nausea, vision problems

[Suzmd66]

My son was diagnosed with insignificant Chiari by a radiologist at age 16. Little did we know when we wanted someone who sees the condition regularly, NS at Johns Hopkins evaluated the MRI and his CSF was drastically diminished. surgery was required.  He had successful decomp surge   Now 2 yrs have passed maybe he is better off. His horrific HA have stopped and his csf is flowing and he wont be at risk of syrinx or other cerebral press. Problem: where his brain was use to living with no space, there is now much space. According to his NS, he did not need to insert a shunt and the surgery was successful. The op report indicated very thick muscle and soft tissue and he did go through the dural space. From all indications, he has a lot of scar tissue.  His migraines have switched to "abdominal type" and he bouts with nausea a lot. He has vision problems with convergence and explains that his brain feels "wound too tightly" and he then sees life in "snapshots"..ie, he sees blocks of vision when looking at things and his eyes fatigue after 15 min.  His appetite is not good and in the last 2 yrs since surgery, he is 30 lb lighter.One piece to the story is that he is an athlete that excels and was advised he could go back to playing football 6 months after surgery. He did so, which likely caused his problems to become worse. He suffered another concussion before quitting for good. He is trying hyperbaric oxygen upon recommendation of a neurosurgeon (2nd opinion doctor to return to football). This doctor diagnosed his vision problems which are related to messaging between his brain and his eyes...although he has 20-40 vision. He was then referred to a behavioral optometrist who prescribed reading glasses and sees a neurologist for the other symptoms.His life has changed for the worse since diagnosis and decompression, although his cerebellum is clearly not in the cord area which means he shouldn't have to have another surgery. Suggestions, or input would be appreciated.

[Daniel M Prevedello, MD]

Dear suzmd66

Once again it is not easy to give a formal opinion without examining him or looking at imaging.
The LP with opening pressure is a way to rule out intracranial elevation in pressure. You should discuss that with the neurologist.

[Suzmd66]

Thank you for your response. I know his case is complex and without the scans you would not be able to advise. He has never undergone a lumbar punture although his neurosurgeon at Hopkins mentioned it 4-6 wks after surgery when advised of his symptoms and told us to see a neurologist. He sees a NL at UPMC and his assessment 1 yr after surgery was that his brain was getting accustome to it's new space. He did not mention a puncture.
We continue to get MRI's with the symptoms to make sure all looks well and so far, nothing stands out. He will see the NL again Feb 21. Could you give me more information on Lumbar opening preasure measurement?
His only meds are imiprimine and zofran. He is still highly active despite his feeling poorly and convergence issues. Is it true that most neuro patients need more rest/sleep?
Have you seen a correlation between neurological symptoms arrising at the barometer drops? I came across this and it seems to be the case with him the last two winters, postsurgery.
I know this is a lot to ask of a Dr never seeing a patient but found the forum and thought your background and knowledge may be a match for his problems.  Thank you.

[Daniel M Prevedello, MD]

Dear Suzmd66

It is a complex story to give you an opinion without looking at the imaging or getting more information.
My initial question for you is:
Did he have a lumbar puncture with opening pressure measurement?