Need a CHIARI specialistin MA - second time around

[trixie10271]

i was diagnosed in 2011, had decompression surgery in 2013, and 14 months later started experiencing head pain, increasingly the headaches are back in full force...MRI in march 2015...csf moving fine but why do i still have this pain?NS schedules follow up MRI dec 2015...result herniation blowckin csf and syrinx has formed again!!!!! I am nervous because NS says need another more delicate surgery including shaving part of brain. I am seeing him this week to ask questions since I was in shock when he told me this and I saw the syrinx again...pain is terrible, numbness in hands again. I never knew the severity of this condition. Thought Id have surgery and be good. NEVER thought another surgery would be needed nor did I know that this is a chronic condition with no cure!

I want another opinion and may see someone else for my surgery. I am not comfortable with how things are. I ha e heard of Dr. HEilman at Tufts and am looking into getting in to see him.

Does anyone have any info on him good or bad and are there any others in the area that are SPECIALISTS for CM who are good???

Desperately Seeking a Good CM Surgeon

[selmaS]

  Sorry I forgot my privacy settings....you need to accept a friend request b4 you can PM me...I sent you one....

I did not have a syrinx, but had a CSF obstruction and a partically retroflexed odontoid so to help prevent the syrinx and the symptoms I had, surgery was done in May of '09.

I do have related conditions that continue to affect me from time to time...but I am so much better post op.

[KerriC1]

i agree with Selma about the brain shaving part.... That sounds scary and confusing.  I hope you can ask questions regarding that.

I'm not sure if I have a syrinx or not, didn't have one pre op but it makes me wonder with all these strange symptoms if I may have developed one post op. I had my surgery in July and things have slowly increased to this point. I didn't get any answers at the hospital at all. No NL or NS even came in the room to examine me. So they just sent me home saying I needed to follow up with neurology and psychology. That seems to be the answer for everything when they can't think of anything.....

[trixie10271]

The previous message should read....Mass General will not see me.....

[trixie10271]

I tried to pm you bit it said i can't pm this user.

A big problem.is masshenetalwill not see me because their policy is to refer you back tho the original dr if you have already had decompression. That's bs. I can not even get in for an.opinion so the only dr on the list is one im in the process of going to see. Waiting on med records...

Thank god for these forums because no one understands what this is like. My hand is numb right now as i hold my phone.

What did they say when you went to the hospital after your body went numb?  So you babe a syrinx too? Did you have decompression already?

[selmaS]

  Hi ...I did reply to another post I saw from you......I did not see you mention as you have above they want to "shave part of the brain" ????

Not sure who did your first surgery and please do not say on the public forum....but you can send me a PM (private message) as we do not want to say  for several reasons....

But it sounds like during the first surgery too much bone was removed and caused brain slump also known as cerebral ptosis....and I would deff want a second opinion b4 I would let the same Dr perform another surgery.

We do have a list of Drs for you to use in researching Drs....the list is not a referral nor an endorsement for those listed....

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA

[KerriC1]

I understand your situation more or less. It's such a crazy thing to go through a surgery of this nature hoping to feel better and regain some quality of life only to be struck back down.

I am almost 5 and a half months post op and have been having ongoing issues that only appear to be getting worse and stranger. My NS doesn't seem to want to help so after getting nowhere with him, I made an appointment with a new one. My appointment is January 13, and it feels like an eternity away because I have no clue what's going on.

I'm so sorry you have to go through this again, but hopefully this one will help the pain and problems chiari has caused. I'm not familiar with the dr you mentioned but maybe someone else here is and can help you with your search.

I too have numbness in hands and feet and about 3 weeks ago was taken by ambulance to the hospital because my whole body went numb and I couldn't feel my chest expanding to breath. I honestly thought I was dying. This is such an unpredictable and scary condition to live with and it certainly makes you hyper aware of every symptom.

Good luck and I hope you find some relief!