What to do - different opinions

[BKMinnesota]

I have scheduled chiari surgery for my toddler son after getting a couple of opinions, but I got another opinion from Dr.Frimm, who said that he was not sure he needed it, as his symptoms could be due to other reasons/ issues he has, and he does not see clear symptoms.
He does not have a syrinx, but does have partial blockage.

[selmaS]

  Hi....the type of patch used should reflect whether or not the patient has EDS...and we ALL should have this ruled out B4 surgery is considered.
Related conditions are the reason a patch may be rejected or a infection develops as the body tries to flush this foreign matter from it.....

The synthetic patch can fail and cause infection just as the bovine or cadaver patches.....

My question would be of those 50 to 70 surgeries how many were DX'd with EDS and those with the leaks how many were DX'd with EDS b4 surgery or after? That to me gives more info then how many they do in a yrs time, BTW- 8% is a low number in MHO

[BKMinnesota]

Hi Selma,
They said, they would use the artificial patch not porcine, some thing latest,
Some doctors said they really like use the pericranium patch from your own body.

I have read that there is around 8% chance of further complications, have you heard of that high a rate, the surgeon we are working with had only a couple of csf leaks in two years and he does around 50 to 70 an year

[selmaS]

  Did they say what type of dura patch would be used?

The patch is an  important part of this procedure bcuz if you have EDS your body can reject it causing a leak, infection and other issues.

[BKMinnesota]

Hi Selma,
Thanks for your reply. Yes, 2 of them are on your list, one of them does one chiari procedure a week, and the other one is a famous chiari doc as well. We have gone through several MRI, genetics doc looked at his joints and ruled out ED syndrome.

I think the main thing I got out of all my research was since my son is non verbal still, he cannot say how is feeling, chiari symptoms overlap with other conditions (autism). Yes, we have got some doctors saying you can monitor him, but also some said it is a straight forward procedure which can help him.

[selmaS]

Please keep in mind not all on our list are true Chiari specialists....they are names of Drs that a member here has been to, been treated by adn liked the list is offered to help you research Drs it is no way is a referral nor an endorsement of those listed....so just bcuz it is on our list does not make them a specialist.Those that want to do the procedure what exactly do they suggest doing...as there are different types of surgery that are performed for Chiari decompression

[BKMinnesota]

Removing the C1, Opening the dura and shrinking the tonsils (catherize) was what I was told

[selmaS]

@BKMinnesota- My question to you is this.....were the other opinions from true Chiari specialists and were ALL related conditions ruled out. Could be monitoring his condition could be the best option......

Unless you know the background of ALL the Drs it can be difficult to know how to compare them and which one to listen to. You may want to investigate those other possible reasons for your sons symptoms as they can cause issues with post op recovery.