I have been diagnosed with a brain dural fistula. I live in Alabama so the first place I went was UAB. All they could advise there was open surgery. Next I went to Johns Hopkins and met with Dr. Colby and Dr. Coon. They did another angiogram and recommended embolization with open surgery as a last resort. Much better news I thought since it could be cured without surgery. Lastly I went to Emory and meet with Dr. Barrow and Dr. Cawley. They too agreed with Hopkins and recommended embolization first and open surgery if needed. Both Hopkins and Emory think the embolization will work. My dilemma is this. Atlanta is much closer to me (3 1/2 hour drive vs about a 12 hour drive) than Baltimore. I really connected with the doctors and staff at Hopkins and believe they did the heavy lifting to determine if I was even a good candidate for embolization. Emory had the angiogram report from Hopkins (I gave it to them) so I believe they determined their treatment recommendation based on the Hopkins report. I feel a little sad about it because Hopkins really bent over backwards to make sure we understood things and really treated us well. They will answer any questions I have day or night. All I have to do is send them an email. I'm not even sure how to get answers from Emory yet. Not to say they wouldn't be helpful but I doubt they could do it better than Hopkins. I know for my wife Emory would be better because it is closer to home and my daughter is only 100 miles away if she needed her. I think either facility would probably do a great job and I know Dr. Barrow is one of the best if open surgery is required. Has anyone been in this position before? Maybe I need to make a pros and cons list. I'm really torn on what to do.
Johns Hopkins is a world renown hospital with great surgeons. However, I can tell you that Dr. Barrow is one of the best AVM doctors around. At that level of expertise…I doubt any of them would have their feelings hurt if you choose one over the other. Best of luck and please keep us posted!
Hi there Joe,
Glad to read that the test was used in order that a proper diagnosis was discovered. I live in Baltimore City, and Johns Hopkins is rated as the #1 surgical teams in THE WORLD. Only telling you my background...My angiogram was done after a stroke (2/12), and my Neurosurgeon Dr. Tumargo at JHH recommended Cyber-Knife since hemorrhage was still going on. This surgery saves my life. Just had a 1-year check-up with Tumargo who told me that JHH handles 200 AVM patients a year from all over the world. I feel I'm lucky to live here where JHH is close, but I think that traveling to the best doctors to heal a rare disease is worth it. Hope your decision and peace come through!
I had a fistula as well and I went to Stanford. It sounds like to me that you trust John Hopkins and I think you need to go with who you trust. Mine was complex and was/is controlled so far by angio/embolism. I had it done Jan of 2012 .
Mine was on the left side of my brain. I was in surgery for 7 hours the weirdest part for me was being awake. It had 30 artery attachments and one vein. They controlled it with medical glue and onyx.
I did have a lot of head pain afterwood I think cause I could not stay awake cause it looked like a spider and was going to freak out.
I get botox shots every 3 months for the pain but prior to the fistula I had a massive rare stroke that causes pain as well so the combined was just too much too close together I was able to go back to work full time and pretty much back to my normal life. I stil get tired etc but no longer hear the constant whooshing or pass out. Once in awhile I will hear thumping but they just did another MRI and they dont see anything
Good luck let us know what you decide and when you are scheduled
Angela
Thanks everyone. Scheduled with Emory on 8/14. I'll give an update when it is over.
How did you like Dr. Colby? Truth be told, I sent them my MRI results and I've had his office call me no less than 5 times to basically beg me to come there. I just found it very odd. Pushy, almost. I really think people's opinions on doctors strictly come from their experiences.
I did like him and he took the time to figure out the best option treatment for me. Hopkins is very patient oriented which feels strange after dealing with just so-so patient care at other places but I didn't feel like they were pushy.
I went to Johns Hopkins and felt so safe in putting my life in their hands. Their hospital is #1 in Neurology and Neurosurgery in the country. My surgery was back in 2005 and I was so impressed, I am still talking about it to this day. For me, I would err on the side of caution and choose a hospital which feels right for me, not because it is closer and convenient. As long as you feel confident and comfortable with your decision then that is all that matters.
If you see Dr. Barrow… Tell him an old Eastern Airlines Flight Attendant says Hello! Please keep us posted!
Just got home after the surgery on Thursday. The embolization was a no go due to the twisty turning aterias. Dr. Barrow did the surgery and he really did a really nice job with it. Overall the experience at Emory was very good although surgery is never fun. I am tired and a little poor but overall doing well. No negative post surgery problems. Very thankful for the staff at Emory, my wife and daughter who camped out with me four days at the hospital and of course for God's mercy and grace.
Thank you for keeping us posted. I hope you have a speedy recovery!
Hello Joe
Glad you are doing well. How did they resolve your twisty turning aterias?
Are you on meds? Be sure to get lots of rest and do not push yourself
I will keep you in my prayers
Angela
I know they worked at it for about three hours to try and find a way to get to the fistula with onyx but were not able to get to it even on the veinous side. Of course I would have preferred to not have the surgery but Dr. Barrow said I came through it with flying colors. Surgery was Thursday and back home on Saturday so I'm happy about that. Now I get to drive my wife crazy for about 4 weeks. They don't want me to drive until I've had my follow up which is in 4 to 6 weeks. My meds are pergocet (pain), famotidine (reflux), dexamethasone (steriod for swelling), stool softener and a med for nausea. Pain is not bad and I haven't had much nausea. Thanks for the prayers Angela. I have felt those prayers and it has made a big difference.
You have the right attitude and I am sure your wife wont mind driving you My husband drove me for over six months. Try taking magnesium its great for your head pain and to keep you reg I take 500-1000mg a day depending on how I feel.
I can not longer take pergocet but I take Tramadol and it does not make me nausea
I take zofran for nausea which makes me sleepy which is a bonus
Get lots of rest and dont push it-
a few of my arteries and veins were too tiny but they got 29 arteries with combo of onyx and medical glue its been over a year
God Bless
Angela
Good to know about the magnesium. The most trouble I had with pain was the headaches like a sinus headache. Morpine and pergocet didn't seem to help much with that but the steriod did. However I'm on my last day for being able to take it.
Hello Joe
The pain you are describing the magnesium should help to start you may want to get some 250mg and take some three times a day That way you can tell how much is working and if 750mg is not doing it up it to 1000mg and see if that works give it a few days before you up it-
Drugstore.com is having 20% off vitamins and they have free shipping if you order 25- also you get a % back each qtr to spend on your next purchase. I really like them and then I dont have to leave the house and deal with loud crowds at the store.
Also be careful of taking steroids they do make you feel better in the short run but can cause other problems in other areas in your body later. They also destroy collagen
http://www.drugstore.com/search/search_results.asp?N=0&Ntx=mode...
Angela
Angela, we can tell other members what has worked for us, but we should not be asking them to "try magnesium" and recommending dosages, as that is offering medical advice. Magnesium can increase bleeding risk, and we do not have Joe's medical records in front of us, so cannot possibly know if it would help or harm him. Joe, please check with your doctor about magnesium. Angela, it takes awhile to figure out the line between sharing information and offering medical advice -- I commend you for trying to be helpful, but we must always ask members to check with their doctors before trying anything new.
Hello dancermom
Yes very true always check with your doctor before taking anything including supplements. I always do check with my neuros and would not suggest otherwise. I know my pain neuro highly suggests it but would of course want all people to check with their doctors
http://umm.edu/health/medical/altmed/supplement/magnesium
Angela