They say its a rare form?

[Desertdawn29]

I was DXed this past winter with Chiari Zero Malformation. My nuero just called me today saying that she cant help me because even though I have CSF blockage, that she physically cant see the blockage. Ive been sick for years bouncing from one doc to another..I also have FibroM..so am in alot of pain in my joints and am on medication. Im 35.. and began getting sick after a bought of Hep A (ecoli infection). It started out as restless leg symptoms..then over last 6 years progressed to all my joints..the headaches began shortly after and when I was injured on a trampoline on my posterior neck. I have no herniations of any sort..now she wants me to go back to a nuerologist. I feel like the buck is being passed once again..how long do I try getting this fixed?..Im exausted
DDT

[youngwife]

My advice:

Find a real Chiari Expert.  There are several across the country, and they are well worth the effort to send them films or go see them.

www.asap.org has tons of information.

If you'd like more information, I'll be happy to help you.

Rebecca

[selmaS]

First know you are not the only one being brushed off or passed off.....so we all that post here understand. Everyone here will also tell you that most NS can not help chiari sufferers, so you need to find a dr that specializes. Such as the chiari institute  in NY.It all depends on where you live, but I found most likly you will need to travel. Try the ASAP site there is a list of drs there.And try a couple before you settle on one!
I have been to two NS and am finally going to NY.

Good luck and Godspeed
"selma"

[Desertdawn29]

Thank you for your suggestions..What the Doc now is saying that even though I have all the Chiari symptoms I dont have chiari now and no one knows what I have..But I think if it looks like a Duck and walks like a Duck.....ya know?
I cant find the nuero who takes my insurance either..its very exausting and now that the headach is back constantly (differing in degree of pain) I worry I will slip back to foggy brain and fatigue being worse. Since the spinal tap Ive had more drop attackes but less headaches..actually NONE..doesnt that mean anything?
I will keep trying and praying for us all.
DDT

[Desertdawn29]

Oh I meant to say the leading Chiari Expertin the United states was consulted..he agreed with her I am not a surgical candidate for Chiari decompression..which leads her to believe I dont have it or a new rare form of it. I remember her telling me trauma could cause a scar in the brain and could be the cause for blockage..doesnt that seem more plausable then a rare forem or another rare condition?
DDT

[rozia]

you dont need a Neruologist . You have been diax now you need a Neurosurgeon . where do you live there are experts all over the US .

[selmaS]

I understand how you feel- the first NS I saw said I did not have chiari and the second one said I did, but could not help me.Not all NS are equipped to help. You need to find one that specializes in chiari.I am going to try the Chiari Institute in NY.
I did hear about Chiari zero at the ASAp conference in July. I do not agree with the use of a measured guide to determine wether or not you are symptomatic-I believe the patient can do that.The drs always say everyone is different, but choose to use a system to try and see if we should have symptoms or how baad the symptoms are.....to me that's an oxy moron.
Keep looking- ASAP site has a link to list of drs.....start here, but be very careful.
Get a cine MRI if you didn't already.-flow study

Godspeed
"selma"

[Desertdawn29]

I have had a flow study and have only one flow pathway working, the other 2 are blocked but nothing shows whats blocking. I agree about the being symptamatic..I mean hat else do I have to do to prove to them. I have found a neuro who will take me Oct 31st..so I hope something comes of this..all the doctors are intriguedby my case..but no one brave enough to touch fixing it..I will be looking at the ASAP site but for now I have to follow up with the neuro in case I hae something else(which I dobt)
Thanks so much for the advice.
DDT

[youngwife]

I am very curious whom this "Leading Chiari Expert" in the US is??  Could you share their name?

[Desertdawn29]

Well he was out of the country for over a month, hence the long wait. His name is Dr.Frimm. My nueroS was waiting for his consult..and she said he is the leading Chiari expert in the US..I believe from New york(I could be wrong).