ANA Discussion Forum
Useful Information => Physicians => Topic started by: Dallas on March 08, 2011, 11:46:41 am
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Hey,
Being newly diagnosed, I'm in the process of finding a facility that has experience treating AN. I live in Southwest Virginia, and thus far, my focus has been Duke University. Does anyone know if they are a good choice, speciifically relating to radiation medicine? Any information would be helpful. Additionally, if someone knows of other places in my general vicinity, I would greatly appreciate the input.
(FYI: As of December, my AN measured at a 1.2 cm. I've been informed I have time to weigh my options, so I am.)
Thanks and God Bless,
Ms Dallas Hall
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Dallas .....
Welcome to this forum!
Wake Forest Medical Center in Winston-Salem, NC has an excellent reputation for treatment of ANs with Gamma Knife ..... so if you are considering the radiation route, you might want to check it out. My AN was surgically removed at Duke Raleigh Hospital by a Duke U. neurosurgeon professor, with excellent results ..... but he does not do radiotherapy.
At 1.2 cm you have some time to do your research and all options should still be open for you. What are your symptoms? Sometimes that is a bigger issue.
Best thoughts. Clarice
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Hello, Clarice…
Thank you for the warm welcome. As I’ve already told several people, speaking with others makes me feel less like a patient and more like a person, particularly since the healthcare profession can be rather daunting. (Not too many doctors will let you lean on their shoulder. ;p) This website has definitely been informative and, truthfully, I'm glad it's here for new people like me.
Fortunately, I’m not showing many symptoms. When I was first diagnosed in May, I had sudden hearing loss (the reason why I went to an ENT ) and some balance problems and headaches. Currently, I’m steady on my feet (hence, I can still wear high heels); however, my right ear is muffled, as though a cotton swab is inside it, with constant ringing. When I look back though, I laugh. I wear 4-5 inch heels and, on the onset, I was losing my balance every once and awhile. People would give me weird looks that clearly said, “….Girl, if you can’t walk in those, don’t be wearing them…†or “….she’s imbibed a little too much…†Well, it’s 5-o’clock somewhere. ;p Seriously, that’s all we can really do. Try to take it with a smile and pray for the best.
I appreciate the information about Wake Forest. I will definitely look into it. None the less, I’m elated to hear about your successful treatment with a Duke neurosurgeon. My neurosurgeon is Dr. John H. Sampson and, last Friday, I met with a radiologist, Dr. John Kirkpatrick. Both are Duke doctors and I was pretty impressed, but still undecided.
Again, thanks!
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Hi Dallas,
Welcome to the forum- it is a warm, loving family of people who understand what you are going through. Since your tumor is relatively small, you can take some take to become informed of all your choices and pick what is best for you. Most important is to feel comfortable with your decision and your doctor. Good luck :)
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Thank you! :)
You're so right. I certainly count my blessings that I have some time, not to mention, several treatment choices because many people don't have that luxury. I'm grateful for your support and encouragement, for it gives me hope during this trying time. As one of my favorite quotes says, "We are each of us angels with only one wing and we can only fly by embracing one another." ~Luciano de Crescenzo
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Hi Dallas.
I'm in Southeastern VA (Virginia Beach)!
I actually had my surgery at Vanderbilt in Nashville when I lived there. My surgeon has since moved to NC and is at Duke now. I can send you his contact information if you're interested. He doesn't do radiation, but he did lay all my options out on the table for me before I made my decision, so I didn't feel like he was pushing me one way or another. He could probably refer a good doctor to see for possible radiation.
At any rate, welcome to the forum!
Lori
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Hey there, Neighbor (Lori)...
I envy you, living at the beach! :) You're in a beautiful part of the Old Dominion, what with its panoramic views of the water. I'm surrounded by the scenic Blue Ridge mountains (the Parkway is a short drive to Roanoke), so for an nature lover like me, it's a dream.
Yes, I would be grateful for any information you could pass along. Thanks-so-much! Duke is a good 3-hour drive for me, but it's well worth paying that increasingly high $$$ at the pump if it means finding the right doctor. And from what I've read thus far, that is a critical part of the process.
