Newly diagnosed daughter.....need direction

[mommavamp]

HI,
My 23yr old daughter was diagnosed with Chiari type I with POTS, and Factor V Leiden Mutation in the last two weeks.  In addition she has struggled with ADD since childhood and beginning in adolescence depression.  The last 3-5 years depression worsened and the severe headaches began to slowly increase.  As additional symptoms of dizziness, shaky hands, intermittent blurred vision, nausea, random vomiting, IBS type symptoms and extreme fatigue with a life time of not being able to sleep .....all crept up she saw a neurologist after all the other docs kept throwing meds at her and treating her like it was all in her head! (ironic).  She also has put on a significant amount of weight during this time, not sure how much is due to SSRI's, depression, lack of sleep/no exercise and how much possibly the now found Chiari may contribute.  Her doctor told her yesterday she was never to get pregnant due to being too high risk with the Factor V Leiden to both her and to a baby due to clots.
I'm an adult Nurse Practitioner, so I've researched this a lot the last two weeks (never heard of Chiari before).    I want to reach out and find out what others have done to move forward.  We are waiting for a call back from a neurosurgeon at the Cleveland clinic and I am planning on taking her for an opinion at the Mayo Clinic and the Chiari Institute in Great Neck New York.   If anyone has any information on a good neurologist/surgeon who is well versed in Chiari and the additional cluster of diseases that seem to along with it I'd appreciate it.  Thank you  Lisa

[NurseGayle]

Hello I am new to this forum as well & am also an RN.  Seems many are on this site!  I and my 23 yr old daughter have chiari & experienced so many of the things you mentioned including sleeplessness & depression & weight gain etc.  It is a big diagnosis with chiari alone let alone the add'l dx. Most of those symptoms can come from ACM alone & depression is such a part of it.  You feel like crap all the time & have pain all the time.  Being 10 yrs post op, I am trying to "give back" from my experience as I did not after my surgeries. I went to a non chiari neuro for first surgery & it was nightmare, don't do it. Go to a chiari dr. I found the chiari institute in Great Neck NY & it was a God send. Dr B fixed the mess the original NS did & added a shunt. I did great for awhile. Then neck discs got so bac had to have the fusion at C2/3 & C4/5 four yrs ago at CI with Dr I. Went good for 2 yrs then migaines got bad & neck pain unbearable. Also lots of arm/hand & extremity probs. Just went back & he said its a mess & need to redo it. Don't want to. Have to. Am down at least 3-4 days a week with migraines. Live 10 hrs away from CI (in Ohio) so looking to check into Cleveland Clinic as a closer possibility. Not sure where you live but would highly recommend Dr Bolognese at Chiari Institute in NY. He saved my life & the quality of my life. They told me prior to all this it had to be psych problem. That is such BS, I am not an idiot. I know when my body is failing me. Good luck & let me know how it goes.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur DD is dealing with so many issues all at once, as if one alone was not enuff.

The getting meds thrown at her and made to feel it was all in her head when it was is a common thread we all share here.....sad really.

Chiari is not well known as it is not really taught in med schools I believe they do a 5 min intro and keep going...with the advent of MRI's being used to DX issues like HA's it is being found more and more, but that does not tell the Drs what to think of it....or to look for related conditions....

U have 2 places I know have good Drs....I am not familiar with the Chiari Drs at Mayo so I can not say but  I know people that went to CC and I myself went to TCI in Great Neck....

Getting several opinions is the best way to go, so ur DD and urself can choose the Dr u feel most comfortable with....in the mean time educate urself so u will know which is the right Dr for her.

Know u r not alone <3