I am almost 5 months post-op now. I have been doing remarkably well with the exception of cough and sneeze headaches. About a month ago I had a major coughing spell and my headaches changed. I called my NS (I have moved to a different state, so coordinating my care has been difficult) and he ordered an MRI, flexion/extension MRI and CINE MRI. These are the first images that I have had since surgery.
Good news:
My brain is now, in fact, inside my head
My CSF flow is normal
No other tumors were found ( I had a surprise tumor show up during my surgery....)
Concerning to me:
There is a collection of CSF between the line where my skull was removed and the muscles in my neck (see photo)
My NS wrote it off as being normal WITHOUT EVEN READING MY MRI. He just read the radiologist report. Because I moved, the radiologist didn't even know what surgery I had or when I had it. I am in disbelief. He wouldn't explain anything further without me driving 8 hours and visiting his office.
So, I am getting a second opinion from a new NS in my area. I just need a professional to actually read my MRI and explain it to me. I need to understand why a have CSF where I don't think it should be.
Honestly Donna, if my NS was that uninterested in actually looking at the MRI that would make me want to go another opinion anyway. I’m glad he ordered the Mris, though. He should have discussed this with you when knew about it, it’s kind if your business. Sorry this is happening
You have a post-operative pseudomeningocele(CSF leak). Many will spontaneously resolve(although that usually happens within weeks of surgery). It does look like you have a good decompression. However, any Valsalva maneuver(raising your intracranial pressure, e.g. cough/sneeze) will squirt more CSF through the hole. usually, it is simply a stitch that let go before your dura completely healed. You are going down the correct pathway. See a neurosurgeon comfortable with Chiari. We all have variations on treatment but most follow similar paths.
In my practice, I perform a repeat sub-occipital craniectomy(go through the same scar down to the dura). Often, the hole is evident, takes a single stitch, and you close up. The operation is usually about half of the initial Chiari decompression(no bone work, no intradural exploration). If you stop there, there is no reason to think it will be any better than the initial closure. therefore, I also place a lumbar drain intra-operatively(a tube going into the lumbar(low back) CSF, to serve as a pop-off valve) for a few days. After adequate drainage(usually 3 days), I clamp the drain and monitor intracranial pressure. There is a recent post on this site from someone with a shunt. the reason to monitor ICP is to make sure that elevated intracranial pressure isn't an additional pathology(can be a cause for both Chiari and CSF leak).
Same decision process for closure of CSF leak as for Chiari decompression. How much are the symptoms bothering you? If enough, get it fixed. Again, it is very unlikely to improve spontaneously this far out from surgery.
I saw the "gatekeeper" NS at the University of Wisconsin Hospital. It turned out he was a spine specialist. Not ideal.
He said that "everyone with a Chiari decompression gets a pseudomeningocele" and I shouldn't try to fix it.
This is confusing, given what Dr. Trumble said. However, I have way more faith in Dr. T than a spine specialist.
So, I now have the Chief of the UW hospital NS department looking over my case (when he gets back into the country) and I have sent my records to the Wisconsin Chiari Center.
You are doing the right thing. When 2 MDs disagree, get a third opinion.
Pseudomeningoceles are a known complication that occurs, in most reports in approximately 10% of Chiari decompressions with intradural exploration(it's why there is controversy about intradural exploration, even though most of us with reasonable volumes open the dura). Not all are symptomatic and not all need to be surgically repaired. Again, those decisions are based on your clinical course.
But having a pseudomeningocele is not the expected course.
Sorry but I disagree with the "gatekeeper" NS at Univ of Wisconsin. They are wrong. Everyone with Chiari Decompression does not get a psuedomeningocele even with Duraplasty. Please let me know when you get a decision from the Chief of NS. I would love to write them a letter.
