ANA Discussion Forum
Useful Information => Physicians => Topic started by: blueeyes on May 07, 2011, 03:18:28 pm
Hello, My husband was diagnosed in March...very small AN 2mm by 3mm I believe. We have an appt. with Dr. Link the beg. of June. Any one with recent experience there? I have found a few links on here mentioning him, but not a lot of info.
I consulted in person with Dr. Link and Dr. Driscoll at Mayo. I live in South Florida. It was the first place I went because it (at that time anyways) had the best reputation for neurosurgery. So I figured, ok, this is the best place, best surgeons etc... Dr. Link told me I would be ok but" would most likely suffer from headaches for the rest of my life"- " with a high probability of severe ones". There was no mention of facial nerve monitoring and repair at anytime during the 1 1/2 hours I was there. The translab approach was never mentioned. They both told me they couldn't get all of the tumor out but would get about 95% out. They told me that having a meningioma was better than an acoustic neuroma because "it was an easier tumor to get out". I also consulted with Univ of Miami..they basically told me my life was over..Shands etc..
I went to House in LA and had Brackmann and Schwartz. everything they told me came true. They removed all of the tumor. No headaches, no balance issues (unless really tired or turn head to quickly), no life long side effects like the other consults I had told me. I am deaf in the right ear (takes time to get used to) and the tinnitus (head noise) stinks. But I am fine, and thats what really matters:)
Good luck to you. House will read your MRI and consult with you over the phone.
Blueeyes, there have been a few people who have went to Mayos. I don't think most are on here very much now, I think some have been happy with the care and others not as much. Each person has their own indivdual case as the tumor location can affect how surgery goes also. Where do you live? I am in central Iowa and several of us go to Univ of Iowa and Dr Bruce Gantz. He has had many from out of state. The very small tumor gives you time to choose what you want to do. I will say Iowa City does not do radiation. Many surgeons are not for it since surgery is their big interest. With a small tumor it might be something you want to look into. The watch and wait is also a choice too if there are few symptoms at this time. Good luck with how it goes for you both. Cheryl R
Dr. Link along with Dr. Driscoll performed a translab with a 12/7 nerve graft on me in January. I will be meeting with them next week for my 3 month follow up. I don't know what he will recommend for a procedure for your husband's tumor. This was my third attempt at what started as a 5+ cm tumor, but my first with Mayo. My original surgeon recommended radiation therapy after my second surgery reduced the tumor to 3cm. I didn't feel comfortable with the direction so I consulted with the Univ. of MN and Mayo. An ENT who I had consulted with early on told me that he would be comfortable with the surgeons at either facility.
I had a good experience with Dr. Link and feel very good about the results (I will know more in a week.). Dr. Link is speaking at the ANA Symposium in June if that counts for anything.
Thanks, We were told we had to see him the beginning of June because then he wouldn't be available...probably because of the Symposium. I think we all know that it can come out best case scenario or worst case....just want to go to someone with a lot of experience! We live in the Twin Cities.
The right person for the job is key. As I said my tumor was big and had been worked on twice so there were a lot of issues. Considering the situation I think they did a great job. I have balance issues which are common to the procedure, translab, and facial weakness, 7/12 graft should help.
I think a different procedure will be recommended for your husband. Have you contacted Dr. Haines at the university? He and Dr. Levine are highly thought of but again may be a specialty surgery. I have had three surgeries and there is a lot to be said for staying close to home.
Best of luck.
I just updated a similar topic in this topic with our thoughts and results. "Recent Diagnosis - trying to help on DR decision"
House clinic in LA, 200+ AN / year, many surgeons.
Dr Gantz Univ of Iowa 70-80 AN / year (half are middle Fossa)
U of M, 4 Middle Fossa past 6 months, I think it was 10 total AN past 6 months, Call them, they will tell you.
Mayo , Driscoll/Link won't tell numbers, from published med journals in 2002 (in Member section), I think it was 2 middle fossa in a year.
We liked Dr. Gantz in Iowa City. About 5hour drive from Twin Cities.
