This is new to all in my family I will take any advice good or bad
 

Hi All,

I am from the RSD family but I am posting here today because my 15 daughter was diagnosed today with Chiari Malformation. We are at the beginning of this journey.

She will be seeing a Peds. neuro. doctor who specializes in all headache and spine issues at NY Pres. Cornell on the 24th, I am also going to try and get her into the The Chirari Institute in Great Neck, Long Island, NY, they are suppose to be the best. .

I would greatly appreciate any input, suggestions, good or bad.

If anyone has info. on any doctors again good or bad please inform me. I want my daughter to get the best possible care.

My daughter is a great child and it is killing myself and my husband that she has to go through this so please any input at all would help.

Thank you,

Gabbycakes

Gabbys Princess
 

Being on my fourth surgery, please,please do your homework and make them explain anything to you that you don't understand, because the doctors will rush you out of their office and your poor daughter will still be in pain. Make sure you keep copies of her MRI's before and after with Gadolinium, it will help the doctors find the problems in the nerves. Get 2nd and third opinions before any surgery and inquire about shunts just in case, I dont know the severity of her chiari but I'm assuming it's a Chiari I Malf. and there is probably a Syrinx involved,that causes pressure on the nerves as well as it could cause some damage if not corrected early enough. Some good news though is that you caught it while she was young, and the results are usually good for kids, for example my first surgery in 2002 my Goddaughter had the same surgery she recovered in 3 weeks totally and I was barely moving after one Month, Please let me know if this helped and I hope the best for you and your family.

Thank you for the advise I truly appreciate it.....

Gabbycakes....

Great News...
 

My Daughter had her appt. yesterday at NYPres Cornell and her Chiari is very slight, an MRI will be done to confirm the degree of her condition. She went back to school today with no headache.

Thanks for the reply.

Gabbycakes.

That is good news!!! I wish you all the best for you and your family...stay in touch

Thank so much we are still headache free and she is feeling much better.

Her MRI is Nov 30th so we will know for sure after that.

Thanks again..

Gabbycakes

Make sure they are checking MRIs of brain, thoracic, and lumbar to check on progress of syringomyelia.

I would recommend getting a CSF study done.

Chiari's is defined by the Cerebellar tonsils descending into the foramen magnum by however many mm... but the symptoms seem to depend more on the circulation of the Cerebral Spinal fluid than the actual tonsils, themselves. Some people have a 1mm escopia with many symptoms, and there are others with 7-9mm escopia with light symptoms.

*edit* Hope this helps.

Good luck to your family. This is a hard thing to have to hear, but keep your chin up, stay strong, and you will get through it. :hug:

My herniation was 8 mm,,, Had the surgery but never had the headaches,, worst thing I could have done,, now wondering if I dont have a syrinx,, causing all the arm pain,, but Neuros say theres none there,, so who do you believe, and will it show up on a regular MRI without Glad

Gabby,
I can assure you from my research that the doctors at GreatNeck are the best in the country. Yes, do your homework. Also, before surgery if possible check into natural alternatives as there is research being done. I was diagnosed in 2006 and did have surgery by Dr. Barth Green -also one of the best- however the doctors that youare talking with specialize in continued followup. it is WHAT they do. Relax. What doctor are you consulting withat this point?
~WyndyHopes~