So confused

Hmm don’t know where to start my head is just spinning. I had a left internal carotid artery dissection in Nov of 06.Found out after carotid angio that I have bilateral FMD. No local Dr’s with knowlegde of FMD… so frustrating all said have to go to teaching hospital. So did find great Dr @ U of Florida ( a couple of hours away). I was on coumadin for over a year now on 325 aspirin daily and regular MRA’s every 6 mos. well just had MRA and an irregularity was found, trouble is my local neuro told me to send report to U of Florida and attatch note asking his opinion. hhhh so tired of getting run around the report was not clear to her and obviously not me. I just feel very lost…thinking I’m ok then having second thoughts… I was in hospital this past summer because of chest pain . Underwent cardiac cath becasue MRA of heart had artifact by subclavian artery so to be sure they did cath. Things looks clear and no blockage was found ( huge sigh of relief). Well after this past MRA said could be possible slight blockage of subclavian artery. Just want some opinions I haven’t seen a vascular Doc ( probably only specialist I haven’t seen) Should I consider?? I’m 48 with 3 kids and Ra …

Hi Planetlucy,
I would say definitely find a vascular doctor or surgeon. Keep looking until you find one that knows about FMD, not all of them do. It might take some educating from you to inform them. FMDSA has a great printout, I gave it to my neurologist and physician so that can be informed as well.

Good luck and hang in there.

I am sorry you are having a hard time. I think i would drill these Dr. for more answers. If they dont know, make them tell you that they don’t know anything, then get them to send you to someone who does. It sounds like your local neuro is looking for answers also? He is not sure, or he would not send report somewhere else.
it sucks so bad to get the run around. I spent 2 years in and out of doc offices and hospitals. I was so depressed.
Momma “D” is right, she has given the best advice.
God bless to you and yours,

I would try to find a vascular surgeon. You live in Florida are you able to go to Mayo clinic Jacksonville. I have gone to the one in Minnesota and found them to have a great knowledge about FMD. Good luck.

I also was diagnosed with bilat FMD of the carotids. I had a dissection on the left with a small aneurysm. Followed every six months with MRA. After much run around I saw a different neurologist today who is going to send me to a vascular specialist at UCLA. He also is going to do a renal and aorta ultrasound to look for FMD in other arteries. This Dr says he has never encountered anyone with this after all his years of practice. So I think vascular is the way to go. Good luck. Hopefully I also find a Dr with some knowledge of this.

YES Mm,I THINK YOU SHOULD FIND A VASCULAR DOCTOR. It is very frustrating to say the least. Doctors that know anything about this are very hard to find. When I first was diagnosed over 30 years ago I had a doctor at the medical college in Houston at the UTMB and he was a professor that knew about this fmd. He died in the latter eighties and I live in another state and NEVER have found out who took his place or who understood about this disease. I have not been able to find out who or where or what has happened to my records about all this. It is all about money now and the hospitals even the ones at the medical schools are all about money. The ROOT of all the worlds problems. Since the memorial system has taken over all the hospitals our medical system has declined as far as helping people know more about diseases.( jmo now!) But that is how I see it from this point of view.
I get by with meds now and I am just simple blessed to have lived for this long since discovering this. I only have had it in the right renal artery and had a surgery to try and replace this artery but no success. Thank you GOD for creating 2 kidneys. :slight_smile: I have 3 grown children now and 7 grandchildren so God has been blessing me for a along time. It has been hard and frustrating. I have learned to talk with my GOD and give my worries over to Him. That is how I do it and so far I am good. 58 years old now and still having a good life. Oh yes, I hurt sometimes and tired sometimes but I just keep on going and giving THANKS to the ONE who supplies all my needs.

Gods blessings upon you and all your situations. Peace to you,in Jesus name.!

Momma “D”

planetlucy wrote: