Chiari Malformation Community
Quality of life?
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Quality of life?

Hi Everyone,
I'm new to this forum (actually, any forum), and I was hoping to get some input from anyone who has suffered from complications post decompression surgery.
It all began 2 years ago, when I hit a tree skiing. I suffered a severe concussion, but bounced back pretty quickly from the accident. A few months later, I began having neurological issues that were pretty serious, and after going from one doctor to another, I was diagnosed with Chiari. It may have gone undiagnosed if not for the accident, but the herniation was made worse from the accident, and surgery was required.
I had the decompression surgery, as well as a duraplasty. Two or 3 months later, they had to open up my head once again to fix a leaking dura patch. Two months after that, the patch leaked once again.
At that point, I was diagnosed with hydrocephalus, and when the third surgery was performed they also placed a shunt into my head to regulate the high amounts of CSF fluid in my brain. The shunt drained into my belly, but after 6 months or so I was experiencing severe stomach pain and I had another surgery to revise the shunt so it would now drain into my heart.
That worked out well for a while, until the shunt began to malfunction at epic proportions. It would change settings on its own for some unknown reason, and over drain the CSF fluid. One month ago, the shunt was pulled out altogether.
To say I've been put through the wringer is an understatement..
I have always remained optimistic, and it's what has gotten me through some really tough times. I believe that when we go through through such trials and tribulations, there are valuable lessons to be learned both about ourselves, and our loved ones. I have always had hope.
Now, I feel like I'm just hanging on by a thread. My headaches are intense, and always present. My quality of life is greatly diminished. Right now I'm on a low grade vicodin, which helps for about an hour, and then the pain returns. I have plans to travel extensively this summer, and now I'm not so sure I can handle it.
My neurosurgeon just recently referred me to a pain specialist, and I see her Wednesday. I'm not sure about what to expect.
Honestly, I'm not even sure why I'm writing this. Maybe I'm grasping at straws, hoping somebody can provide me with a miracle, or words of wisdom.
Is there anybody with a similar story? Can anyone offer suggestions about a certain medication which has worked for them?
I fell desperate, and thats so out of character for me.
4 Comments Post a Comment

  Hi and welcome to the Chiari forum.

I am so sorry u had this experience...and I know we have a few members with a similar story.

I had surgery, but did not have all the issues u had, but I have a few questions for u....

U mentioned u had a few leaks , and I wondered if u knew what type of dura patch was used?...Were u checked for ehlers-danlos*?

And last y was ur shunt removed? Was it programmable? I read that using a Ipad can affect the, if u do not use one but someone nearby does this may affect the settings....

So many that have had issues like urs found out post op they did in fact have EDS* and that was contributing to the set backs and leaks they had.

I think we ALL feel desperate with dealing with Drs that do not know more then we is a very frustrating experience trying to get the proper help.

Hang in there....u r not alone <3
I opted for a cadaver patch after doing research, and reading about issues that some people had using a synthetic patch. For some reason (even though the patch had sprung a leak 3 times) they never replaced the patch. Instead they elected to reinforce the stitching around it. I have often questioned why, and when I brought it up to my neurosurgeon, he stated that the healing process would take considerably longer.

The shunt was removed because it was malfunctioning. I had to see my neurosurgeon about 5 different times to have it reset to the proper settings.

Right now, it is a "wait and see" situation. Hopefully, my body will regulate the CSF fluid on it's own now. I have read that the magnets on iPads can cause the settings to change, and always stayed 6 feet away from my husband while he used his. I was also weary of airport metal detectors, and X-rays, and chose to have them manually pat me down rather than taking any chances with my already wonky shunt.

As of now, I'm sure that the dura patch is healed and holding up.

It's the pain that's eating me up. Why is it so intense? I can't figure it out.

Thank you so much for your reply. It means a lot to me.

  Well that is y I asked all those questions, if EDS was ruled those with EDS can reject foreign matter, like the dura patch, this is y my Dr harvested tissue from my scalp for my patch,....less likely to reject it,.

It seems those that reject a patch, have leaks, and more issues with high CSF levels....this an observation  I have made over the yrs....and I am not a medical professional...but with what my Drs told me and what I see happen to members here it seems to be a common factor,.

The other issue with those with EDS, if u have a lamenectomy it can cause cerviocranial, more pain....

Also if ur CSF levels are high u will have intense pain...

U may want to get another opinion from a Diff Dr...
I did have a laminectomy.

Selma, I will look into EDS, and thank you so much for taking time to reach out to me.
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