gamma knife vs. fractionated radiotherapy in NY area - recommendations?

[NYStateUser]

Hi everybody, we are new to the mid-hudson area and are looking for any thoughts and recommendations on providers and experiences with radiation treatment for AN in the hudson valley region. Would greatly appreciate your thoughts on your experience deciding between gamma knife or fractionated radiotherapy radiation treatment methods and if you would provide some recommendations for surgeons in this area who perform radiation therapy for AN. Does anyone have experience with Albany Medical Center? We are open to traveling to NYC or Boston or near by centers if needed. Thank you.

[Blw]

I grew up in that area and think there is really nothing up there that could handle an AN. Go to NYC or Boston, look for universities or perhaps large medical centers that actually have AN treatment centers. That way you will know that they have seen a lot of these and know what to do. Keep in mind that Gk treatment takes a morning, and all totaled, you would be about three days--they take some imaging shots to help guide the radiation a couple days before. You can drive to a lot of good places. These would include Johns Hopkins, Boston, Columbia or Cornell in NYC, or you could even go to the best Gk center--Pittsburgh with Dr. Lunsford. I was treated at UVA, but that might be a bit of a long drive from NY, though they were fantastic. A drive to Pittsburgh in the fall would not be a bad deal.

[Mlamb]

Hi there. I had Gamma knife with Dr. Kondziolka at NYU a this past April. So far I have no issues to report. I had a retrosigmoid craniotomy December 2015 to remove my tumor but over half was left behind so I had to also have radiation. Any issues that I have are due to the surgery absolutely nothing from the Gamma Knife. Dr. Kondziolka trained with Dr. Lunsford and has a great reputation.

Good Luck

[Blw]

Dr. Kondziolka has a very good reputation.

[NYStateUser]

thank you all for the good information,
if we choose to go to boston for  cyberknife, can anyone tell me the best surgeon for ck there and the best hospital ? Or there any good CK center in NYC and physicians?
still in the process of deciding

[jim j]

Hello miamib,& NYSTATEUSER,  Dr Klonzioka at NYU is good but get a second and 3rd opinion. This is my experience to date so be careful ask questions and look at the images. Know the slide numbers from the MRI be you are your best advocate you can ask the Dr and write it down everything. Don't be nervous and it is your right to take notes. Important. I had a large 5cm x2cm acoustic neuroma in 2003. I had the The Middle Fossa Approach and it took 11 hr's. I had lost some hearing before the surgery I just wanted my facial nerve preserved. It is a tuff recovery and long. I had facial paralysis after the surgery but he did not cut the nerve I had a fluid build up and after a week with a tube draining the brain fluid that had built up it started to dissipate. I had the tube removed and I still have a small amount of facial paralysis. I lost my balance and total hearing loss. I could not see well out of the left eye and looked like jack Nicolson from Once Flew Out of The Coco's Nest. I tried to laugh at myself but couldn't. No movement. I must say I looked funny but it was hard at 40 years old having such a loss did not sink in right away. But I was told the tumor was I quote "FULLY RESECTED EXCEPT FOR A SMALL PIECE OF NON NUCLIA THAT WOULD NOT HAVE ANY GROWTH NOR EFFECT" I had to go for MRI's for every year for 7 years I was told. I did so while trying to regain what I had lost which was a lot. I went to the same place for 4 years and overtime I got the report it was not noted but it was 1 mm bigger each year so I asked how could this be 1 mm bigger every year and you don't say there is any growth, excuse is who the radiologist was that read the images. so now 4 years later and 5 mm bigger I showed My GP dr the first report and the last MRI report and he said you right it is larger and all it is someone does not know how to use a ruler or they are not comparing the images. I since moved to Sarasota Fl and kept getting the MRI's done. By my 5th year in Sarasota I was told that the "PIECE OF TUMOR" has doubled in size and I need to see a Neurosurgeon right away. Great news bad day or Bad day bad news, but I had just had twin Grandchildren and I was 55 years old and wanted to move back home as did my wife to be near them north of NYC. I knew I needed my surgeon back I did not tell anyone just agreed with my wife moved back and got down to the surgeon. By now it was 7mm x 13mm and he looked surprised. He stated I had a choice oh great choice love them Surgery again" NO" cyber knife or Gamma Knife. so I went for door #3. I went to the Neuro Oncologist and came up with a plan. He would zap the tumor it would grow more but thats expected and 90% chance it would die. Great odds I never won the lottery I can win this. I went through it and I have to say the procedure was easy. The 3 months after were a nightmare, the radiation through off the my glands in my brain that control the Thyroid and everything was off. I had and have headaches my white blood counts were going up and up every 2 weeks I was sick they almost took a piece of my bone morrow out thinking I had some kind of bone cancer because the type of white cells came from the bone marrow. But the Oncologist said it had nothing to do with the Gamma Knife. Finally 4 days before the bone marrow extraction I started feeling better I asked for another blood test and everything was back to normal. My GP said he has never seen anything like this before and the Oncologist stated Nothing. I got back for my 6 month check up at 7 months and thought this will be great I brought my wife thinking a nice lunch in NYC to celebrate would do her good, as she is a very nervous person. I had not wanted her at anything because she worries to much. We got there did a new MRI and went upstairs waited and waited then in comes the Dr and he looks over the slides and keeps looking then turns and says wait for it wait YES it looks like it is dying by the black in the middle and the white around the edges thats indicative of a dying tumor. Great But he says I did not see this before? Oh no there goes lunch. He found what he claims is another piece of the tumor growing and much larger then the one he zapped because of the radiation, and it is on the facial nerve right where it goes into the Brain Stem. I said how do you miss something like that? HOW he said well if I had seen it I would not have radiated I would have done surgery. So I looked at my wife sitting there like she was hit by a car at 100 miles per hr. I said to her look at it this way he got 1 out of 2  so we are batting 500. She did not like that and started a barrage of question for the Dr who's head was already spinning from what he was looking at. My wife is smart and does not forget he's in trouble now she gave it to him and I knew why because once you have radiation it makes the very elastic and hard to resect. I knew not only was I in trouble but so was he. I now have another unseen piece of an acoustic neuroma that was suppose to have been fully resected and just watching the piece he left in. The Dr could not really answer any of our question he claimed he could not pull up the MRI he did just before the Gamma Knife the old computer is not working trick I guess. Bottom line my tumor did double in size from the gamma knife and it looks to be dying. But the other unseen tumor is large and on my facial nerve and brain stem needs surgery and will loose my facial nerve. I guess what I am saying to you don't worry I read the tumor can grow quite large after Gamma knife but if you want to know if it is dying it should look like a bulls eye black in the middle and white around the edges. I hope you can see that on yours and if your tumor is that large and dying ask for a steroid for a week it can help sometimes with that swelling. I take 2 advil every morning to get rid of the headache and it helps. I hope this helps you sorry it was sooooow long in getting to the point but you have to think things could be worse. I wish you good health and Thanks for letting me vent or what ever you want to call it. JIMJ

