Chiari surgery for 3 year old going ahead

[BKMinnesota]

Hi,
I had posted a question in first week of September and have been mulling whether to go ahead or wait for surgery. We finally called the doctors office last week to schedule and they are looking for dates.
The problem we have is our 3 year old is non verbal and has diagnosis of autism as well, so we are not able to figure out if his symptoms are due to Chiari or just Autism( well our experience has been that every thing under the sun can be attributed to autism).
But we spoke with Dr.B in NY recently, and our surgeon in Minneapolis(both on the list) both think our son is a good candidate. Mainly bcoz he is showing weakness, does not want to hold stuff or play stuff like kicking a ball, ride a bike etc.. which he used to do previously, has a preference to sit with support or in a W, prefers to isolate, and sensitive to sounds/lights. We got a spine MRI as well which came back clear. We talked with a geneticist who said he does not see signs of ED syndrome. His Brain MRI shows tonsils at C2, very crowded, no posterior csf flow, and one doctor pointed out one had descended more than the other. They also think it might help him function better.
Just wanted to know any opinions or thoughts, nervous about surgery, heard about complications in kids like requiring repeat surgery and cervical instability.
Thanks Selma for responding to my earlier post
Thanks

[selmaS]

  For each of us our reason for surgery may be slightly different....but  for me and what I feel we all should look at is how is Chiari affecting my overall health.

For instance....if a CSF obstruction is there  with life altering symptoms having surgery will help prevent a syrinx from forming which could lead to more severe health issues and symptoms.

The lack of interest could be due to how those activities make him feel afterward....regardless of how much we like something....dealing with the aftermath can deter us from participating.....

I did not like riding a bike and I knew it was the style of the bike that was more of a bother to me since it was the type you bent over toward the handle bars and it put a lot of strain on the neck and shoulders....my hubby got my a more old fashioned bike...which was better for me....but when symptoms flare the Drs even say a recumbent bike is best as it supports the back and shoulders.

The isolation is due to when there is too much going on it is like all the nerves are exploding or frying....we get overwhelmed...so we withdraw to help keep that  over stimulation to a minimum....he is doing what he needs to help feel ok....it is a natural response to how we feel in those positions....I did the same thing for many yrs....

The sleep study is not something used to determine surgery or not....but whether or not he needs close monitoring post op.....kids tend to have more issues with the sleep apnea and it can create a serious issue should surgery be an option...so it is something you want to know b4 hand....

Sleep issues is something we all have....so knowing if it is just insomnia or apnea is important.

[BKMinnesota]

Hi Selma,
Another question ..sorry,
Is weakness a reason to get the surgery, one thing we have seen in our son is he seems to be very less interested in biking, playing, kicking etc.. and seems less coordinated but does not have balance issues, he used to isolate himself, but is getting better.., so wondering.

We did not do a sleep study, how does that affect whether we should get surgery or not as not of the physicians wrote an order for it.
Thanks
BK

[selmaS]

  Hi...I know this was not an easy decision to make as I know it was difficult for me  to decide to have it done for myself....not my child....

The repeat surgeries are typically needed due to the Drs trying to do a less invasive procedure  and not opening the dura...this can have short lived benefits and why the surgery is repeated...the 2nd one they ha e to open the dura....

I really feel Drs that do not want to open the dura are not as experienced with this surgery....so that in MHO is why it happens.

Do you have a Dr selected and a date of surgery? If so, please post on the list your surgery date thread so we can post a Prayer thread for your son.