Chiari Malformation Community
Chiari Srgery
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Chiari Srgery

Wanting/needing information on Chiari surgery.  My son has Chiari 1 malformation and they have told us he needs surgery and we are very worried about it.
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620923_tn?1416285879
HI and welcome to the Chiari forum.

I am glad u found this forum as I am sure knowing u r not alone with this stress and so sorry u had to seek us out.

Children tend to bounce back from this surgery as with any surgery better than do us older chiarians.

First u need to find a chiari specialist u r comfortable with...and they should be able to tell u what benefits to expect...percent wise...and know there is no cure.

Not knowing what ur son's symptoms r....is diff to say much else.

Do u have a dr u r comfortable with?

Many here have had surgery and there r many more in the process of either getting a dx or finding the right drs.

Many of us do need to travel to get to a chiari specialist.

What exactly do u want to know?

I had my surgery in May and am still recouping....I have pics and info in my journal which u r welcome to read...just click on my name.

"selma"
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What specialist did you use?  We are seeing Dr. Heffez in Milwaukee.  There are no specialist anywhere around us.  We like him, we are just worried about the surgery.
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I can certainly relate to your worry. I have a 13 year old daughter who has this condition and basically we have to decide if we should get her the surgery now or just wait. It is such a hard decision to make.
My thoughts are with you and deciding what to do. You are certainly not alone when it comes to what is the best thing to do for your child. I really do know how you feel.
what are your son's symptoms? I live on the east coast and we have an excellent ped. specialist on chiari at nemours DuPont Children's Hospital in Delaware.
Take care,
Chadry
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My son is 15 years old.  We have had a lot of problems finding a specialist.  What is the docotrs name in Delaware.  We are in western Kentucky but will travel where ever we have to.
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hi!
i live in delaware, not far from dupont.  it is indeed a wonderful hospital!!!  unfortunately, i am too old!  lol!  i, too, sought out dr. heffez and was greatly impressed by him and the entire hospital staff.  he was my second opinion.  dr ben carson at johns hopkins in maryland is also supposed to be very good.  he's the one they wrote the book and movie about....gifted hands.  i saw dr. weingart there before i know of carson and went to dr. heffez for a second opinion.  i have chosen dr. heffez.  i may still get a third opinion, only because i have heard of another dr. in pa, but not sure.  it was my original plan to get 3 opinions, but i feel so confident with dr. h.   i don't believe he would suggest surgery if it were not neccesary and he was more thourough than any other dr. i have been to.  don't waste your time at nih.  my herniation is 9.5mm and they did would not even do further mri to investigate....told me i had pulled a muscle and to go home.
i wish the best for you and your family and hope you will keep us posted!!  
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Do you know of anyone who has went to Dr Heffez and had the surgery for Chiari 1?
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620923_tn?1416285879
Hi...I went to The Chiari Institute in NY and had Dr Insinga...I was very pleased with him as a person and a surgeon.

Yes we do have a member that has had surgery from Dr H and several on their way there.

I am sure u will hear from the members that have had Dr H as their dr.

Most of us do need to travel to get to the right care and the right drs....I had to travel from PA to NY...but it was well worth it.

"selma"

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Hi, I am a patient of Dr. Heffez.  He did my chiari decompression surgery in 2002 and I have done very well.  Even though I had gone for many years before being correctly diagnosed I had a very successful outcome from surgery.  I know that each patient is different so the EXPERIENCE of the surgeon is key.  Dr. Heffez has extensive experience with chiari malformation and has done more chiari surgeries than he can count.  He has an excellent reputaion in the chiari community.  Hope this gives you some peace of mind.  I had my son checked for chiari and had he needed surgery I would not have hesitated to take him to Dr. H.  In fact, I had Dr. H. look at his MRI'S!!  
I will put your son on my prayer list.    

Lana
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The doctor s name at DuPont in Delaware is Dr.Campbell. There was someone here before that had his son's surgery done by him and he said it was a very complicated surgery but the doctors were wonderful. I think if I remember correctly his name was Mik11.
There does seem to be a lot of people who like the other doctor mentioned very much. I would love to get a third opinion by him but it is just way to far for us to travel at this time. I was thinking about sending my daughter's MRI'S to him just to see what they had to say.
Good luck.
Chadry
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707040_tn?1337319979
My son was 15 (Jan 09) and had his surgery done by Heffez.  I researched quite a bit before we decided to go to him and we did have a good experience with him. Columbia St. Mary's was a great hospital and everyone was helpful, Heffez has a lot of experience with this surgery.

If you would like more information, send me a message and I will do what I can to help....


Sherri
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Hi Sherri,
I have been wondering how things are going.If you want would you please post an update on your son.
Chadry
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Thanks to everyone for replying to my post.
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Hi;

I have just been diagnosed after almost 10 years of symptoms that now all add up.  I need more information on Dr. Heffez, at least a contact number or email or address, anything.  It looks like he knows what he is doing.  I live in TN but I am willing to travel to find someone that know what they are doing.  I am already in a wheel chair and it would devastate me to lose the use of my arms as well.  Any help you can give me would be wonderful.

Thanks,
sharonp372
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620923_tn?1416285879


   Hi...I already posted a link to the Drs list on ur other thread...Dr Heffez's info should be on the list as Well as Dr Hamph from TN.

   Keep us posted on ur search for a Dr.

    "selma"
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