Are there any of you locals that could recommend a General Practitioner around the Raleigh area that knows anything about an AVM?
I have a great neurologist, but he doesn't handle routine things, like high blood pressure.
I've been dealing with high blood pressure on and off since my bleed. Right now it's on the high side.
I went to my GP and talked to them about it and they threw some drugs at me. However, some of the side effects include dizziness, lightheadedness and general "fogginess". Well, not such great side effects for someone with a brain injury that deals with those issues already!
I realize that AVMs are not your run of the mill condition, and many GPs know very little about them. But the one I've been going to is aware of my medical history of AVM, bleed, stroke, etc. I expected that they knew at least what an AVM is.
When discussing the blood pressure issue, she tells me that she is hesitant to prescribe something because since I have a history of stroke I am at an increased risk of another. Uh....no, that is not correct. I old her the stroke was the result of the AVM and the bleed and since the AVM was removed I am at no higher risk than anyone else. She asked if I was sure that the stroke was caused by the AVM bleed and if that was what the doctors had told me. Really??!
Anyway, long story longer. If anyone knows of a GP in the Triangle area that knows something of neurological issues, please let me know. I'm just frustrated!
Hi Trish. A good GP is always a good thing for things like the flu. However, I would suggest that you find a good cardiologist. When I hit menopause my BP went up. My old GP had no clue to handle it either. In fact the drugs prescribed to me…made my BP go up. I went to a cardiologist and he was took a detailed medical history of me and was familiar with AVMs. He checked my heart out completely…echo…EKG and nuclear stress test. As it turns out…all I needed was a diuretic.
You go, Trish! So sorry about & completely understand your physican frustration(s).
It may be the case of 'trial & error' before you find a good one (which is often the case = grrrr), but don't give up on finding one b/c your health is DEFINITELY worth it! Good luck!!!
Hi Trish…High Blood Pressure runs in my family. I’ve had HBP for over 30 years. Therefore, I see a GP that is also a specialist in Hypertension & Nephrology. When I told my wonderful GP that I had an AVM…he did major research to understand my conditions. I also have a low thyroud level and take a med for that as well…yes, I take lost of meds. My GP had to figure out what meds didn’t complicate the other meds. I’ve been on the generic form of Zestoretic for my HBP. It hasn’t caused any side effects and I’ve been on it for years. If I had to find another GP, I would ask that the Doctor either knows about AVM’s or will do research to understand. Truth be told, we have to educate them ourselves. I know how you feel, as I went to my OB-GYN doc and she had no interest in knowing what an AVM was that caused my brain bleed, so I decided to change to another doc. Good luck, but keep on looking for a Doc that cares about you!
Weezie, I’ve got 2 doctors who really showed they care about me: my OB/GYN and my neurosurgeon. If I could go to either of them for everything I would be one happy woman. My OB/GYN knows all about AVMs as his father died of an AVM bleed when my doc was a kid. (interesting coincidence, no?) I feel like I need to have interviews with doctors now, how ridiculous is that? I’m going to ask around in my community to see if anyone knows of someone good. I’ll go from there I guess.
Louisa Cicillini said:
Hi Trish...High Blood Pressure runs in my family. I've had HBP for over 30 years. Therefore, I see a GP that is also a specialist in Hypertension & Nephrology. When I told my wonderful GP that I had an AVM...he did major research to understand my conditions. I also have a low thyroud level and take a med for that as well...yes, I take lost of meds. My GP had to figure out what meds didn't complicate the other meds. I've been on the generic form of Zestoretic for my HBP. It hasn't caused any side effects and I've been on it for years. If I had to find another GP, I would ask that the Doctor either knows about AVM's or will do research to understand. Truth be told, we have to educate them ourselves. I know how you feel, as I went to my OB-GYN doc and she had no interest in knowing what an AVM was that caused my brain bleed, so I decided to change to another doc. Good luck, but keep on looking for a Doc that cares about you!
I used to live in the Triangle area, Cary. I am sorry to say that I never did find a stand out doctor for my son. He has a facial AVM, though. We used to go to UNC. Good luck! We have lived in many different cities and have been all over for my son, but we always have to go to our best doctor we know, Dr. Suen. Like I said, he has a facial AVM, so I hope there is someone out there close by to treat you!
Wish I had a recommendation Trish but I like Barbara'a advice about going to a cardiologist or even ask your ob/gyn for a recommendation. Who knows he might know of a good one and you do have the AVM thing in common. Best of luck gf. :J Keep us updated. Yeah stupid doctors abound... oops, did I say that?
Perhaps even doctors could learn a lot from this site.
Hope all is better soon.
Trish, I see a doctor that's specialty is Hypetension and he also is a Internal Medical doc. I am very fortunate because when he found out I had AVM he researched and now totally understands me. When my sister called him to tell him I had a bleed, he cried. He's amazing...which you could come up here to Providence RI...BUT he is so discussed with the way the health insurance companies are these days and the high taxes here in RI, that once his daughter gets out of school...he's thinking of moving. He's been my savior for 20 years..he is the best...I don't know what I will do if he leaves. It really scares me and I have an appointment with him next month and we need to have a serious discussion about it.
wait... you posted this over a year ago... just now saw that (I will never get used to the year changes)... soooo tell us how it went and I hope you're feeling well. :J
See...with my short term memory loss..I forgot that I replyed twice! Scary isn't it..
You are fine Louisa. Don't even beat yourself up. Remember you are awesome in so many other ways. ;) ((((((Louisa))))))
Hi Trish, I'm new to this site, and I'm so glad I found it. When it was discovered that I had an AVM, I was so lost... my wife found the information we needed to save me by doing research that led us to the West Georgia AVM web site. The most important piece of information I got from there was "don't stay local because it is convienent". Further reseach led us from St. Louis, Mo. to Phoenix, AZ and to Dr. Robert Spetzler. While my surgeon in St. Louis told me I was inoperable, Dr. Spetzler removed my AVM's surgically. He is remarkable, and available... I would recommend him highly. Good luck!
Thanks for that Blueliner, but I actually posted this blog about a year ago. My AVM was also successfully removed post bleed here in NC by another remarkable surgeon, Dr. Koeleveld. I was just looking for a general doctor that had some knowledge of brain injuries locally. I hope you find this site as wonderful as I do.