Author Topic: Recommendations? - Radiosurgery in Northeast  (Read 4500 times)

skier

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Recommendations? - Radiosurgery in Northeast
« on: October 26, 2021, 10:40:59 am »
Hello,
I have a newly diagnosed AN. I'm in northern New England.

I have a small tumor size, am 63 yo, v. good overall health, but I have had quite a few symptoms in last year (hearing loss, tinnitus, balance issues sporadically/slight, and slight, but sig. facial nerve involvement.) Tumor is still intracanicular, and about 15mm at the longest dimension.

One MD (ENT) has informed me I'm a candidate for radiosurgery. I'm taking some time to dig into the details, and I'm going for a 2nd opinion. Tentatively, I agree that radiosurgery may be right for me, overall.

Reading the forum discussion, I see many notes that point to Dr. Chang at Stanford.

Any opinions on excellent radiosurgery options in the Northeast or even, Midwest? Or maybe I can take a trip to California, but I'm a reluctant air traveler, at best. Still, I could do it.

Thank you for any suggestions. I am still in the overwhelmed and frightened stage where I can hardly believe this is happening.

(I've updated this post today, Nov. 12. I'm still pretty overwhelmed and frightened, but thank goodness for the resources on the ANA website as a whole. I particularly like the new videos.)

Thanks!
« Last Edit: February 13, 2022, 07:58:00 am by skier »

gbly

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #1 on: October 27, 2021, 09:14:47 pm »
skier,
Welcome and you found the right place to ask the questions.  I don't have a location recommendation, but you are the perfect size for radiation.  I did radiation about a year + ago and just wish I actually would have done it slightly sooner.  I did the WW too long and mine grew quick.  I just was not ready for surgery and with a higher success percentage with radiation I just couldn't get to surgery.

All of the facilities/locations you mention should have something fantastic.  I also know that Cleveland has a wonderful facility and you are not that far. 

Good luck and more will come on with good recommendations.
Keep us posted.
GB

donjehle

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #2 on: February 07, 2022, 04:06:27 pm »
Hi skier!

Could you update what you decided on and whether you had radiosurgery?  Also, where did you decide to have it done?

Sharing this could be helpful to the rest of us in the AN Community.

Thanks,
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

donjehle

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #3 on: February 11, 2022, 05:01:19 pm »
Thanks, skier, for your update.  Whether it's positive or not, it is what it is, and we need to walk along side of you in your journey.

I have had just the opposite experience of yours.  For me, two doctors have agreed on your #4 option: Consider RS surgery after the MRI shows growth.  But I'm seeking another opinion because I am not real comfortable with waiting for months since my symptoms have become much worse while I'm waiting.  But so far I have been given only one option.  And you have been given too many options!  At least you are in charge of your treatment choices (as difficult as that is).  I feel like I am not in charge of my treatment, and so, in a way, I envy you, even though you may not feel adequate to be making the decision.

If you haven't done so already, I would encourage you to watch as many of the ANA videos as you have time for.  They really are excellent, and the neurosurgeons and other specialists do a wonderful job of explaining the options.  Then if you do not like Translab surgery, you could choose to go with radiosurgery or surgery with a different approach.  Or you may be convinced that translab  is the best option for you.  If you choose to do radiosurgery, you can discover the pros and cons of doing Cyberknife or GammaKnife.  You can watch the videos where they explain the Cochlear implant, and then decide if it is something you would like.  You would also become familiar with some of the neurosurgeons on the other side of the country, and then you could decide whether it would be worth leaving New England and taking the risk of flying to Cincinnati or San Diego, Stanford or Nashville or Rochester or wherever.  I know for me, watching the videos helped me to clarify some approaches I definitely did not want and changed my mind on other treatment options.  But I really like the idea that you are in charge of your destiny and not someone else -- even though it is challenging for you.  It is your life, and while the neurosurgeons can make their suggestions, you are the one who has to live with the results, not them.  You do whatever you believe is best for you.

In terms of knowing who does a great job with Cyberknife in New England, you could do a search here in the discussion forums (in the search field above) and see what you might find.  Or another option is to find an ANA group that meets in New England.  With the pandemic, most groups are meeting over Zoom or Facebook.  There may be those in the support group who had radiosurgery in New England and there may be those who considered having it done in New England but went elsewhere.  It would be good to hear why some did (and who did their procedures) in your area and why some others did not have their treatments done in the region.  They might have concerns about some practitioners there.  I have found a support group to be very helpful to me.

Whatever you decide, I am rooting for you skier!
Don

 
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

TopGeekNJ

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #4 on: February 14, 2022, 09:23:02 pm »
Skier, I am located outside Philadelphia in Southern New Jersey. My doctors are at Jefferson and I am about to get GK done by Dr. Shi from Jefferson Radiation Oncology. He is one of the best in the tri state area.

gbly

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #5 on: February 16, 2022, 11:21:54 pm »
skier,
thank you for the update and great information coming in.

Like Don said, we will all be here as you go through the journey. 

I basically had similar options, but in the end I went with RS with Dr. Jaboin (Portland, OR).  However, I just found out that Dr. Jaboin has moved to Oklahoma if you are interested in doing that drive.  He is amazing and would be a good one to research as well.

I can tell you this in hindsight, I wish I would have made my decision sooner.  I was initially told to watch and wait, they grow slow, blah, blah, blah.
In less than a year I doubled and was told rapid growth.  I wonder if I would have RS'd it right away would it have been as bad?
Bad = facial issues cause it had grown onto the facial nerve.

I will never know, but I would say some additional input to help you make the decision.

