Author Topic: 29mm and don't want to do surgery :(  (Read 1846 times)

Bomberman

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29mm and don't want to do surgery :(
« on: September 05, 2016, 09:25:24 pm »
Hello,

I'm new, I was diagnosed on Aug 20 (today is Sept 5) with a 29mm AN at it's largest dimension. I am scheduled to have my first discussion with Dr. Sisti of NY Presbyterian this Thursday. I have also sent my reports and images to Dr. Timothy Chan in Sloan Kettering to try to schedule and appointment with him as well. I am also trying holistic acupuncture and eating AHCC herbal pills to try to buy me some time to make a good informed decision. Although I am not sure that it will do anything. I'm up for anything at this point. Even though I haven't met with Dr. Sisti yet, I talked to his nurse who already knows what he will recommend me. That is surgery plus GK afterwards. I don't want to do surgery because it seems the chance of hearing loss is great. I am also afraid of future complications afterwards. Right now I have slight hearing loss, maybe less than 10%, and a little tingly in my lip and tongue. My question is, should I push towards only radiosurgery instead of microsurgery? I hear that GK can still do up to 3cm sizes which I am at the borderline. If GK can do up to 3cm why would the surgeon recommend surgery? I want to see if Dr. Chan would be fine with just even fractional radiation to make it shrink over time. Can anyone who has been in my situation before give me advice?

My wife is expecting our first child in a few weeks as well. In the light of this, when is the best time to do the operation? Would one month after his birth be too late?

Also who are the best doctors/surgeons to deal with AN in the NY tristate area? Thank you in advance!
« Last Edit: September 05, 2016, 09:43:26 pm by Bomberman »

Mlamb

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Re: 29mm and don't want to do surgery :(
« Reply #1 on: September 06, 2016, 06:15:05 pm »
Hi there. Perhaps you should get an opinion from Dr. Kondziolka at NYU. I had a trigeminal schwannoma, same type of tumor but on the trigeminal nerve, that was 3 cm. Dr. Kondziolka had recommended Gamma Knife but I was worried it was too big and ended up having a 10 hour surgery with Dr. Sisti .  Dr. Sisti left a very large residual behind that I had to treat almost within the  same year. After meeting with more neurosurgeons and getting advice from Dr. Schwartz at the House Clinic and Dr. Chang at Stanford I had Gamma Knife with Dr. Kondziolka this past April. Any issues that I have are a result of the surgery. I was really worried that I would have more issues post gamma knife but luckily there have been no post treatment side effects. Dr. Kondziolka was amazing. Best of luck to you.

Bomberman

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Re: 29mm and don't want to do surgery :(
« Reply #2 on: September 06, 2016, 09:24:49 pm »
Thank you I will see if I can set up an appointment with Dr. Kondziolka. When you go to ask for Doctor's opinions, do you just show them the images and they will analyze it carefully before talking with you?

SP

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Re: 29mm and don't want to do surgery :(
« Reply #3 on: September 07, 2016, 03:03:36 am »
I know its a really stressful diagnosis to receive - but typically this is a slow growing tumor & that means there is time to consider your options here.
Your symptoms sound similar to mine (I also have facial numbness); my tumor is also considered big: ie over 3.0 cm. After all the heartache of searching for the right treatment for me i decided on CK with Dr Chang & Dr Soltys at Stanford:
https://www.anausa.org/smf/index.php?topic=22640.msg979769729#msg979769729

Please keep in mind that both CK & GK cannot gurantee hearing preservation; since the tumors proximity to the cochlear is a factor and this can be adversely affected by the radiation. I still have usable hearing in my affected ear - but cafes and restaurants can be challenging-  it has declined since treatment . I'm currently waiting for my 12 months results review from Dr Chang ... I'm feeling well & have been told locally that things look stable and another MRI is thankfully not due for at least 6 months!

Best of luck with your decision and of course on the upcoming arrival of your little one.

Stella

2.9 cm Left-side AN (Aug 2018)
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

caryawilson

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Re: 29mm and don't want to do surgery :(
« Reply #4 on: September 11, 2016, 12:45:33 pm »
I would want to know the stress on the other nerves. For example, tingling on the tongue may infer to stress on nerve 9 or 12, Glossopharyngeal or hypoglossal, respectively.  Keep in mind, no option is zero risk. Normally tumors expand in the process of dying after radiation for up to a year and surgery will stress the nerves.

I apologize if I'm adding stress, but I would ask the doctors the risk they see on the other nerves
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

 


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