I need suggestions

[kate8009]

So I'll try to keep this short as possible. I'm having Dr issues. After 21 years of wondering what was wrong with me I've been diagnosed with chair. I get migraines at least twice a week and experience auras about twice a day. When those happen I mix up words and forget things
, I walked home from work once it took about two hours because I got so confused and I forget the simplest things like my address or phone numbers. I also have DDD but was diagnosed with that when I was 13. I felt like the diagnosis would help make things better and things could change but my family doctor has said that there's nothing that can be done and I'll have to learn to adapt to these symptoms.
I can't see a neurosurgeon without a referral from her and I can't get a new doctor because we don't have any accepting patients where I live. I don't know what I can do but I've been adapting to these symptoms all my life and don't want to settle anymore. Any suggestions would be helpful has anyone had to deal with this before?  Thanks so much

[xmelax35]

Does the referral have to come from your primary doctor? If it doesn't and can come from any doctor, then do you have any other type of doctors you see? If so maybe they can write you a referral? For instance if it were not for a rheumatologist I would never been able to see the cardiologist and if it were not for him I would not be at the neurosurgeon's office i am seeing now.  Hope it all works out for you and you can finally get to a good neurosurgeon.

[thieb9]

I went through the same thing. I am having surgery on Thursday, and my pcp still thinks that chiari and my syrinx aren't causing my issues. I had to pay out of my pocket 2 times for consults with NS because the ones my dr was referring me to were ones that had no idea. Hang in there! Its a long journey but hopefully you will get some answers!

[selmaS]

http://www.medhelp.org/posts/Chiari-Malformation/CHIARI-DRS-LIST-CANADA/show/1270605

[kate8009]

Yeah, I'm in Ontario, Canada.

[*Stormy*]

Hello and Welcome!

Burdzmom...you are 100% right!!

We have all had the Dr battle one time or another and  you learn really quickly that you have to advocate for yourself. It is really sad and awful being sick like we are and then having to fight for proper care....but the benefits that you will see from you persistence are worth it!

May I ask where you live? From the sounds of it it must be the UK or Canada. I live in Canada and we have the same referral process that you mentioned. When I was going through the dx process I got absolutely nowhere with a NL (neurologist). Luckily, I came in contact with an excellent NS who offered to see me. So I went to my GP and I just said, this NS will see me and I want a referral. It was the best thing I ever did, I got my dx and surgery within 3 months.

So my advice to you is to start researching Chiari specialist RIGHT NOW!! Depending on where you live, there may a Dr on our specialist thread:
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
This is the one for the US...if you are in Canada we have a list too, let me know and I can find it for you.

Once you find a NS, go to your GP and tell them that you have done some research and that the most qualified Dr to treat it is a NS...it is much more their field than a NL. Then give them the name of the Dr you want to see and insist that they refer you. I think it would be medically negligent if they didn't ESPECIALLY since you already have a Chiari dx.

I know how hard it is to really push for yourself but it will be the best thing you can do for yourself!! Remember this forum is here to give you support as you go!

Carolyn

[selmaS]

Hi and welcome to the chiari forum.

Since u need a referral for ur insurance...try this another way...can u request copies of ur MRI that show chiari?...send it off to a chiari dr and have that dr contact ur PCP???

If he gets a chiari dr to explain the unknown to him he may give u that referral.Use the list of drs to research to find one that is right for u.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

So glad to have u join our little family here, not happy for the reasons that brought u tho,.

"selma"

[burdzmom]

well.......go to your primary and push how severe your migraines such are. If you are complaining of severe pain and are uncomfortaable with treatment, you have the right to be referred to a specialist. NO DOCTOR can deny you treatment. IF you tell your primary you would like to see a neuro then they have to refer you considering your ongoing symptoms. Education is power when it comes to this stuff.  Arm yourself with knowledge and get what your body is telling you it needs.

Am i right everyone?!?!? . . . . .