Pain & Pseudomeningocele after Chiari surgery 2 yrs post op

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Pain & Pseudomeningocele after Chiari surgery 2 yrs post op

Postby lorwi » Sat Aug 04, 2012 11:48 am

Hi everyone - Haven't posted in a long time and I'm sorry if this is going to be a bit long winded but here goes.

I had my decompression surgery in October of 2010. The surgery went well but I did wind up with a decent sized pseduomeningocele that I still have to this day. For about 2-3 months post surgery I seemed fine but then I began to struggle with headaches again. Not "our" typical chiari headaches but more "pressure" type headaches. I went back to my neurologist and we began treating me for possible intracranial hypertension although I did not present with the "typical" symptoms. I've been taking Zonengran for about the last 6 months starting at 25 mg and going up to my max dose of 400 mg. I had a spinal tap about 4 months ago with a pressure of 23. So, with the max dose of Zonegran and a pretty good weight loss of 45 pounds, if it truly was the intracranial hypertension, the headaches should have decreased. I had another spinal tap 2 weeks ago and the pressure is lower - down to 17 but.... headaches are no better. I had another brain MRI and thought maybe we had found something - sphenoid sinus disease showed up but that turned up to be mild and the ENT said couldn't be causing my severe headaches.

So.... I'm back to square one and thinking that possibly its this damn pseduomeningocele which is still there and which I can absolutely feel. If I press on it, I get the strangest sensation - those of you that have had it understand - its a very "liquidy" sensation that I can feel almost all the way to the front of my face - its all very odd. I still cannot lay back on anything hard. I continue to have horrible neck pain - almost like my neck never healed properly - possibly because of the pseudo. I don't know. I'm at a total loss. All I know is that I have headaches every day. I wake up with a headache and I go to sleep with a headache. The headaches worsen with the weather and barometric pressure. Luckily the Zonegran helps me to sleep so there's no issue with sleep.

I do have an appointment on the 22nd with Dr. Neil Miller at Hopkins who is the head of their Wilmer Eye Center so I'm hoping he might have some answers but maybe I should be seeing a Chiari expert - I'm clueless. I also have been diagnosed with EDS so might that have something to do with all of this as well? Any advice would be most appreciated. Thank you so much, Lori
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Re: Pain & Pseudomeningocele after Chiari surgery 2 yrs post op

Postby zenkeeper » Mon Sep 10, 2012 1:57 pm

Hey There.. I responded to your other post re: titanium plate.

Seems we have something else in common - an on-going pseudomeningocele! At one year post op I still had mine and was told by my NS that it would go away on its own. WRONG!!

To this day I still feel something back there and have the SAME symptoms that you describe, so I know exactly what you are talking about.

Question is are my symptoms coming from an residual pseudomen. or is it the soft spot/need a titanium plate issue causing headaches/pain? Maybe both.

After I have been active it really kicks in and I cannot even move my head without feeling something very odd back there is a golf ball back there along with all this tugging and pulling from my muscles that have attached to my dura.

BTW...I have been back and forth to the ENT about potential sinus issues as well. Yes I have mild sinus issues and allergy meds help but it does nothing to the issues in the back of my head. Two years post op you would think we would not still be dealing with this.

Do you know if the NS can see the pseudomen. if he were to put the plate in there and if so could he drain it during your surgery? Also, do you know if he can actually see the patch once he goes in to put the plate in? Be Well. ZK
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