Chiari specialist in Boston

[Dicon]

Does anybody know of a good chiari specialist in the Boston area that listens and can think outside of the box?  I am definitely not a "textbook" case but truly believe I have a Chiari 0 or at least definite crowding that is causing tremendous neurological disability.  I also have an unfused arch of c-1 and retroflexed odontoid that I swear pokes into my brainstem and have had a PT assess me as having a craniocervical instability. It literally feels like my head is gonna fall off from my spine!  I have seen many specialists and all blow me off saying I'm fine.  Why would I have such debilitating sx and answer YES to almost every sx on a chiari checklist of sx?  I am desperate for help.  Any input would be much appreciated!

[selmaS]

  Hi and welcome to the Chiari forum.

Once a DX for Chiari is found, more testing should be done to determine everything that may be going on. It is possible to have disk issues that can cause similar symptoms as is for him to have a related condition like Syringomyelia, ICP, POTS, tethered cord, and ehlers-danlos, sleep apnea...all of these should be ruled out.

Issues with hands, fingers, legs etc is typical of Chiarians....may I ask what other symptoms he may have had...symptoms can come and go as they cycle so some go and never come back so u may have to think back as to what else could fit under this DX.....

  We do have a list of Drs that I will bump up for u to use to research Drs as the list is not a referral nor an endorsement for those listed on it.

[keken]

my husband has chari malfromation type 1 and he is in a lot of pain on the right side from his neck to his right arms and fingers..mri shows that...he is currently in boston is there any thing that could be done ...he cannot use his right hand to do any work

[Dicon]

Thanks for your input.  So did you end up having CM after Dr Heilman pushed it all back to you?  who ended up diagnosing and doing the surgery?  I've head such amazing things about him, but I was quite shocked when he sent stuff back.  I did send him my newest brain MRI with another letter and that's when his asst called to schedule me an apt so I have to believe he now sees something!  I don't see him until the end of Sept though.  I heard he was so caring etc.... not your experience? Seems so abrupt to just blow you off once he feels he's done. So weird.
Did you see all the other guys you mentioned? Were any of them better?  

[sandy629]

  another thing about dr. heilman is when he is done with you he is done. he didn't request your mri's ?

[sandy629]

  there is dr. wm. curry at mass general  there is a dr. butler, and there is a dr katz at boston medical

[sandy629]

  he did the same thing to me  i have already had the surgery, i gave him a list of symptoms and he pushed it back at me and said they could be anything

[Jleat]

Hello all, I am a 41 year old mother of 4. I have a CM1, 6mm on the left and 8mm on the right.  I have been dealing with symptoms for about 20 years. My first symptoms being migraines and memory lapses, when I was 21 they said they couldn't find anything.  10 years later after my 4th child I had another MRI and they said I had a mild Chiari malformation (compared to my last they were the same), but they did not think it had anything to do with my headaches, dizziness, memory lapse, and pain/tingling in my hands and arms.  I have a nephew who has CM1 (22mm), required surgery at age 3.  I went to his Dr's at the Chiari Institute in Long Island N.Y. Dr Bolonese and Dr. Koula are wonderful. They explained that infact CM1 in responsible for my issues. I have not done the surgery yet. I am trying med's first.  I have been on Topamax for 4months and my headaches are more than cut in half and I have not had a migraine since I began taking Topamox.  Just an experience I wanted to share if it helps.

[Dicon]

The local radiologist's report claims my brain MRI is normal and no chiari. I a the one that am relentless and sent the MRI to Dr Heilman to view as I feel there is a ton of crowding so although I'm not "textbook" I think there is an issue.  I also have a retroflexed odontoid, incomplete c-1 arch and my PT assessmed me to have apical and alar ligament laxity causing instability. Nobody in NH can seem to grasp all of this.  Every day it feels like my head is falling off my spine.  I definitely feel unstable and it feels like a bone pokes into my brain then I get all the debilitating neuro sx. Something has to be wrong!

[selmaS]

  Well it all depends on what was seen on the MRI...do u have a copy of the report? That may offer some insight.

I would hope, as I know u feel the same he is not just seeing u to brush u off, and that he may see that he might be able to offer u some help, so decided to see u, that was good of u to send the MRI in to him.