Your health, current symptoms, age and insurance coverage now and in the future are additional factors to consider.
I had removal of AN with Dr. Link and Dri. Driscoll 2 1/2 yrs ago. My tumor was 1.3cm and I had retrosigmoid.
I did have a good experience with them and St. Mary's hospital. I was informed of all of my options and I chose surgery.
I have severe headaches and will probably have my whole life. If I knew then what I know now.
I may have chosen Dr. Gantz for Middle Fossa had I known more about him. When I hear no headaches at HEI, i wonder what they are doing to prevent them.
Certainly check your options and research. Gamma Knife is also a good possibility.
Welcome to the forum. I too am in the Twin Cities and was diagnosed with AN last winter. I consulted with Levine/Haines at the U of Minn and with Link/Driscoll at Mayo. Two very different experiences, I must say but not necessarily because of THEM.
My first visit was at the U and I frankly was quite overwhelmed at the time. They were interested and caring and took time to explain things to me but I honestly I didn't really comprehend much of what they were saying or knew what to ask. I left feeling confused and a tad scared. But they did give me the info that lead me here.
I took them time to learn, ask questions, read-read-read the posts and see what other people are saying and experiencing. After 2 weeks of that research I headed off to Mayo for a consult with Link/Driscoll.
The experience was much better because I felt I was better informed prior to seeing them. They too were interested, caring and seemed knoweldgable. When asked, they both preferred surgery to GK but admitted that they did about equal numbers of both procedures. The docs at the U had treated about 900 AN's (I do not know how many surgery vs GK). Link/Driscoll had treated about 600. They are younger than Lavine/Haines - maybe that explains the difference in numbers. Overall I felt they were competent and I wouldn't hesitate using them for either procedure option at this point but I agree with Tim in that there's something to be said for staying close to home and will probably see Levine/Haines because of the proximity (and of course their expertise).
I am firmly in the Watch and Wait status, my next MRI is June 22 and I have a follow-up with my ENT a few days after that to get a hearing test and go over the MRI results. We'll see where that leads....
I hope that helps - keep us posted on your progress!
Thank you! We just got back from the Mayo and really liked Driscoll and Link. My husband will be doing the GK in August...being educators we have vacations till then planned. It is small- about 2mm by 3mm and basically symptom free so they really felt this was the best option, especially where it is located. Nervous but happy we have a plan.
I am sorry your husband has been told he has an AN, however it is important to ask a lot of questions and make the right choice for him. I was diagnosed last May and had my Gamma Knife on June 22 , 2010. I have been very happy with my choice. The only problem I have had is facial weakness which came on 4 months after my Gamma Knife. I was not happy about that but after a MRI the doctor told me it was due to some swelling and that the tumor was dying in the center which it is supposed to do. Over the last 8 months my facial weakness has gotten better, not 100% yet but I am hopeful. I go for my next follow up MRI on August 25th and that should tell me if we are on the right track. Hopefully it will show the tumor shrinking and dying even more. I was told it could take up to 3 years for the tumor to shrink all the way so I told myself not to worry until that time has pasted.
I had my Gamma Knife at Shand's in Gainsville and was very happy with the doctors and supporting staff. My neurosurgeon is Dr. Friedman and he is one of the inventors of the Gamma Knife. I hope all goes well for you and your husband and if you have any other questions you are at the right place. We are all here to support each other in this journey we have been sent on.
I've been followed at Mayo by Driscoll and Link for 11 years. I'm NF-2.
My general impression is that Dr. Driscoll is quite conservative and maybe rightfully so?
I believe Dr. Driscoll has approximately 12 years experience with AN/NF-2. He was trained by Dr. Jacklar, now, at Stanford. The training was at UCSF.
Both are reasonably young and pleasant.
I think there's a lot of communication among neurotologists and neurosurgeons of different facilities, so, am not exactly sure why vastly different mindsets would occur. I guess it's human nature.
Re; Dr. Gantz, my feeling is if you can work with a person who offers no obvious compassion but professional work, then he is a better choice as has 3xs the experience. There's something about the eglatarian nature of the UIHC OTO Dept. head.