Hydrocephalus after decompression

[Krystinamarie]

Just wanted to see if anyone has had a similar experience if so what was your method of treatment?

I had decompression surgery in 2014 but my symptoms only worsened. I continue to have pain and migraines but the newer symptoms (symptoms after surgery) include chronic fatigue, intense pressure, weakness in my neck. I've had images done that suggest scar tissue build up is blocking the flow of csf. Surgery was suggested (ETV) but I'm very wary of the idea of another major surgery. Has anyone experienced this?

Thanks in advance!

[garyan]

Hi , I had a blocked third ventricle which was by caused scar tissue front a thalamic abscess 12 years before. I had an etv about 5 weeks ago, it doesn't seem to have helped.  Chronic fatigue, memory, concentration, coordination  and visual problems on top of the constant headaches.
My only other option was a posterior fossa, which would have meant taking a large bit of skull off the back of my head and going in from there. ETV seemed like the best idea in the first instance,  in and out in about 36 hours  (couldn't stand the strip lights!)

[selmaS]

Hi...I am so sorry you are having these issues post op and they are not uncommon....I have not had them but I know a few members that have. Several have found out that the dura patch was partly to blame as they also have EDS and it can cause you to reject the patch and the body creates more CSF to flush the foreign material out of the body...the extra CSF causes pressure and pain.......Scar tissue is another issue for those with EDS......

Have you had EDS ruled out?