It's a privilege to be here, among those who empathize with what I'm going through. I'm humbled by everyone's strength and perseverance. I can only hope, when the time comes for my own treatment, I will be as courageous as each of you.
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By the way, Lori…
I forgot to ask if you know anything about the new Proton Therapy Center that opened in Hampton?
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Hi Dallas.
I remember reading about the new Proton Therapy Center when it first opened, but I haven't heard much about it. I have some friends in the medical field so I can ask around and see if anyone has heard anything. From what I read, it's supposed to be good and pretty hi tech.
I'll PM you the contact information and phone number for the doctor I know at Duke.
Right now, I drive 2 hours to Richmond to VCU to see a neurotologist and a neurologist. I would go to Duke myself, but it's hard to plan a 4 hour road trip when you have little ones at home. But, we do what we have to do to see a doctor that we are comfortable with. I can manage the 2 hour trip and be back here in time to get my kids from school, so it works for me.
And, yes, I love VB. We're way down the southern end - right by the border to NC. I've driven through your area and it's beautiful there too.
I have no doubt that when the time comes, you will impress yourself and others with your courage. ;D
Lori
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Hello Dallas,
I'm another DUKE alum, with the Skull Base Team of Sampson, Tucci, and Fukushima. I'll be seeing Dr. Sampson next month for a 5 year checkup. :) Let me know if you have any questions about Duke and the neurosurgery team.
You asked about radiosurgery, check out UVA and Dr. Steiner. He was one of the early developers of the Gamma Knife. I think most of the people who have radiosurgery for AN use either the Gamma Knife or the Cyberknife. There is also a Cyberknife Patient Forum at http://www.cyberknife.com/ that may have good information for you.
Regards,
Rob
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Hey, Lori and Rob (aka HeadCase2) <---------I like your login. ;)
Lori…..Thanks for the doctor information and ego boost. I absolutely needed both! :) I’d definitely appreciate your medical friend’s two cents worth because Proton Therapy is one alternative I’m closely considering. And yes, I’d love to sit in the sun’n’sand and share stories. It sure beats a doctor’s office! :)
Rob, thank you for your comment. First off, W-o-o-H-o-o for your 5-year checkup! Since I’m Irish and it’s close to St. Paddy’s Day, I’m doing a jig for you! :) All joking aside, your story is encouraging and precisely what I needed to hear about Duke’s experience with Acoustic Neuroma. So far, they are at the top of my list. (FYI: I also saw Tucci, and I must say, she was very kind.)
As far as UVA, I met with Dr. Kesser in January. As you mentioned, I was told about Gamma Knife and a surgery called Trans-Lab, but I’m undecided about these. As far as radiation is concerned, I’m leaning more toward Cyber Knife, so I’ll certainly check out the website you suggested. Thanks!
I do have a question for everyone, though it doesn't pertain to physicians, but me personally. Today, I was at a St. Patrick's Day celebration and I noticed when the bagpipes and drums were playing, my ear started ringing and roaring. Is that normal when you're around loud noises? It was making me just a little unsteady, which obviously, concerned me. Since everyone had a green beer in hand, I suppose nobody took too much notice. ;p (Everything is fine now. Just ringing slightly more.)
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Yup, the increased tinnitus (ringing and roaring) is very normal in loud environments. I carry a musician's earplug to put in my "good" ear whenever I am in just such a situation. The ringing can last for hours after an assault like that.
Clarice
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Hey Dallas,
I'm another Duke fan, with the team of Kaylie, Friedman and Fukushima. I had translab surgery 8 months ago. If you have any questions about the surgery or my experience with Duke, just let me know. Once I figured out what was best for me, I had peace. Good luck in your search, you will know when you find the right option.
Angela
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Clarice, thanks for the information about the increased tinnitus. It’s funny though. I had a buzz, but it wasn’t from beer. ;p As you advised, I’ll buy an earplug because I attended a lot of events.
Hey, Angela! I’m glad you found peace of mind and, I pray, your body will continue to heal as well. Please keep me informed about your progress and road to recovery. It’s good to know Duke has a good reputation because I wasn’t sure if I needed to travel to bigger cities for better treatment. (My health takes priority over the miles and money) I was told by a nurse that Ted Kennedy was treated there, so I suppose I’m in good hands should I choose them. Thanks, again to you and everyone for taking the time to reply!