[mcrue]

I thought Middle Fossa microsurgery was for tumors 1.8cm and under.

I'm not a doctor; however, 5cm seems like an extremely large tumor.

[jim j]

I know he thought he could go the easy way and fully resect it and it turned out I was cut from The top of my forehead to down below my ear. I have a plate in my head and he told me after the operation he had to use additional methods as it was large and more sticky then thought. The rule of thumb i was told the larger the tumor the least sticky and easier to remove. That was not the case. So we started with that approach which lead to additional measure not sure what happened. But I was just happy to get most of my facial muscle back until now. I realize something went wrong and I will never know.

[mcrue]

The rule of thumb i was told the larger the tumor the least sticky and easier to remove.

That's what I've always read online too.

[jim j]

I just look at my Operation report which I kept for this reason The surgeon had wanted to try the Middle fossa approach to try to preserve what little hearing I had and protect facial nerve but ended using both the Middle fossa and Translabyrinthine: both approaches thus the large scar. and the need to try and preserve the facial nerve the 2 approach was needed.I guess thats why it took 11/1/2 hrs. before I came out. He told me the next day it was a tough tumor to resect and pushing on the brain stem he felt more comfortable he stated the tumor was more difficult to remove then expected and thus making a larger incision. I trusted him and I did not want any facial paryalisi at my age of 40 at the time. I had just had back fusion 2 years earlier and was dealing with that. This came along and I went to 3 of the top surgeons in NYC for the removal of an Acoustic neuroma. I am happy with the fact I kept my facial nerve intact for this long because not 1 doctor thought it to be possible. But now I am dealing with loosing it anyway. So who really knows every tumor is different in every patient and every patient needs to be proactive in looking into whats best for them and ask the hard questioned from I say 3 doctors.

[jim j]

mcrue , How are you feeling now and do you have any other side effects?

[mcrue]

I'm doing well, all things considered. Thank you for asking. Except for some major tinnitus which I had before treatment, I also sustained significant hearing loss, fatigue, low energy, short-term memory loss, dull headaches. and some eye spasms. I also have minor balance issues while showering. I hope some of these side-effects will be transient and may improve with time. It's only been 6 1/2 months post Gamma Knife for me. I hope I might see some improvement in the next 5 years.

I should also mention that I'm 6'3" tall and 380 lbs , so my side effects may be more related to my weight rather than the  radiation treatment.

I read you had treatment almost 14 years ago in 2003. I would have thought they would have gone with translab approach for the best view of the facial nerve, since you mentioned your hearing wasn't the best. As you said, each case is different and it's natural to "Monday morning quarterback" with 20/20 hindsight. I'm not a doctor, but your tumor was very large at 5cm to begin with. I'm glad your facial nerve was saved and hope your quality of life improves.

Who performed your original microsurgery in 2003?
Perhaps some more experienced members of the forum can chime in, as I' m a fairly new member diagnosed  June 26, 2015.