nausea vomiting and vision issues

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 flow
drastically diminished. surgery was required.  He had successful decomp surge   Now 2 yrs have passed maybe he is better off. His horrific headaches have stopped and with his csf flowing,  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 nerves 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
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.

[Spaceystac]

I am sorry to hear his symptoms have returned after surgery and you and your son are still battling through all of this. The Chiari Malformation is a very complex problem that is truly incurable. The surgeries are only to help with symptoms, and keep the neurological function from worsening. Sometime people have complications, or even need multiple surgeries.

   In my opinion I think it is a big risk to the future quality of your son's life if he keeps playing football. The concussion after surgery was preventable, but giving up on something your son loves to do would be hard to do and I understand that. I just think the NS telling him he could play football after 6months is a but fast as is, let along allowing him do do it at all.

I also wonder if he could have Tethered cord, these conditions can go hand and hand, and sometimes symptoms come back after surgery and they find that the cord is being pulled from the bottom of the spine and put a person at risk for syrinx and other complication.  Does your son ever have any lower back pain?
Try going to The Chiari Institute webpage, they have a lot of information on all of the related conditions and treatments for people who need additional treatment after decompression surgery. You can send his information to them and I am sure they would take him as a patient. When it comes to a person losing there quality of life like weight loss and vision loss, that is when they usually op for more surgery, but they still have to find out what to re-operate on if he has restored csf flow.    Good luck to you and make sure you keep posting updates on the Chairi Malformation forum.