ANA Discussion Forum
Useful Information => Physicians => Topic started by: kmr1969 on September 10, 2012, 01:15:25 pm
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If anyone has experience with UVA and/or Dr. Jason Sheehan, particularly with regards to Gamma Knife treatment, I would appreciate your feedback/comments.
I have an appointment with Dr. Sheehan next week, and I sincerely hope that this will be the last opinion I will need and then I will get the "gut" feeling that everyone talks about. Still undecided, but think I am getting closer. I am borderline radiosurgery and microsurgery due to the size of my tumor.
Thanks very much,
Ken
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Greetings Ken,
While I do not have experience with the particular physician or treatment center that you mention I would be glad to tell you all about the Gamma Knife treatment. If you are firm about your treatment option, then the next step is to get comfortable with the treatment center and the doctor. I would advise that you choose from 3.
My first go round in 2004, I chose from 14! This is because I really didn't want surgery which at the time the majority (13) had advised. The 14th advised Gamma Knife because I had a 3.1 cm AN. Of course, at the time I didn't have the benefit of the advice of the ANA forum!
In 2012, on June 11, I decided to go with Dr. Sisti at NY Presbyterian in Manhattan, I chose him because he was the most comforting and respectful doctor and I had originally gone with him in 2004, and his institution so many years earlier in 1974.
While I welcome you to our forum, it is you who will have to decide on which procedure, doc and treatment center you wish. All I can advise is go with the one whom your gut tells you to and let God take care of the rest.
Take comfort in knowing that now that you are here that you will receive the best advice from those who have gone before you and that we receive no payment for the advice that we give, we just care about those people who ask our help.
Feel free to come as often as you'd like (to discuss anything you'd like) back on your long journey to
wellness! The road ahead is often the roughest but once you've decided the 3 keys (treatment,doctor and Medical Center) it becomes infinitely easier.
Once again, welcome Ken!
Mike
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Mike.
Thanks for the response.
You certainly have me beat with 14 opinions. Dr. Sheehan will be my 5th. I feel like I have spoken to very highly qualified doctors, but like many of the posts I read, I feel that their recommendations have been driven primarily by what they offer. Not that there is anything wrong with that because my AN is between 2.6 & 2.8 cm, so it is close to the limit for GK, and either option will hopefully work - to either get rid of the AN or at least stop it from growing.
I had 2 doctors who specialize in MS recommend translab, 1 doctor who specializes in GK recommend GK, and 1 retired neurosurgeon with a good deal of AN experience (a friend of my wfie's family) say I could go either way but GK would most likely offer the easier recovery.
Interestingly, the size of tumor wasn't the reason that one of the doctors recommended MS over GK, it was my age, 43, and the concern (valid or not) of the long term (20+ years) outcome of GK.
I'm leaning towards GK because I still have good hearing in my affected ear, but I do worry about swelling and greater symptoms after the treatment. Right now, I do have ringing in the ear, slightly diminished hearing, and very mild facial (primarily tongue and lip) numbness/tingling, but my my balance is fine and otherwise I feel very well.
Hopefully, I will get a strong feeling in my gut after meeting with Dr. Sheehan.
Ken
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I wanted to go see Sheehan , but the VA said it "was not in their area".........
Looks like I may go to Riverside Regional Medical Center in Williamsburg, Va........... anybody have any experience s there ? Doctor ?
Pat in NENC
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I was diagnosed with AN on 8/9/12. Dr. Sheehan, UVA, was the first doctor I saw. My neighbor had a brain tumor 10 years ago only it was not an AN. She called UVA and talked with her doctors about who I should see. They recommended Dr. Sheehan. I saw him two weeks later. He was very informative and his staff was great. My husband and I left there feeling very positive about the experience. Last week I went to Mayo Clinic in Minnesota. I spoke with Dr. Link, he does surgery or gamma, and he recommended gamma for me. I told him I had been to UVA and that Dr. Sheehan said to tell him Hi. He said Dr. Sheehan would do an excellent job should I decide to go to UVA. I asked him about other gamma centers towards the east coast. He said New York, UVA, or Pittsburgh.
After talking again with Dr. Sheehan's office, I am scheduled to have gamma on October 12. I live in Virginia and UVA is only about one hour and 45 minutes away. Any other questions, just let me know. Good luck with your decision.
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Cindy,
Thank you for the information and good luck with your upcoming GK. I'm sure it will go great for you. With any luck I hope to be post treatment shortly after you.
I'm a little north of Baltimore so it will be a 4+ hour drive for my wife and I, but I am hoping it will be my last stop before making a decision.
I already did a 5 hour drive to visit Pittsburgh 2 weeks ago and they are obviously very experienced and confident in their process. In fact, I think Dr. Sheehan trained there for GK.
I am confident that Pittsburgh would do a good job and hope that if Dr. Sheehan also feels GK is suitable for me that I will get that gut feeling as to which way to go.
