Dr. In Mass.

[Jo2215]

Hi, I am new to this forum.  I just went to Dr. For dizziness and back pain.  MRI showed 5.5 cm syrinx on mid thoracic spine which needs further evaluation.  Can anyone suggest a good Chiari/ syrinx specialist in Massachusetts? Thanks.

[Jo2215]

Had a brain mri. Only note made  was that of multi focal irregularity in right non dominant vertebral artery.  I don't know the significance of that.  Hopefully the doctor's visit will help clarify.  Thanks for your input.

[selmaS]

Tethered Cord does not always show on a MRI and in that instance would be referred to as Oculta tethered cord...oculta meaning hidden.If you have not had a lumbar spine MRI they could not totally rule it out....but a brain MRI could indicate it if the brain stem is elongated.

[Jo2215]

I went to the Spine Center today, and the doctor said I could have had the syrinx since birth.  He didn't seem too concerned, but having read many of the comments here, I was prepared (thank you all!), and asked for a  NS referral to Dr. Coumanns ( thank you, Selma, for the list), so I'll be calling his office on Monday.  Today's doctor did not mention a tethered cord, but I'll make sure Dr. Coumanns sees all tests and images.  You are educating me well!  Thank you, again!

[selmaS]

  I too was told I have mild scoliosis....but I also have been DX'd with tethered cord....do you have that as well?

[Jo2215]

Oops. Spell check put in Emmett.  I wrote Emme.

[Jo2215]

Thanks so much, Emmett.  I'll keep in touch.  I'm sending feel better prayers to you.  

[Emme80]

And keep us updated!

[Emme80]

I was reading your story and my heart sunk that you have this going on & then dropped in the parking garage & it caused so much damage! Then I saw my name(my family always called me a little firecracker and the nickname developed b/c an M-80 is apparently a little firecracker, thus, Emme/ Emme80 ;) )
I know my story reads so up and down-I guess that's what Chiari is as it is, let alone the up and down from our doctors; for which I'm getting a run around after the surgery (almost to 6th week post-op! Still with this brick in the back of my head making everything tears everyday)
Chiari is sooo tough. BUT,  I saw a quote:
"Chiari is tough but I am tougher". I TRY to tell myself that. At this point, I feel unsure about that but I'll keep trying. I will pray for your upcoming appointments this Friday, that you get some answers or directions! I'm wondering if I do have some type of EDS, as I've been reading, there's been a lot that rings true-but I'll let my doctors figure it out-yet I do believe I need to bring this to their forefront attentions. That also might be complicating my situation.
Please do take care of your still healing self!

[Jo2215]

Thank you again.  I am 64 years old.  Before a few months ago, I was a young, healthy 64.  (Or so I thought). I had occasional back pain and was dx with scoliosis (told no problem) at 17.  I have not been dx with Chiari or anything else yet.  I had MRI last Friday, and have appt. at MGH Spine Center with a physiatrist this Friday.  Headaches, weakness, nausea, back pain feeling generally miserable for the past two months.  I'm a teacher, but have been unable to go back to school.  I feel such compassion for Emma80 and all of you who suffer.  I'm trying to be positive, but this is really hard.  I pray for all of us.

[selmaS]

  I am happy you were able to gain info just in reading this site....

Not sure the syrinx interacted with your meds....but if you have EDS in addition to Chiari..( related condition many of us have) that could have caused an issue with meds....

Get copies of ALL testing you have had to date...including blood labs etc....and research Drs to locate a true Chiari specialist...as they are the best for Syringomyelia (syrinx) too.

[Jo2215]

Thank you so much for your quick response.  I have been reading the comments here for the past few weeks while I have been shaking in my boots going through many tests.  Initially, I went to the doctor for back pain and dizziness.  My doctor wasn't in, so the doc covering sent me to ER for high bp.  They did scans and mri, and saw the syrinx.  i was in ER for 10 hours. It was busy.  The medication they gave me for pain and bp must have reacted unusually because syrinx??  I fainted in the parking garage.  Back to ER.  Fractured jaw, ear one, foot, concussion.  I am still recovering now 9 weeks later..still dizziness, weakness on right side.  I'm trying to sort all these symptoms out right now.  Selma, you are such a source of wisdom and kind support to others.  I truly appreciate your guidance and knowledge.  Thank you.

[selmaS]

  Hi and welcome to the Chiari forum.

We can offer you some names for you to research as we do not refer or endorse Drs....here are a few names that other members have been to, treated by and liked.....

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