I will say this as well. I didn't want to lose my hearing on the AN side, and was very nervous about the facial nerve.  When I watched videos and what not on RS, CK or Gamma, the % of success was incredible if not better then surgery.  Less chance of facial issues.  So I know in the end for me the RS was the better, cause I would have lost my facial nerve or if they tried to save it, I would have left over tumor and still would have radiated.

Just some of the things I think about and should I have not waited the year...never know but if this helps you decide what is best for you, I hope it helps.

GB

skier

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #6 on: March 18, 2022, 06:19:26 pm »
Thank you, GB.
I appreciate your comments, which are very helpful.

I am starting to feel that I'm knowledgable enough now to have some opinions on what I should do, myself, and I'm leaning towards Cyberknife radiosurgery, still, after a 6-month MRI.

I could change my mind, but that's what I think today. I still need to get a where and when, with whom, but I at least feel increasingly confident in that plan.

Hope all of you are doing well, and thank you for the support.
Skier

donjehle

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #7 on: March 19, 2022, 03:20:08 pm »
That is really great news, skier!

I am thrilled that you are feeling much more knowledgeable and confident!  It's okay if you change your mind.  Many do, and that is all right.  The important thing is that it is your decision and that you feel good with your decision.  That is much better than simply relying on someone else, even a neurosurgeon, to make the decision for you which can affect the rest of your life.  The where, when, and with whom will come, but I'm really pleased with the progress you have made!

Please keep us posted as you proceed.  We want to be alongside you on your journey.

Best wishes, my friend!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #8 on: April 17, 2022, 09:31:32 pm »
Skier,
Sorry for being offline for a month.
congrats on being where you think you are ready.  Also know I initially was in it for surgery and changed my mind while talking with the surgeon.  Even my husband was like what happened, I thought you were doing surgery.  The beauty is we have the right to change our mind!

So have you talked to the radiologist yet?  Any date and what type?

Every journey is different and needs to work for you. This forum is great to get everyones journey to help you make the decision for you.
So just asking if you have been able to move forward.  We are here to bounce ideas off of to help you come to your decisions.
GB

richcooks

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #9 on: April 19, 2022, 04:56:36 pm »
Best of luck moving forward after your treatment.  I had fractionated sterotactic radiation... in 2010.  My AN was discovered in 2003 as 1mm.  Tiny tiny tiny.  It grew 1mm a year and 2010 I too had to decide which treatment to do.  Oddly enough my brother discovered he had a AN at the same time as me.  I live on the Jersey shore.  Lots of Medical facilities to choose from.   I visited UPenn and others and did a lot of research.  The one thing that kept coming back to me was that you have a better chance to preserve hearing with Fractionated vs The Gamma Knife.  Reason being Gamma Knife is one big dose of radiation that results in collateral damage to health tissue.  Fractionated are smaller doses given over a period of time.  Any exposure to healthy tissue is at a lower dose and the tissue has time to recover before the next treatment.  I had to go five consecutive days for my treatment that lasted a total of 45 minutes each which included the prepping etc..  Here I am 12 years later with no issues other than the tinitus and some (not a lot) loss of hearing in my right ear.  My brother lives in Rochester NY and he chose Gamma Knife.  Lost his hearing in his affected ear.  What I learned was that you need to search out the doctor who does the procedure you want.  The expert at UPenn only did Gamma Knife.  After meeting with him and based on all the research I did I decided that I wanted Fractionated.   One of my questions to all of these guys was, " Does my Tumor make a good target for you to engage?"

donjehle

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #10 on: April 22, 2022, 03:36:15 pm »
Hi skier!

I am so happy you are 99% sure of having Cyberknife over the other treatment options.  You sure have made significant progress in coming to that decision.  And it is also okay if you switch to another treatment option at the last moment.  You would not be the first one who had decided on a treatment and then went with something else.  So, please don't stress about that.  You still have time to finalize your choice.

This is the place to ask others for options for CK in the northeast, midwest, or mid-atlantic states.  Hopefully, some others will give their suggestions.  But you can also search the forums.  For example, you could go to the Main page, find the Search button in the upper right corner.  And then type in "Geisinger" (or whomever you want), and there might be 11 posts or so about Dr. Geisinger (or whomever), and you can read each post to see what others have to say about him and the treatments he gives.

Maybe someone else can give you counsel on whom to contact.  My ENT doctor referred me to the neurosurgeon I saw at Emory, and the neurosurgeon said he would not recommend surgery, but rather GammaKnife (and that is not something he does).  When I sought a second opinion from the Mayo Clinic, they did it as a team, one who does surgery with one who does radiosurgery, so I would be covered with either treatment option.

But thanks for sharing, skier!  It is really good to follow you on your journey and to cheer you on!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

gbly

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Re: Recommendations? - Radiosurgery in Northeast
« Reply #11 on: April 29, 2022, 11:38:57 pm »
Skier,
Some great questions there, but I would say check with your insurance on how they want you to proceed, referral from doctor or just call and the facility will coordinate with your insurance.   Either way don't let them tell you no.  hahahaha, I get pushy when it comes to getting done.

Like donjehle said you have every right to change your mind and only you know what you will be happy with.  I will say I had zero issues after the RS and still recommend that a lot.  I have seen several entries in here about PA CK locations, but they might have been older.  The one other thing to note is some of the older inputs will not have the owner of that string online anymore, that's okay but know it might be challenging to get a response.  But it still gives you good info to help you make a decision's.

It sounds like you are willing to travel where you need to, to get the right treatment.  I would still recommend Dr. Jaboin in Oklahoma!  He was wonderful.

Few more weeks to go, and we are all here if you want to bounce the ideas off of us all.   
Good luck.

Skier, just found this post and looks like Philly area, good luck.
My personal gamma knife experience 1-24-13
« Last Edit: April 29, 2022, 11:43:39 pm by gbly »