Gamma Knife in NJ

[Mlamb]

Has anyone had gamma knife done in NJ and would recommend their doctor?  My insurance is giving me unexpected problems and I no longer think Dr. Kondziolka and Dr. Golfinos are covered. So now I'm looking for a new doctor. I'm going to work on this insurance issue but in the mean time I'd like a back up.  I know Dr. Sisti has an office in NJ but he did my surgery and I was unhappy with the result of surgery and how he treated me afterwards. So anyone but him. Thanks everyone.

[mcrue]

I'd fight as hard as you can to get the doctor you want (Kondziolka) and avoid any regrets or second-guessing down the road. It's your brain after all.

Dr. K is world renowned.

[UpstateNY]

I would agree with mcrue.  If you want Dr. Kondziolka, see if you can negotiate with your insurance company to cover him.  I ended up taking the microsurgery route, but considered both NYU and UPMC (in Pittsburgh) when considering GK.  Both are within driving distance from NJ and viewed as top GK facilities in the country.

With my insurance company, NYU was considered out-of-network and UPMC was considered in-network.

I've seen on Facebook where some had good GK results at Valley Hospital in Ridgewood, NJ, but I have no experience with them so would wait to see if others respond.

[arizonajack]

Check out the following resource that's listed on the ANA website:

https://www.anausa.org/resources/medical-resources/medical-center-directory/39-menu-articles/medical-centers-1/160-njni-brain-tumor-center

[jim j]

I also have a Acoustic Neuroma. I had it removed via surgery in 2003 as it was large and pushing on the Bain Stem. 11 hrs later and 1 year after surgery felt at 60% the feeling was always there. I check with a MRI every 18months or so and it was growing back slowly.  Finally in February 2016 had Gamma Knife I wonder why why did this come back how. I lost my earring permanently and Balance from the 2003 surgery. I feel I lost the prime of my life at 39 and now I am 56 and doing it again.  Dr. Kondziolka, MD NYU Great dr.I am 3 months post Gamma knife and I am having a feeling of dizziness when i try to do anything. The other day it was so bad the Pharmacist knew me look at me and said you don't look well sit down and take your BP i took it and it was 174/104 I never had high blood pressure up until Gamma Knife. My head at times feels like someone took a blender and stuck it in there. that is how I descriptor it. I have real bad discomfort on that side. I called the Oncologist and he said its normal. But is it normal when my GP tested my blood and now I have Thyroid antigens in my blood meaning my Thyroid is asking up? Is it normal to have a high white cell count? Is it normal to have these debilitating feelings ? Does anyone have those answers I know I keep getting told normal but before I agreed to Gamme Knife the video they showed me was easy you walk in they do MRI crew a head frame on then zap your brain in 1 point with 6-8 radiation beams then you go to work the next day. Really??? What about 3 months later? No video on that??Anyone can you help???

[Mlamb]

Wow, James I just read your post. That is just horrible. I just had my gamma knife treatment with Dr. Kondziolka this past Thursday. I'm not feeling that great. My eyes are still swollen and my head feels funny. They do make it seem like it's pretty easy breezy and I'm sure for some people it may be the case. I also think that having had surgery prior makes everything worse. I am very worried about how I may feel in a month or so since symptoms seem to flare after some time. I'm hoping I'm one of the lucky ones. This takes such a toll on your life. I've been dealing with this for two years and like I said I just turned 40 and I am now recovering from not only brain surgery but also gamma knife. Has Dr. Kondziolka been good about helping you with the issues you've been having?  I was really torn between Dr. Kondziolka and Dr. Golfinos. Perhaps Dr. Silverman, the radiologist, can help or refer you to someone who can. This is the scary thing with anything revolving the brain, I iniw with my issues, I've gone to so many doctors and it seems like no one can help and I just have to deal with it. I get very upset when I think about how well I was prior to any surgery and it is the treatments that have caused me problems. Obviously, if I did nothing I would eventually have problems too. I wish you all the best.

[jim j]

MiamB, I thank you for your thoughts.  I just want you to know I think Dr. Kondziolka is a great Dr. and I also know Dr. Sen also at NYU. is one of the best Neurosurgeons. Dr Sen did my surgery and was so careful not to damage the facial nerve that is what brought me to NYU. I love that place clean and organized. The nursing staff top notch Dr. K also but I just feel that maybe it is my body and that I felt people should know that not everyone is the same. I myself am having a difficult time right now 4 months out my white blood count was going up every week for 5 weeks and just now is normal. I am having problems I have not read much about others having.  From what I have read there is not much research for long term post GK. But I just think everyone should be aware that we are all different and thus might have a different result. I feel that I have been strong and worked through much in life but this is a very hard time in my life with unexpected issue's. I wish you the best and hope and pray you feel better. I thank you again for your comments it helps sometimes as people don't see blood they assume all is good you know. Thank you Jim

[arizonajack]

Jim,

The reason tumors sometimes grow back is because the surgeons often have to leave little pieces of living tumor for some reason or other, like maybe part of the tumor is on the facial nerve and the surgeon wants to avoid messing up the nerve. That might have been the case with you. Read your op report to find out if that's what happened.

I would caution anybody who elected microsurgery to have MRIs at the 6 month and 1 year post op dates to monitor what's left of the tumor.

[jim j]

MLamb,This is Jim J I have not been on the site since April. I finally got feeling better May 23rd I remember that day. I am not sure if you found a Dr but I would also recommend speaking with Dr K at NYU and asking him to please work with your insurance if there is some way he can help you have heard so much about him and go on bringing up how great he is and his team. I would try it. If not there are some other great dr that do Gamma knife I know StatenIsland University Hospital I believe thats what it is called, had the first Gamma knife machine installed in the US I installed the building and rigged the machine in while I was working. look into them and loo at health grades and the Dr's listed there. Health grades and Vitals gives you the stars and a full view of the Dr's. I wish you the best and if you already had the Gamma Knife I hope all went well. Jim J

[DadwithAN]

My 77 year old father just had Gamma Knife at Valley Hospital in Ridgewood. He was diagnosed with an acoustic neuroma on the outer limits of "too big" for this approach. His doctor was Anthony D'Ambrosio. I would highly recommend this center. Every single person was fantastic. He had gamma knife for 73 minutes.

[jim j]

Arizona jack , I have a question? I had a large AN removed in 2003 and as I said it grew back in little by little over the years I knew they left 1 and I say 1 small piece left so not to damage the facial nerve. I just had Gamma knife on the smaller An that grew back I just had my 8 month checkup and I had some good news the tumor is dying it is black in color in the middle and white around the edges. That I was told is good. Then I was told but there was another piece which was never mentioned it was left on the facial nerve right were the nerve enters the brain stem. It was a Cyst that is now larger I was shock I said a cyst right near the brain stem and on the facial nerve yet it was also a piece the original tour that was left and they did not see on the last MRI??? I asked how was i not told there was a piece there and why would a Cyst that is larger then the AN was appear now after Gamma Knife? Has this happened to anyone? I was told this is rare and needs to be watch. When I asked why well more surgery then why did I due Gamma knife. All i ask has anyone ever had this happen to them? Thanks Jim