Frustrated wuth neuro situation- need advice

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Post  sailingmuffin on Wed Aug 15, 2012 4:31 pm

Hi All,

Well, I am a little frustrated with my current neurologist situation.

The neuro that I saw for several years in the past is returning to UAB. I had hoped that I would be able to see him again. However, it turns out that he is mainly doing procedures and is not following patients, is only part time, and therefore can't help me. I spoke to his secretary and asked if he would be willing to recommend someone or to possibly see me for a one time consult. Unfortunately, he won't see me. She did say he would call if he thought of someone who could help or if he changed the way he practices- apparently, he is directting a research study and can't help me.

My current neuro is cutting way back on hours and on patients. I haven't been at all happy with his PA, whom I have seen twice, when I was scheduled to see him. The last time I saw her, she informed me that I should wear a helmet due to the number of times I faint and then said I fainted because "I wasn't doing enough with my life. " I was supposed to be seen in May, and asked to be seen by the neuro instead of the PA, and that appointment still needs to be scheduled. I will call again. He is pretty much the only headache guy in town. I really need a headache specialist to help with the migraines.

I am not sure what to think anymore. I had some hope when I heard that my old neuro was back and then was able to schedule an appointment for the end of august. But, I really felt kind of lost today when I got the call and was told he wouldn't see me. I know that no one person can fix this, but I do believe in having some competant people around to help with this. My PCP and pain drs are good, as is the current cardiologist an the neuro is ok, but I guess I was just hoping for some help. I suppose the only thing to do is to keep going and see if there is a neuro who might be willing to take me on, or at least do a consult or certainly when the current one retires.

I really hate having to go through this again.

Thanks for letting me v ent and I would love any idea.
Pain free daysm
sailing
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Post  Migrainegirl on Wed Aug 15, 2012 7:26 pm

SM, yes that is very frustrating. Unfortunately your situation is pretty unique. Any chance of trying nuerologists at another city not too far away? It would obviously involve the challenge of travel, but you might be able to take a bus, or get a family member or friend to drive you.
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Post  Kate on Thu Aug 16, 2012 9:39 am

The Neuro I saw wasn't very good so I tried to get into the best one around town. I had my records sent and basically they told me that there was nothing that they can do for me that has already been done. I personaly feel like that he just didn't want to deal with my case. At that point I was pretty much done with Drs concerning my migraines.

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Post  Seaine on Thu Aug 16, 2012 9:42 am

I also live in a small town and there are no migraine specialists here. If I wanted to see a neurologist again, which I don't because I don't think they have anything new for me to try, I would have to drive an hour and a half minimum or possibly three hours to Portland. I suppose it would be worth it if the doctors could help me. I would suggest searching for a new doctor outside of your immediate area.
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Post  tortoisegirl on Thu Aug 16, 2012 9:06 pm

I don't know what is going to be the best in your situation, but I can say that for me, I had pretty much exhausted all the treatment options through neuros and was ready for something new. Lately I've been seeing a pain specialist and they actually have had some new ideas. Plus, they do a lot of the same preventative meds. I needed to go that route anyways since I'm on long acting pain meds and was stuck in a rut with my primary doctor.

This might be a possibility for you instead of or in addition to seeing a neuro. If you find someone who is receptive to ideas you bring them (or even better, one who has them and thinks out of the box), they should be able to both continue your meds and improve on them. I was pretty sick of going to doctors who didn't have ideas for me. It can be tough to find a pain specialist too though...I went through a few who weren't receptive to the pain meds I'm on yet didn't have any other ideas. It seems like a lot of good doctors are at retirement age in my area too. Good luck! Best wishes.

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Post  Migrainegirl on Thu Aug 16, 2012 11:02 pm

Have you looked into Emory? Your problems go far beyond pain and migraine. You need someone with the training to deal with the fainting and loss of O2 sat. Emory has some excellent specialists in cardio and may have someone who can help you. This is not just a nuero problem.

http://medicine.emory.edu/divisions/pulmonology/index.cfm

http://medicine.emory.edu/divisions/cardiology/index.cfm

http://www.emoryhealthcare.org/neurology/index.html


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Post  sailingmuffin on Sun Aug 19, 2012 4:07 pm

Hi All,

Thanks so much for the advice.

I hadn't thought about Emory and I am definitely going to look into it. Atlanta is not that far from here- about 3hrs. My parents were on the faculty at the medical school there long before I was born. Mom had her last surgery there and that went well. I do not know why I hadn't thought about them for headaches before. Thanks.

I know I need a neuro who is up to speed, particularly since there isn;t an official diagnosis for the fainting, but we all agree that it involves both the brain and the heart.

Until I can get in with Emory, I'll stick with the current neuro.

I am picking up Dora, my service dog tomorrow. She goes to school on Sept 1 and I go up to work with her a few times a week. So that is good.

Pain free days,
sailing
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