Just diagnosed with chiari malformation type 1 - 8mm

[karenlast]

Help! I was just diagnosed with chiari malformation Type 1 - 8 mm.  I live in Boston.  Can someone direct me to a specialist.  Will I likely need surgery if I just have headaches?

[selmaS]

The lack of support is from Drs that do not specialize in chiari....once u get to the right drs, it is like night and day the support u get......

It is sooooooo important to have the right dr, the right support system in place for all aspects of this condition.

  We here on the forum, can only share what we have been thru to help others avoid it, and  offer support of understanding what they r going thru.


   "selma"

[marfa1952]

My daughter has also been diagnosed recently with 8mm too!  We have not seen a neurologist yet, so maybe we can keep in tocuh and compare expereinces.  It is very disturbing to read the comments on the diagnosis and the lack o f support from docs.  Lets hope we have a better experience....

[Stephiec79]

Hi! I live in central, MA but travel to Boston to see my NS at Mass General! He is not a "specialist" per se, but I trust him whole heartedly. After receiving the grand chiari run around from multiple neurologists I was finally diagnosed by my NL at Mass Gen and referred to Dr. Coumans. He has performed MANY decompressions and is the camp that "it's not the size that matters but the symptoms".

Jean-Valery Coumans, MD
Massachusetts General Hospital
15 Parkman St.
Boston, MA 02114
617-726-3511

He is performing my PFD 6/27!

[zygy2]

In general I think if you have enough of a problem that is when you would be wanting surgery, as for if headaches are enough of a reason, that is a bit difficult!  Lots of people have headaches and lots of people have really bad headaches so you would want to be really certain that it could be the Chiari.  I choose to do my surgery because of headaches but it was the cough headaches that were out of control for me.  I could not laugh without serious head pain, it was caused by straining, bending over, stretching and pretty much anything at the end and was making me totally crazy.  It was VERY worth doing to get rid of those headaches.  It was easy for them to know that this particular headaches was caused by the Chiari.  I now have a leak in the patch and it caused a pseudomeningocele which appears to be causing a new headache for me and this headache is caused by neck movement... which also is making me crazy so I just scheduled surgery number two!  If you feel really certain that what you are trying to fix has a good chance to feel a bit better than it is probably worth thinking about!  Good luck, this is a crazy diagnosis and can be very hard to find people that really understand and listen to what you think is going on.  

[selmaS]

Hi and welcome to the Chiari forum.

Surgery is done only when ur condition is such that it is impacting ur overall health and well being....and u may learn u have a few more symptoms then u think u do right now....as the symptoms cycle and u may have chalked them off to being something else ....it is not easy to connect the dots and see what all is chiari related at first glance.

U do have a dr right there in Boston, but I will suggest u get opinions from a few drs to see who u r more comfortable with.....

  What ur drs should do next is check u for related conditions, and see how ur chiari is affecting u...does it obstruct CSF flow, do u have a syrinx, tethered cord, Ehlers-Danlos, sleep apnea,ICP,......head aches r but one issue we deal with.

We do have a list, and it is meant to aid u in ur research of drs, not as a referral........

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  "selma"