Keep us posted on how it goes ...Good Luck : )

[Dicon]

Despite being told that he felt no need to see me, after my NL ordered a new brain MRi, I decided to write another letter to Dr Heilman at Tufts and send the new brain MRI. I got a msg from his asst the other day with an apt. date so I can only pray that it means that he sees something!!!!  I can't imagine he'd be seeing me just to appease me.  What can I expect from my apt.?  I've only been to local Drs...have never dealt with Drs in Boston
Thanks
Di

[selmaS]

  Not sure when u checked with TCI, but they now do take ins...and u may want to talk with their billing dept if u haven't and also take to ur ins to allow u to go...sometimes they will allow it as it is a specialist u need.

As for getting fixed- there really is no such thing....not to be a debbie downer, but this is y so many write negative things about surgery, they expect to be fixed, and u can not expect that...surgery is not a cure just a means to restore CSF flow and slow progression....we have no idea how our body will respond to surgery and some of us do unfortunately get worse.

Chiari is life altering....I am productive, but not the same way I was b4....we have to be open to the possible change and not expect to go back to something that may not happen...if it does, wonderful...but if not, not a surprise....

[Dicon]

Yeah I definitely feel like nobody in my area has a clue about this and don't believe me at all.  I desperately wish I could go to TCI but they don't take my insurance and I have no $ to pay out of pocket.  I haven't been able to work in over a year which has ruined us big time. I'm sure many of you are in the same shoes.... it's a vicious catch 22 - the help we need is so far away insurance doesn't cover it but if we could just get to the right person and get fixed we could move on and be productive again.  I'm at a loss for what to do...just know I can't stay this way!

[Viva001]

I was Dx'd w/Chiari 0, and it was difficult to find information on it.  Fortunately I have a terrific specialist (in NC) who I trusted, despite being uncomfortable with the lack of research.  I also realized that I couldn't stand suffering anymore, even though the 2nd & 3rd opinions warned me against having surgery.

It may be that those of us with Chiari 0 have better outcomes, because the surgery is less complicated,  but i don't know that for a fact.

[selmaS]

  I hate to say it but u may have to travel to get to a Dr that knows what u r going thru and can help u....It is diff enuff to find a Dr when u have a herniation that is on the larger side (even tho I do not feel that is the right criteria) they still find reasons to ignore us....so, falling under the generalize scale they tend to use I would say u need to go outside ur comfort zone of being close to home....

Not all chiari specialists, treat chiari 0......

[Dicon]

I tried to get an apt w/ Dr Heilman - wrote a complete letter explaining everything and all I had for imaging was cervical CTs and MRI and a brain scan from 200.  I got a msg back telling me he didn't see anything at all wrong and feels no need to see me  I can't believe it!  With a complete explanation of everything I'm experiencing symptoms-wise you'd think he would've given me a chance to meet him.  I am constantly at a dead end :(

[t2b123]

Dr. Heilman at tufts is incredible!

[selmaS]

  EDS is an connective tissue condition that affects the collagen that holds the joints together so many with EDS r hyper mobile.

Here is a link that can help with part of the dxing of EDS....it is just one type and not all with EDS will have hypermobility, but it sounds like u already do have some....check it out and look for a rheumatoid Dr that specializes in EDS.
http://www.reumatologia-dr-bravo.cl/para%20medicos/crit%20y%20diag/DIAGCRITJHS.htm

[Dicon]

No, I've never been tested for that.  What do they do to test for it?  I only started having the feeling of upper cervical instability after a chiropractor cranked my neck 3x/wk for 9 mos.  The PT I went to is certified in spinal stabilization. When I told him my story he said that my cervical joint is hypermobile so nobody ever should've been manipulating my neck, nevermind that frequently. He said it easily would've caused soft tissue/ligament damage. When he evaluated me he said that the apical and alar ligaments, which attach to the odontoid of c2 and the occipital bone, are lax.  He feels this is causing the instability but none of the Drs I've seen will listen to him ("He's JUST a PT") or me (I'm only the pt who knows how I feel!!!)
Anyway...I will check out the list of Drs. I'm just desperateto find someone that will be as relentless as I am in finding out what is wrong!
Thank you!  Glad I found you guys :)

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, do u know were u tested for Ehlers-Danlos as well? Many times that is y we have the instability issue...??

We do have a list of Drs on here that was compiled by the members of Drs that they went to and liked , not all r true Chiari specialists, the list is just a means to help u start to research Drs...it is not a referral.

I will bump the list up, but u can locate it by going to the Health Pages, or using the search this community feature.