ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Carolgre on September 14, 2017, 11:56:28 am
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Has anyone here had gamma knife treatment at NYU's Langone Center in NYC? What doctor did you have and what was your experience like? I recently met with Dr. Golfinos there who said he thought it was time for me to have treatment for my 2.0 cm and 1.6 meningioma. I am extremely fearful of what side effects of gamma knife treatment might be but his nurse told me that I will have the same side effects if I choose not to have the treatment. I'm between the rock and a hard place right now but I feel like I'm being pushed into gamma knife. I am going to get a second opinion beforehand though.
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I like the carpenter's proverb of measure twice and cut once. If you can't look at your MRI images yourself, why not get an independent set of measurements. This will confirm the original radiologist's measurements and all be done by the same radiologist at the same time. I say this since my radiologist reported measurements were all over the place (and very wrong). What's worse is that the neurosurgeon then passed on the first figure to the radiosurgeon. An error just propagated. The second set of measurements were very different and the radiologist report was "stable"!
In may case I'm lucky, since I independently measured the size and know exactly what is happening. See https://www.bicrad.com/blog/2017/2/28/a-radiologists-perspective-on-patient-access-to-electronic-health-records for some guidance on how to get an independent set of measurements.
Finally, given the slow growth, why not get a "final" MRI done in 5 months time?
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Dr. Susan Pannullo Director of Neurosurgical Radiosurgery at Weill Cornell 1305 York, NYC 212 746-2438. New York Presbyterian Hospital. She would be your 2nd opinion. This doctor and her staff are excellent.
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Yes, I looked up N.Y. Presbyterian Brain Tumor Dept. and saw the name of Dr. Susan Pannullo. I was very impressed by what I read about her, but I don't know if she takes my insurance or not (Empire Blue Cross/Blue Shield Mediblue HMO. I'm going to call her office on Monday to see if a) she does take my insurance and b) is she accepting new patients. I know NY Presbyterian is in my plan but I don't know if this particular doctor is.
I am in a panic mode right now because I showed a CD of my two most recent MRI images to my PCP (as well as the neurosurgeon earlier in the week.) They both said that although currently there is minimal mass effect, the M is getting closer to my brain and doesn't have much more room to grow. Although the neurosurgeon didn't say so, my PCP said not treating could result in death. I now need a second opinion fast.
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I just saw Dr Pannullo. She's wonderful. I'm sure she's taking new patients. I have Medicare and empire as my secondary. I'm guessing your insurance is fine. They are very efficient in that office. Ask for Antonett. She's her coordinator. Good luck. Oh, Drs Stieg and Selesnick did my surgery. Now Dr. Pannullo is following with serial MRIs as the 5% left in my facial nerve can grow..in that case I would need radiosurgery. Stay in touch.
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Your message to me was a blessing and came just when I was feeling like things were hopeless. I am going to call Dr. Pannullo's office first thing Monday morning and see how soon I can get an appointment. The first neurosurgeon I saw told me that he, too, recommended gamma knife, but I just didn't feel comfortable with him. I was trying to put if off for another year to see if my tumor continued to grow. I had been told though that it is getting closer to my brain and it's really at the limit of how much more it can safely grow before I start having some serious problems. I didn't want to rush into something if the tumor should stop growing. Now I'm pretty much in panic mode based on information my internist gave me yesterday about the dangers of waiting. I hope to see Dr. Pannullo as soon as possible, and if she, too, recommends gamma knife, I'm now ready to set the date. I just hope and pray I don't have to wait 6 weeks to get an appointment with her. Thank you so much for your message/s to me. I can't tell you how very much I appreciate them. You have given me hope again.
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My tumor has reached the brainstem and is well and truly displacing it. I don't have any brainstem compression symptoms. (Just slight hearing loss and altered taste on the right side of my tongue.)
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Has your doctor recommended surgery or gamma knife? Mine is approaching my brain and the doctors I've seen so far have been painting all kinds of horror stories; i.e paralysis of the throat, losing my ability to swallow, vision loss, etc.
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The neurosurgeon recommended surgery (retrosigmoid), the LINAC radiosurgeon recommended radiosurgery (but only fractionated!), the ENT recommended surgery (translabyrinthine) and the Gamma Knife radiosurgeon recommended ... surgery ... but would do Gamma Knife if I wanted.