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Dallas,
Another (late) welcome to the Forum. While you are looking for options, don't overlook options in Virginia. I had my surgery at VCU in Richmond and the attention, care, and follow-up, have all been in incredible.
UVa also does good work over in Charlottesville.
I realize though that depending where you are in SW Virginia there are six or seven state capitols closer than Richmond. Where in SWVa are you? My son is a student down in Ferrum.
Good luck with your decision and journey.
-Tod
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Dallas,
Dr. Friedman that did my surgery, is the surgeon who did Ted Kennedy's brain surgery. They have a wall of pictures of famous people that were treated at Duke. This did make me feel better about my choice.
Angela
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Hi Dallas and welcome.
1. Lori, if there is a new Proton Radiation Center at Duke, do you have add'l info? This would be (I believe) the 4th in the USA (other than MGH, Loma Linda and Houston) to obtain one.
2. Ted Kennedy's immediate surgical outcome from Dr. Allan Friedman at Duke Univ can be further read here:
http://abcnews.go.com/Health/story?id=4980749&page=1 (http://abcnews.go.com/Health/story?id=4980749&page=1)
Dallas, I know that you will find terrific strength in numbers (as you are already witnessing) as well as terrific info here. Please take your time in absorbing all the info and know we are cheering you on.
Best wishes.
Phyl
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Phyl,
I believe the new proton beam treatment center they are referring to is at Hampton University http://www.hamptonproton.org/ (http://www.hamptonproton.org/) in Hampton, Virginia.
-Tod
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Yes, that's the one. Not at Duke in NC, but Hampton University in VA.
Tod, I go to VCU for my follow-ups now. Love it there!
Lori
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Lori, if you don't mind me asking, who are you seeing at VCU?
-Tod
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Hello, Tod and Phyl…
Thanks for the friendly greetings! :) It’s reassuring to be surrounded by caring individuals, particularly when everyone understands what a new patient is going through. Yes, your strength of spirit is motivating and the information I’ve gathered is very useful.
Tod, like your son, my stomping ground is the Moonshine Capitol of the world (Franklin County). I live in Boones Mill, a town so small that if you sneeze, you’ll drive right by it. ;p But for a country bumpkin like me, it’s the perfect blend of quaint charm and natural beauty. Speaking of, Ferrum is a beautiful campus and I often drive through and hit Shooting Creek road on my way to Floyd, then connect to the Parkway for a stop at Mayberry Mill. You’re right. I won’t casually dismiss what Virginia has to offer. As I mentioned earlier, I’ve already been to UVA for a consultation about Gamma Knife and, in the near future, Hampton University to learn about Proton Therapy. I appreciate the information about VCU. It certainly sounds like you and Lori are pleased, so I’ll definitely look into it.
Thanks, Phyl for giving Angela the web address about Ted Kennedy’s treatment at Duke because, honestly, I didn’t know. A nurse told me and that’s the extent of it. Angela, I missed the wall of celebrities. Where is it?
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I see Dr. Daniel Coelho at VCU. Dr. Kaylie, who did my surgery at Vanderbilt and is now at Duke, actually did a residency at VCU with him. Did you follow that? I think I've confused myself! ::) I actually didn't know they knew each other when I first went to see Dr. Coelho, he was just the most qualified neurotologist I could find in my search that wasn't 4 hours away. When he walked into my first appointment he said "I know your surgeon!" and he had nothing but good things to say about him, so that made me feel good.
They are very much alike, personality-wise too. Very outgoing and friendly and they don't forget all about you the second you walk out the door. Everyone at VCU has been great about scheduling all my appointments (I also see a neurologist for my facial issues and a geneticist) so I can do as much as possible in one trip, since it is a long drive.
If you're going to go to Hampton to check it out, let me know. Maybe we can meet for coffee or something!
Lori
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Dallas: Yep, Moonshine Capitol of the world. Three-quarters of million gallons produced annually. And sold to college students and others across the state for up to $25/quart. I love the area around Ferrum, I keep hoping my son will want to stay in that area to teach, but he is insistent on coming back to Chesterfield.