Ken
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Dear Ken,
There is a very good reason I avoided surgery for yes, 14 opinions! It was that I was terrified! for nearly 2 years after my initial surgery in 1974. I was in intensive speech therapy, I had to relearn how to walk and I had to relearn how to write. I had been through the loop once, why was God putting me through it a second time? After February, I realized that I had a purpose for coming to the forum, that was to tell of my experiences so that I could encourage others to seek treatment instead of burrowing one's head in the sand like I did and not pay attention to all those falls all those broken fingers!
I mostly wanted to avoid surgery at all costs! That was of course because I didn't have the benefit of this forum to calm me down and to reason with me as I was searching to find answers on my own. if I can advise anything and be listened to, it is this: this is not a competition by any means, I wasted a lot of time and a lot of money. and I didn't listen to my yellow flags( and believe me there were many over the years).
I have a post somewhere that is called "The Yellow Flag" look for it. At the risk of seeming foolish, don't be like me! I wish I could have had this irradiated when I had the chance.
If you feel comfortable, then go ahead with it. I will pray for you. Again as time passes more slowly now that you have made your decision know that you have made the best decision and trust your gut and go with God. You can meditate as I did, a good meditation CD to listen to is the "I AM" meditation by Dr. Wayne Dyer.
Keep me posted.
Mike
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Ken,
I saw Dr. Sheehan for a consult with my AN. He was very nice and answered all of my questions. They paged his colleague Dr. Gregory Helm to come down to neurosurgery clinic to discuss microsurgical removal of my tumor as well. I chose the surgery with Dr. Helm. Also had Dr. Hashisaki, ENT, who assisted Helm. They were great at UVA. I am now 3 mos post op. Doing alright. I do still have issues with my balance, tinnitus and I am SSD. It takes time to get back in the swing of things.
Best Wishes to you.
Jan
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Thanks for your response, Jan. I hope your recovery continues to go well and your balance improves.
Dr. Sheehan's assistant had asked if I also wanted to meet with Dr. Helm, but I told her that I was comfortable with a facility for microsurgery. If I decide to go that way, I will most likely go with Dr. Brackmann at the House Clinic. Even though that means flying across the country and being very far away from family, I think they have the most experience and offer the best chance of a very successful outcome.
I am hoping to have some clarity after meeting with Dr. Sheehan and hope to make my decision by the end of weekend.
Again, thanks for your information.
Ken
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Hi Pat, The GK facility at Riverside is in Newport News and is in partnership with UVA. As I understand, it is the newest GK machine. For more information see this link http://www.riversideonline.com/services/neurosciences/
Good luck.
Skip
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Dr. Jason Sheehan and his staff at the University of Virginia in Charlottesville are fantastic.
I'm very happy I flew from Michigan to Virginia to be treated with Gamma Knife by Dr. Sheehan.
https://uvahealth.com/findadoctor/profile/jason-p-sheehan
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Went to UVA from Texas. Also checked out Stanford and Pittsburgh. Those are probably the best radiators. Lunsford is the best and trained at Leksell I believe, where GK started. He is the leader in the field of GK, Sheehan is an MD/PhD with lots of publications, and also trained with Lunsford. Stanford for Cyber knife consult was great, probably the best for that method. I chose UVA because Sheehan answered emails promptly, anytime, anyplace. Great reputation, very old GK center (I think among the first started in US) and we had friends there. Pittsburgh was a little unattractive in January, but between Pittsburgh and UVA, you can't go wrong. As a side note, I'm a professor at a medical school and have access to all of the journal publications. I spent about 3 months researching AN's and the treatment, and wavered from being terrified of the surgery, which at first I thought I needed, to being quite comfortable with GK. Making the choice was the hardest aspect.
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Blw,
You don't have any second thoughts about not going to the "best radiators" in Pittsburgh and Stanford? I'm thrilled with my outcome at UVA.
Speaking for myself, I wouldn't care less if the "best" was located in the middle of Iceland in the coldest winter. I would travel there if my insurance covered it.
Interestingly enough, one of the "best" refused to treat me with radiation after I was previously deemed an "excellent candidate." The reason given was that my tumor had a growth spurt and grew too fast, even though it was still considered small (1.3 cm to 1.8 cm). I've seen him treat AN's twice the size.
I believe things happen for a reason, and sometimes life has a funny way of working out.
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No concerns. Sheehan was fantastic, and the whole group was excellent. I did finally see detailed picts of my tumor after the 3T image and there is an extension that is growing toward the cochlea. I don't know if the cochlea got hit with radiation, but the fact that I can already see clearing at 6 mos is great. If I has more time, I read more about a comparison of CK and GK regarding how accurate they are around the cochlea. Probably not much difference between the two, but then again 1mm could make a difference. My main goal was to not have to retreat. I'll deal with the hearing in the future. I have a great ENT, another MD/PhD who runs a hearing clinic and also performs surgery. I was fortunate to get access to really good people down here in San Antonio.