Saw neurosurgeon for Mikey

[mikeysmom1995]

Hi all,

MIkey went to see the neurosurgeon, and he said he definitely has Chiari. He wants us to come back in 3months time and have another MRI to check the flow of the spinal fluid.
We were telling him about some of the symptoms Mikey has been experiencing and he really didn't seem too concerned about most, like extreme lack of energy, headaches that occur in the front and back of his head, but the doc was only concerned about the ones in the back of his head, the shoulder pain, the confusion he seems to have, memory problems, shoulder pain because it wasn't constant, or because his fingers were not numb all the time, just sometimes.
This boy went from being extremely organized  in every aspect of his life and completely picky about all in his room for as long as we can remember to complete chaos. He is having trouble keeping all of his school stuff organized. Just totally not himself.
Now we need to wait for 3 mo. to find out more. I guess on the upside it gives us time to look for a Chiari specialist. We will probably have to travel, but will do what we have to in order to get the best care.
I have read that Devon had surgery this week, I will say many prayers.
Please forqive me for not navigating on the site so well, I am very technically challenged.

All My best to everyone,

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[mikeysmom1995]

Hello,

I am so sorry to hear that your daughter needs to have surgery. What is the size of her herniation? Has she had a CINE MRI to check for spinal fluid blockage? Is your daughter having any symptoms?
There is a thread on this site that lists doctors, maybe you can find a Mayo clinic doc on there. As all will tell you on this site, it is very important to get a true Chiari specialist, as all neurosurgeons are not true Chiari specialist.
I am sorry to that you had to seek out this site, but all here are kind and compassionate, and have a lot of good advice to give as most have  been through so much.
I am a parent of a boy that we are waiting on  a specialist confirmation of Chiari as he has  alot of the symptoms. I feel a lot of love from all here, and this site has gotten me through many bad  days filled with worry.
Feel free to ask anything, I am sure someone will be able to answer.
Many prayers to you and your daughter and family
Barb:)

[bharvel]

My daughter needs decompression surgery.  Is the Mayo Clinic in Minn. a good place to go?  Do you know if they remove the lower part of  the tonsils?  Thanks.

[selmaS]

HI Barb....a CINE MRI or flow study is to determine if Mikey has a CSF blockage. It is like a normal MRI but with a clip oe leeds used to monitor the heart beat.

It is believed with a blockage the CSF flows only with the beat of the heart....and the study watched flow in real time...so more like a movie.


Deff stress can make any health condition feel worse...no diff for chiari symproms.

Dr Di...I believe is in Cleveland.....

Typical MRI's for chiari r- Brain w/wo contrast.......cervical spine MRI.....thoracic and lumbar spine MRI's and CINE MRI.

Hope this is helpful.

U also have a Happy and safe Halloween : )

"selma"

[mikeysmom1995]

Thank you for all of your concern. I am overwhelmed by your kindness. Mikey measured 8mm. Could someone tell me what a CINE study is?  Also, does anyone feel that stress can make your symptoms worse? Also, Mikey has not had a cervical spine MRI done, and I don't think that the dr has it ordered when he goes in 3mo, just of his brain. Is this something that I shoud request.  I think that I read that somebody has seen a Chiari specialist at the cleveland clinic which is only about 4hrs from here. Does anyone know the name of the Dr. in cleveland?  
Happy Halloween Everybody!!!!!   Boooooo!!!!!

Mikeysmom1995

Barb :)

[dpulum]

i agree, I wouldn't wait the 3 months.  I had been going through the process myself of having to wait for months between neuro appointments feeling horrible in between, only to get to the next appt. each time and have nothing happen.  I think you have to find a doctor who specializes in CM and get your son to them.  I'm getting ready to have the decompression surgery done and my symptoms are not constant, some days are worse than others, but it definitely affects my quality of life all of the time.

tina

[pdxmomof3boys]

Please don't give up, and CERTAINLY don't wait 3 months! Some doctors really don't take it seriously. In fact, the 3 in my FAMILY don't believe it's something serious, but rather something that lots of people have and just deal with because there are no symptoms. They are my FAMILY! Just find someone who will listen. My ns said it is up to me when I want to do it -- now or next year, depending on my symptoms. We are getting an MRI of my spine and a CINE study tomorrow. I will know by 11/10 what I'm dealing with. I found the RIGHT DOCTOR, FINALLY. Keep trying. Kids don't change that quickly for no reason. Sounds like you have a pretty amazing young man :)

[n40066]

i'm very happy to hear that you are looking for a chiari specialist.  your son needs this!!!  did he say how much his herniation is?  that can def. impact which specialist will be willing to see him.  i will keep you all in my prayers...

[rod44]

I don’t know if you DS has had an MRI of the cervical area done, this would be important to rule out Syrinx and other related conditions. Your NS doesn’t seem to be taking this too seriously considering what your DS is going through.

I hope you find some answers soon and your son dose not suffer unnecessarily because of the lack of compassion of a doctor.

Ray  

[selmaS]

Oh well I see u have found how to start a thread..I posted to this on the other thread, but am sooooooo happy to hear from u and get an update on Mikey.

If u need help locating our chairi drs thread please let me know.

Good luck
"selma"