While most everyone that has a successful surgery has wonderful things to say about their docs, and I don't ever want to take anything away from that, I simply can't say enough about the team at VCU that worked for 32 hours inside my head. They simply weren't going to quit until they felt they had done everything they could for me.
Similar to Lori's experience on scheduling, my MRI's are scheduled with the neurosugeon consult just about an hour later. Enough time laps for any scheduling mishaps for the MRI and time for the doc to read the results. My docs have also been very responsive via email as well.
Lori: Dr. Coelho is my neurotologist as well. He was one one of my surgeons and spelled Dr. Broaddus (neurosurgeon) during the very few he breaks that he took that very long weekend. Coelho also did my Baha. They make an excellent team, and as I have said many times, I receive excellent ongoing follow-up care from them.
The president of Hampton University spent a fair amount of time last summer bragging about the proton beam center during the meeting of the Governor's Higher Ed Reform Commission that was hosted at Hampton. (I was about 6 months post-surgery and that meeting wore me out!)
-Tod
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Thanks Tod and Lori. Good to know... that is the 4th of awareness. Will be interesting to see what data they come up. VERY limited data/studies noting efficacy of Proton on AN's (specific to AN's). There are AN'ers here that I am following (and have met in person) that were treated via Proton at MGH.... so this is helpful.
Dallas, just watch out for Lori. Her halo tends to shift from time to time ;)
Again, welcome.
Phyl
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Phyl...
I don't know what you're talking about! >:D
Lori
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WoW, Tod…
I should have went into bootleggin’! (Cha-ching!) ;p Hmm, if it’s that many gallons, how come I never see any of it? (Uh-hmm, if I did, I wouldn’t swig‘n‘tell. ;p) At one time, I believe, the Blue Ridge Institute (a division of the college) had a moonshine exhibit, complete with steel and jugs. (No samples, I‘m sure.) I never had the chance to see it, but from what I heard, it was very educating, especially in regards to this particular county. Umm, my Mom is from West Virginia, so she might think they produce just as much. ;p
Lori, I’d love to. Depending on my schedule, I'll probably be coming through closer to the Fall.
Phyl, uh, I’m reluctant to admit it, but mine is a little tarnished. ;p But nothing some spit polish won‘t shine right up. ~A~
Now I see why this board is therapeutic. As they say, "Laughter is the best medicine", and I'd much rather live my life through love and laughs because it makes it easier to smile during the trying times.
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Phyl...
I don't know what you're talking about! >:D
Lori
Me either. I'm confused ???
Sorry for the hijack, Phyl ;D
Jan >:D
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Oh, Jan.... do you have anything to contribute re: Duke Univ? ??? I'm watching... and let's stay on topic, folks...... Phyl
Phyl...
I don't know what you're talking about! >:D
Lori
Me either. I'm confused ???
Sorry for the hijack, Phyl ;D
Jan >:D
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Why yes, Phyl. Funny you should ask.
Regarding Duke University, I've heard only positive things.
Jan
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And they say my halo slips......
Jan, I think yours fell off completely and slid under the couch! :-*
Lori
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*groans*
Thanks ladies for the Duke Univ inputs... and yes, Jan... I've heard the same... nothing but positive re: Duke.
Phyl
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And they say my halo slips......
Jan, I think yours fell off completely and slid under the couch! :-*
Hmmmmm. Guess that was what the cat was chewing on the other day :D
Sorry, Phyl. I just couldn't resist.
Hijack over; I promise!
Jan
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Thanks, everyone. You’re all angels. ;p
It’s good to receive such positive feedback about Duke’s reputation. It will certainly help when I make a final decision.
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Clarice,
I forgot to mention that Richard Lowder contacted me the other day (the man you referred from Wake Forest). He was very polite and answered all of my questions and concerns. I'm still not sure if Gamma Knife is for me, but it certainly gave me some perspective. Thanks for your help!
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No problem. Glad to help with whatever contacts I can. You are doing a great job researching all of your options! Knowledge is power ......
Best thoughts. Clarice