Something New And Strang Happeing

[MrsCJNall]

I am a 39 yr old female.  Back in January I was diagnosed with Chiari Malformation I, with a 9mm herniation... I have gone almost a year straight with daily headaches, that mostly stay at about a level 4-5 with medications (now at 100 mg topamax and 50 mg amitriptoline daily) but other days the headaches can be worse, never are they less.  I recently discovered an indintation on the top left side of my head, and I am missing hair in it.  It is about the size of a nickle, maybe a little bigger.  It is very sensitive all the time, feels like I have had my hair up or pulled back.  I went to see my neurologist today and she said that she thought it was something dermotiolgical, so I guess I will be going to see a dermotologist, but I am still a bit on the worried side, because it just doesn't seem like a normal answer, not that I want it to be anything serious.....  I seems that I come across a Iot of "lack of answers that don't make much since to me" since I was diagnosed with Chiari.  Most of what I have learned I have learned on the internet and not thru my Doctor, don't get me wrong I do love my Neorologust, I just don't think she is the best person I can be seeing at the moment for the Chiari, and I'm not sure where to go from here with it, because she is working with me and my insurance.  

[taylapj]

I tend to agree with givenstrenght I suffer from a small bald tender patch right at the base of my skull, that can be so sore to touch, stress is a factor and side effect of medication.  Hair loss isn't a symptom of chiari but with everything our bodies are going through it's no wonder we suffer with stress symptoms. My neurosurgeon said it's alepicia. But theres nothing you can really do medically for a little bit. X

[tkilburn]

I was just put on topamax and was warned that hair loss is a side effect. It really could be just that. I'm sorry your NL wasn't anymore helpful. I would try and find another one who is more knowledgeable with chiari. Have you thought at all about surgery? I'm just curious as I was just diagnosed last week and mine were at 9 mm too. And my NL is recommending surgery.

[selmaS]

Hi and welcome to the chiari forum.

It is very important to have a NL and a NS that understand chiari...we do have a list that u should use to research drs .
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

This list is not meant as a referral, but as a starting point, the drs names r those from members who were treated by these drs and liked them,.....u need to find the right dr for u.

May I ask, have u been checked for a CSF blockage?...a syrinx?......

"selma"

[Givenstrength]

Search Alopecia areata and see if this sounds like what is happening.? Hope you get some answers