try to lay flat it feels like I am

drowning in my spinal fluid. He explained to me that if I cannot lay in this

position that my other option would be to get " cut open " which is a longer

healing process (and one that I really dont want to do). I do not have a

Neurologist locally - last dr I saw for chairi was 6 yrs ago at TCI. (I have

yet to find a dr here who " believes " in chiari!!!) With all that being said

- have any women out there had a hysterectomy where they were in a position

like this and if so, how did it go? Any responses would be greatly

appreciated!

Sally G.

[Guest guest]

I had a full hysterectomy when I was 31, I had not been diagnosed with chiari

and syringomylia  at that time so there were no special accomadations, I don't

recall any problems, I hope this helps,

Lorraine

[Guest guest]

I had a hysterectomy when I was 27.

[Guest guest]

I had an ablation and tubes tided last June. Best thing I ever did. I had

been BEGGING doctors for a hysterectomy or something since I was 12 yrs old.

I would have been happier born an IT than dealing with those darn useless

organs for 36yrs of ^%$#. Love it when doctors play God.

I finally found a doctor who wasn't an idiot. We had a lot of discussions

before my surgery and the final result was that they propped my

head/shoulders up on pillows so I wasn't flat on my back during the surgery

and the part where they needed to tilt the table back they tried to do that

as fast as possible.

Aimee

Dallas, Texas

Symptomatic since 1986

Misdiagnosed for 19 years

Even with a diagnosis, got to fight with 9 neurologists and 5 neurosurgeons

before I found one that would help me.

Surgery 12/15/09. 80% improvement in symptoms

Organizer. Conquer Chiari Walk Across America 2012 Dallas / Fort Worth.

From:

[mailto: ] On Behalf Of Jo Anne

Sent: Wednesday, May 09, 2012 9:49 PM

To:

Subject: RE: Women Only

I had a hysterectomy when I was 27.

[Guest guest]

> To:

> From: Hobbsrn@...

> Date: Wed, 9 May 2012 22:48:40 -0400

> Subject: RE: Women Only

>

> I had a hysterectomy when I was 27.

>

>