I am looking for a neurologist in the Tampa - St Pete area who has experience with the after effects of a DAVF. I have not found anyone who understands my concerns and issues.
My DAVF wa successfully embolized in 2003 but I am aware of definite speech and language problems that have not been addressed. It is really important to find someone with background in this area.
Thanks for any recommendations.
Hi, St. Pete, this might be a place to start looking: http://www.elevatinghealthcare.org/tampa/services/neuroscience-institute
DAVFs represent only 10% of brain AVFs/AVMs, and they behave differently from other brain AVMs, so it can be more difficult to find a doctor with experience with DAVFs. Have you have a follow-up scan to make sure your DAVF is still inactive?
You may also wish to join our Aphasia group to talk with others about your speech and language difficulties: http://www.avmsurvivors.org/group/aphasia-friends
I happen to be living in Tampa, as my son is a trainee with Next Generation Ballet. I am really enjoying my Florida experience. Best wishes to you!
I am so glad to hear that your DAVF was successfully emobolized in 2003. What was the location of your DAVF. I live in California and had mine taken care of at Stanford with Dr, Marks. I had problems just that day with my speech, I know when I get tired sometimes I say the wrong words but I think people are used to it by now. Before my DAVF I had a rare stroke and still have some issues with my leg and its been two years and the doctors are finally going to run some more tests. We just have to keep pushing the doctors to look at us as a whole...
Best of luck
Angela
Thanks for your reply. Mine was left side transverse sigmoid sinus, high risk. It was originally diagnosed as a glioma in the left temperal lobe. Finally correctly diagnosed and repaired by Drs. Higashida, Halbach, and Dowd at UCSF. They are more than terrific. My speech issues are not great, but I am aware of them and would like to lessen the frustration.
Thanks for your reply. I am aware of the "rare birds" that we are so finding someone who gets us is also rare.
Not only have I had scans that show complete obliteration, but had a 6 months angiogram that agreed. This passed Feb., I had a 10 year angio that confirmed the previous results. So, I am confident that the DAVF is no longer a factor in and of itself.
p>I appreciate the 2 links. Dr. James Lefler (trained at UCSF) did my recent angio at the Pepin Heart Institute.
Thanks.
Hi , I jusr had a visit with the neurologist yesterday after my 2nd MRI with MRA this time. He suspects there is a possibility of DAVF and will be referring me to Stanford. I am apprehensive as trolling for answers it seems like this is dibilitating for some. Can anyone tell me how long from diagnosis to treatment it takes? How long from tratment to resuming normal life, like going back to a job it will be? We are set to move out of Ca in a month or two, and thus will be a factor as the best doctors are in the Bay Area.
Thanks for any advise or insights.
Hello Angela,
I just went to see Dr. Marks today and now I'm officially diagnosed with DAVF. Any words of wisdom as I am trying to make a decision to have the angiogram with treatment?
Thanks.
Hello Leigh
How are you doing? Well Dr. Marks is the best. Are you still here in the bay area? I can meet with you or give you my phone number if you want to chat.
What symptoms are you having? What is the location?
I know its overwhelming to say the least!
Angela
Hi St Pete, Were you diagnosed with an AVM by having an angiogram or was it with an MRI or CT? Which doctor helped you? I have met with Halbach and he wants to do an angiogram but none of my non invasive tests show an AVM or fistula. I have Pulsatile Tinnitus and no one can find the cause. Did you have the angiogram first the go back to have another one and had your AVM fixed or was it done all at one time? If you had the angiogram first how was it and were you awake? I have been putting this off for over a year becuase the test just scares me.
I also saw Dr. Do at Stanford but I didn't get a good feeling about him.
Gald you are doing well.
Sorry for delay in responding. I am out of the country. (yippee!) An MRA and MRV were the tests that led to the angiogram. The angiogram showed the DAVF, not an AVM. The angio was done on a Tuesday, the embolization was done on Wednesday, and I went home Friday morning. Believe me, trust Halbach. The angiogram isn't bad. I was awake and had no problem. I had a follow up angio 6 months later and all was well. I recently had a third done (10 years later) locally because of new symptoms and happily there are no issues. Drs. Higashida, Halbach and Dowd at UCSF are the best at what they do. They have followed me and answered my questions for 10 years with never so much as a quibble and I am 3000 miles away.
My first symptom was Mar. 28, 2003. Local doctors could not diagnose the problem. I went to UCSF April 28. Tests and diagnosis took until May 12. Embolization was done May 13. I flew back to Florida 3 days later. I never had anything from which to recover. I was lucky. It is debiliting for some people. You definitey want this treated in San Francisco. I can't say enough good things about UCSF.
Hi,
Perhaps your UCSF team could recommend someone in Florida?
Best wishes.
They have. Dr. James Lefler at the Pepin Heart institute in Tampa. He trained at UCSF.
Hi St Petersburg, I am also in the st Petersburg area, my story is a long one, post emblozation for a grade four davf,8 months out. With onax, left with awful loud Tinittus,have not slept in 8 months going insane…I had a great nurointro Dr Zinvoy Katz at Bayfront, he is with Dr Shorter brain surgeon, they are both fantastic, they are still working with me to figure all this out …I went to usf in Tampa, Dr Harry Vanloveren, very good Dr but trying to reach him,get appts almost impossible. So I have stuck with Dr Cedrick Shorter and Dr Zinvoy KATZ, in st Petersburg, as far as actual nuro,to matain after surgery good luck. I have been to six that I knew more than them. If you find a great one let me know. 