Was your expectations of chiari surgery fullfilled?

General
1

This question many of us want to know.

Did your doctor explain fully?

Do you think you were tested for the other conditions that might complicate the surgery out come?

Was the surgeon one who was in to much of a hurry to sign you up for surgery?

How are you today?

How many years ago was your surgery?

Do you feel you have been cured?

What do you think your chiari status today?

Did you do your research on Chiari Surgery?

Some of these questions, I want to know. Some of these questions have been asked by others.

If you have questions, please list yours here also.

2

This question many of us want to know.
Did your doctor explain fully?
My surgeon did. My pcp googled chiari so she could tell me what I had.
Do you think you were tested for the other conditions that might complicate the surgery out come?
Yes my surgeon checked to see if I was flexible and said he didn’t feel I had eds and I saw a rheumatologist who also said I didn’t. I had a full spine MRI and was said to not have tethered cord

Was the surgeon one who was in to much of a hurry to sign you up for surgery?
No. I saw him first in December 2012 and didn’t have surgery until April of 2013
How are you today?
I’m ok. I don’t have raging headaches anymore. I am still tired a lot. Still have some neck pain but most of the time I don’t need any pain medicine. If I do it’s just ibuprofen. I have memory and word finding issues. It’s not as bad if I get enough rest/sleep
How many years ago was your surgery?
It will be two years April 5th. But I had to have a surgery to replace my dura patch in November of 2013
Do you feel you have been cured?
No but I do feel better than before surgery.
What do you think your chiari status today?
My last check up last June I had good csf flow
Did you do your research on Chiari Surgery?
Yes
Some of these questions, I want to know. Some of these questions have been asked by others.
If you have questions, please list yours here also.

3

This question many of us want to know.

Did your doctor explain fully?

No. He did not fully explain the procedure. I told him what I knew about the surgery and he agreed without any further information given. The hard part was convincing him to do to the surgery. At the time he was saying a 5mm herniation was not enough to have surgery but the CINE showed blocked flow. We, my wife and I, had to keep referring him to the CINE MRI, that blockage was the only reason he completed the surgery.

Do you think you were tested for the other conditions that might complicate the surgery out come?

No. No one did any additional testing. My PCP, NL, the NS did not do any. I knew my PCP would not as we were learning together. My PCP only completed the Pre-Op testing. I think if I would have had more testing my results might have been better and other problems (not all CM related) could have been identified.

Was the surgeon one who was in to much of a hurry to sign you up for surgery?

No, he did not want me to have surgery as he said 5mm was too small to have surgery. It took us a while to get him to go with the CINE.

How are you today?

I feel as if I am in the military again under Bush and Clinton with Don't ask; Don't tell. Seriously I feel worse, considerably worse than prior to the surgery. One thing to the NS credit though he did give me the rule of thirds ~ third will get better, third will stay the same and third will get worse. Still trying to cope mentally and emotionally with all that has happened.

How many years ago was your surgery?

My surgery was 2 and 1/2 years ago. It was a birthday present to myself.

Do you feel you have been cured?

No, I feel worse now than what I did before the surgery.

What do you think your chiari status today?

Decompressed with adequate CSF flow after numerous consults with numerous NS(s). We were searching for anything that the original NS might have missed but to no avail. Even after one NS fully read his Operation notes, and follow up notes that clearly stated that I was having problems during the Post Op period and they were not adequately addressed.

Did you do your research on Chiari Surgery?

Yes. I did a very detailed post on Facebook to inform my family about what I was about to go through. I also published it here first to get information on if I had all of the information correct and with a few exceptions like it was an older technique that was being used and described and the length of the surgery (time). I know doing my research made me feel better about the surgery itself, I was mostly calm before the surgery. Nerves became frayed due to the NS being late and I was very cranky for not eating and was nervous that something happened to the NS and I would not have my surgery. Who knows with him running late maybe he did not do something as thorough as he should even. Maybe he used the expression of "Close enough for government work."

Some of these questions, I want to know. Some of these questions have been asked by others.

If you have questions, please list yours here also.
My questions are:

  1. If you feel you had a failed surgery, how do you cope with it mentally and emotionally?
  2. Not dependent upon the outcome of your surgery, what can we do to help more CM sufferers?
  3. What was the deciding factor to have or not have the surgery?
4

I had decompression surgery 10/2013. My NS did not perform the duraplasty because he saw immediate flow. The relief was immediate and amazing. But only lasted approx 4 months. I am now back to severe headaches daily. Saw the same NS and he advised that there was nothing he could do. Saw another NS and he advised the initial surgeon didn’t go far enough but there is nothing he can do because of scar tissue. I have tried several meds with no help. Feeling hopeless.

5

Did your doctor explain fully?

We had done a lot of research going into surgery; common misconceptions of results being one of them. When we

consulted with the neurosurgeon, he covered the basics and answered most of what we had be concerned with. I

believe I was in shock at this point, and didn't ask anything else. We were just impressed with his staff & his attitude

with how to handle everything.

Do you think you were tested for the other conditions that might complicate the surgery out come?

I have been pre-tested for EDS...we're pretty sure it runs in our family, and it's mild. Most everything else

had been ruled out

.

Was the surgeon one who was in to much of a hurry to sign you up for surgery?

He was concerned with previously tia's (mini-stroke) activity that had occurred. He did state that we

could wait, but, since symptoms had exacerbated in the last year, especially swallowing issues, that

we should consider doing surgery rapidly. If it weren't for those issues, I could have waited.

How are you today?

MUCH better...I do know that some nerve damage occurred prior to surgery. I still have some numbness on my

cheeks and some on my fingertips. Neck pain is reasonable. There are still some issues with speech; which may or

may not improve. Insomnia is mostly better. The BEST thing is that I can feel my feet. Walking is much better. Swallowing

is much improved & I am starting to put back some weight.

How many years ago was your surgery?

Surgery was 10/27/14...we are still in the "healing" stage.

Do you feel you have been cured?

No cure...this is a breathing period.

What do you think your chiari status today?

The outcome is the outcome...most people expect that everything will go back to the point before symptoms were

an issue. I knew that it had been too long & we knew that some damage had occurred. We are grateful for any abatement

that we get from this. My status: day to day....as before...happy with improvement so far!

Did you do your research on Chiari Surgery?

Looked at all studies & research both here & abroad.

6

Yes, my surgeon explained everything fully, but YES, I had done so much of my own research, including from here. NO, I am far from cured. I never expected to be according to what I have learned, but I am in so much more pain than the bad pain I had before surgery and may need another surgery. I am very torn on how I feel about being tested for related conditions.As much as my doc was thorough with MRI's and he saw things on them a dozen other doctors did not, and had to address tumors and spots found on tests, NONE of the conditions commonly discussed here were ever mentioned and if I brought it up, he would tell me to stay off internet and stop diagnosing myself...just because I asked, especially about a condition that really fit my personal puzzle. He did always personally call me back if I called, but right before surgery I was baited and swiitched to a doctor I did not choose!

7

Did your doctor explain fully? My first neurologist got me more scared than anything, 2nd neurologist (and current) explained everything what to expect what to pay attention to. Even drew me a picture of what a normal persons skul looked like and what mine did and why it was causing the problems I had. He is fabulous.

Do you think you were tested for the other conditions that might complicate the surgery out come? I was initially tested for MS, when that came back negative, they did a bunch of blood work and sent me for an MRI, MRI revealed the Chiari malformation, I was sent to neurologist, got more tests on my arms, and also MRI for CSF flow study. Then they sent that

Was the surgeon one who was in to much of a hurry to sign you up for surgery? When I went to see the neurosurgeon I thought I was going to establish a baseline and that probably didn't need surgery right away. The neurosurgeon walked in and was with me for about 5-10 minutes and in that time said well reviewed your MRIs and records and based on your symptoms I recommend that you schedule surgery before you leave today. It caught me off guard and was in a little bit of shock but at that point was ready to do anything to feel better. I scheduled the surgery a few days later and went into planning mode since I'm a single mother of two

How are you today? A lot better, still good days and bad but not anywhere close to what the bad days were. Even the bad days now are bearable.

How many years ago was your surgery? 7 Months ago

Do you feel you have been cured? No not completely but I fell 100 times better than I did and can now make it through the day without being in tears. I still get tired and have days that I'm sore. Neck pain still here and there but the insanely painful headaches are gone completely.

What do you think your chiari status today? I'm still medicated and was hoping to be able to get off the meds after the surgery and can't wait to wean off the meds or try to next month.

Did you do your research on Chiari Surgery? Yes, lots and lots and lots of research. I wanted/needed to know exactly what the procedure, recovery time, risks, benefits, etc. I was scared to death and didn't really sleep much for weeks before my surgery but it turned out to not even be that scary when it happened. It all went so quick in pre op and then you freak in the operating room and the anesthesia kicks in and you wake up and its over. I was in some serious pain after and super tired for weeks after as I expected. I borrowed a recliner chair but didn't use it because it hurt my head to lean back. Get a comfy pillow and make sure you have a soft surface to lay on my hips were so sore from laying on my sides so much. I slept in on of those gravity chairs for outside in my living room a few times it seemed to be the most comfortable chair for me.