Take a look at images of vestibular schwannoma on the web and you can see how much brainstem compression there can be. I've only researched vestibular schwannoma so can't comment on how meningioma would differ.
My facial nerve is stretched enough to go around a 2.5 cm tumor, and there is little deficit.
Brainstem compression can results in ataxia (affecting movement on the opposite side of the body to the AN) and obstructive hydrocephalus. To get throat paralysis, loosing ability to swallow, there would have to be significant pressure on the lower cranial nerves (IX, X and XII).
I would talk to several other doctors.
I'm not a doctor, so check anything I've said independently with several doctors. Also, my research is based on an AN, not meningioma
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That's why I don't know if the doctor/s are trying to scare me or not. I'm told that if I don't something about my meningioma soon, I could die because of the inability to swallow. I'm in panic mode and are trying to do things too fast. I just don't know what's right but I'm terrified.
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I would talk to more doctors. Start afresh without any prior opinions - you want to get independent opinions. Get referrals form whoever referred you to the first doctor or from your PCP.
It would be great to select doctors that err on the side of conservatism, but how do you find such doctors?
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Right now I am waiting for a call back for an appointment with a highly recommended specialist at N.Y. Presbyterian Hospital. She is a strong proponent of Gamma knife and whatever I wind up deciding, I really would like to meet with her and get her opinion before proceeding. I was assured they should be able to get me an appointment with her sometime next week. It's just this waiting especially since my other doctors have basically told me to get this taken care of sooner rather than later. I feel like I'm on borrowed time.
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I would listen to the specialists and not the PCP as they are more likely to have little real knowledge of ANs and meningiomas.
Even some ENTs don't have vast knowledge either. Keep looking for your treatment and drs. I am thinking I have heard more of surgery than gammaknife. Just my own thoughts. Cheryl R
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Has anyone had gamma knife done by John Golfinos Langone? What did you think of him?
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You wo t necessarily have gamma. There are 2 other types. Dr Pannullo uses all 3. And will recommend the most efficient one for you. Your PCP is just covering his or her ass. Listen to your neurosurgeon/radiosurgeon they know best. Call Dr. Pannullo again and get that appointment. Regards, Joan
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Dear Joan:
I now have an appointment with Dr. Pannullo for next Tuesday. I know there are three types of radiation treatment: Gamma, Cyber or Fractionated stereotactic radiosurgery. I don't know which one she is going to recommend, but I really hope it's not the one with the dreaded head frame. Whatever she recommends though, I think she'll be the one I have the procedure done by as I've read wonderful things about her.
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Hi please know that Dr Pannullo is not an alarmist. She may tell you to wait 3 months for another MRI or she may tell you to do radiation ASAP. She's so good at what she does. You know that just by looking up her accomplishments. Good luck on Tuesday. By the way her nurse Kristen is also amazing.
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cgreen2495 (cgreen2495@aol.com)To:info Details
Hi, Joan:
I met with Dr. Pannullo yesterday and she was wonderful. I loved her and felt very comfortable. She said I could just have another MRI and see if it grows or not. She did say, though, that it has gone from a small tumor to a medium tumor and that it is better to treat before it gets any bigger. She wants to do fractionated stereotactic radiation surgery (no headframe and no cutting, thank goodness). I told her that my previous neurosurgeon has told me I had multiple symptoms I wasn't even aware of. She checked me over and, except for the hearing loss, could see no other deficits. She said the tumor might continue growing or even reach a plateau and stop and if it does grow, we don't know in which direction. Being that it is now very close to my brain, I have decided to go for the procedure rather than wait until it possibly does encroach upon my brain at which time it will cause problems.
Thank you so much for recommending Dr. Pannullo. She didn't try to scare me, she presented my options in a very reasoned and calm manner and, again, she is a doctor with whom I feel comfortable. I'm waiting to hear back from her surgery scheduler re my total cost for the procedure and then I'll make an appointment to meet with her oncologist. Dr. Pannullo said it is not an urgent matter so I'll probably have it done sometime before the end of the year.
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Hi So glad you were pleased with Dr. Pannullo. She's not one to sugarcoat but tells it like it is. If she says you have time then she means it otherwise you would be having radiation ASAP. Keep me posted on your journey. All the best to you. Oh, the deli next door to Weill Cornell is excellent. I had the best lunch!