Having symptoms return 3months after surgery

[Nat0607]

Hi Guys,

I had the Foramen Magnum Decompression surgery 3 months ago due to horrible symptoms of Chiari Malformation 1. (Disorientated, nausea, pressure headaches, pins and needles in hands, neck pain, struggling to swallow....)

From surgery i recovered relatively well. Until 2 weeks ago. I woke up with a really bad pressure headache and swelling where the scar is. I went to the hospital to be told i needed a lumbar puncture. The pressure in my head was twice as high as what it should be. So they drained some fluid to half. Straight away the swelling went down to how it should feel. Within a hour though it started swelling. Hospital ushered me home and told me they would send a letter in the post. I am still experiencing Pressure headaches throughout the day now, neck pain, eye pressure, can't sleep as too uncomfortable and hurts.
I called the hospital 8 days ago now advising of this and some answers but they are not helping me.

Has anyone else experienced this or similar? Chiairi malformation coming back so soon? I just feel like my neuro surgeons don't know much about chiari malformation.

Many Thanks

Natasha

[selmaS]

Hi and welcome to the Chiari forum.

We have had several members experience similar issues post op.....but we are all different as to why we recover the way we do....

First, what all was done during your decompression....what type of decompression did you have.....did they open the dura and if so what type of patch was used? And were ALL related conditions ruled out before surgery?

There are a number of things that could be going on and knowing a little more info about you and your surgery could help indicate which is the more likely culprit.

Lastly what have you been doing....daily routine etc....

[Nat0607]

I had the FMD and C1 removed, with the Dura left open.
I have since been to the hospital again to have another lumbar puncture and CT scan. They have advised I may require several lumbar punctures, and a special MRI with a lumbar.  
Once the lumbar puncture is done I have about a hour of reduced swelling and headache. But then soon swells after that and I still have my pressure headache. Both Lumbar punctures have been higher than they would want. And the one I had yesterday was higher than the first.

Seems like it’s going to be a long process. And I thought I would be symptom free after Surgery.

[selmaS]

The dura was left open?  I am not familiar with this and was under the impression the dura must be closed with some type of patch to prevent a CSF leak.

No, I was told surgery is done to prevent formation of a syrinx (Syringomyelia) and slow progression, but was told I would still have some symptoms, but hopefully not as severe as I had prior to surgery....if someone told you that you would be "fixed" they were wrong, if it was a Dr, it was the wrong one to see.

I can not understand the open dura ......that does not sound right at all.
I found an article that suggests leavving the dura opened was an old fashion technique that was abondonded  due to higher post op complications.
https://www.sciencedirect.com/science/article/pii/S2214751917301524