chiari malformation surgery

[bharvel]

Can anyone give me doctor's names who perform chiari decompression surgery along with tonsillectomy?  I want the best results for my daughter and don't want her to have repeated surgeries.  With researching I find this happens over and over because more neurosurgeons won't resect the tonsills.  Thanks.

[janie920]

I am not seeing a doctor for this at Mayo Clinic.  But I have to say that I have been seen there, and it is a Wonderful hospital, and the doctors are top of the line..So good luck if anyone wants to go there..I would say go...if you don't have insurance, you need money up front, but they work with you. It is a huge hosp.  The accountants, were so nice, and they didn't judge me when my dad paid them 3000 up front, and then we had to make a payment plan...I live in Wis, and tons of people from here drive out to Minn. and go there.
Good luck..
I always thought that if i didn't have money I would be shunned for medical...not at mayo...

[gem10]

My daughter had her chiari surgery done at Mayo hospital in Rochester Mn. People from all over the world come here for medical treatments and our experience was really good there. Dr. Raffel did my daughters chiari surgery and he was excellent. Unfortunately he moved shortly after her surgery, but their are other experienced neurosurgeons there that perform this surgery.  Dr. Raffel is an pediatric neurosurgeon.  Look him up they said he is now the head of pediatric neurosurgery in some other state.  Whom ever you find make sure to discuss the neck muscle issues after surgery.  He told my daughter to keep up with moving her head from side to side after surgery and beyond to prevent too much scar tissue build up. He didnt suggest physical therapy, at least not right away,and I dont know why. They are neurology and dont deal with muscle.  I wish we would of started physical therapy sooner.  Its hard to motivate a teenager to do these excercises when they are feeling hopelessness.  It's a hard three month recovery just be her rock and she will get through it.  Its been almost 3 years and our main problem is the neck muscle,and scar tissue.  She was always a good athlete and this aspect of her life is not going well right now.  The physiatrist thinks she tore some muscle in her neck. That takes a while to heal.  Make sure she turns her head. The muscle gets shortened when they cut through it so when my daughter got really active it tore. So physical therapy helps lengthen and soften scar tissue and muscle so she can be more active, but my daughter wasnt consistant with them and its a MUST.  Some muscle gets destroyed so you have to build up the good working muscle in order to not get fatigue in those muscles.  We learned as we went along and I wish I would of had someone to tell me this. She might not be having the troubles shes having if we had help, but I didnt know who to go to.  I didnt know what a physiatrist was.  Hope this helps.

[selmaS]

HI and welcome to the Chiari forum.

I had the surgery as recently as this May....I have pics and my account in my profile if u want to read it.

It is very normal to be frightened....however, u r by no means alone....there r many of us here....and if u continue to post ur concerns and questions I hope we can help u feel less alone.

"selma"

[janie920]

Hi, my name is jane anne, and I am having the surgery on Oct. 16.  My doctors name is Dr. Weinshel.  He is at Bay Care in Green Bay, Wi.  He like him, cause he really looks at things about you and your case.  He took time to listen and answer my questions. It did help having a friend there. I really think it is good to have two sets of ears when its this important. He had his fake brain, and showed me exactly what he is going to do. He has to cut into one of my tattoos, and he actually said he was sorry for that since it is a memorial one.  Good Luck.  I don't even know much about this, or why I have this. I am very afraid, and even though I am not alone, I really feel alone. So I had my kids shave my head for fun, and we are dealing the best we can...thank you
jane

[selmaS]

I had the pleasure to meet hima nd have a conversation...he is a very nice man and well respected in the chiari community....did u see the poem he wrote at the top of the forum?

I do not know how he handles the tonsils....it wasn't part of the convo...sorry....but he is very good....u should call and ask some questions....

Did u find our chiari specialist thread here on the forum?....other members have listed NS that they were happy with.

"selma"

[bharvel]

We will travel to where ever.  We are considering going to Dr. Oro in CO.  Do you know anything about him?

[selmaS]

Hi.....yes Dr Rosner has had this problem twice b4 that I am aware of and am sad to hear he is having it again.

I went to TCI in Great Neck, NY......and had my surgery May 28th of this yr.......my tonsils were corterized.....

Not sure how to tell with the other surgeons except to ask......I believe there is another Dr in NC, but I'd have to research a bit.

Do u want to stay close to home or will u travel?

"selma"

[bharvel]

Yes, I am referring to the tonsills being corterized or the botton portion removed.  I am in NC and was going to have surgery by Dr. Rosner, but the NC Medical Board chose not to renew his license, which is undeserved!   He has done everything they required and they still chose not to renew.  This has left his patients in a desperate situation.

[selmaS]

Hi and welcome to the Chiari forum.

I want to be susre I understand....u want a NS to remove the herniated tonsils?

Because mine were corterized...(sp)....so they would retract.


May we ask what corner of the world u r in?...plus we do have a thread on the forum here which is a list of chiari specialists we (the members) have been to and liked.


"selma"