Author Topic: Treatment is now recomended, HELP!  (Read 2024 times)

ash

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Treatment is now recomended, HELP!
« on: March 24, 2012, 08:08:12 am »
I was born deaf in my left ear and two years ago I was diagnosed with an acoustic neuroma in my right ear. It has grown to  8 X 4 X 4 mm from 6 X 4 4 mm in just last six months which it appears that it is now the width of the tube and is now growing lengthwise. My doctor now wants to use radiation which I think is the gamma knife. My symptoms are ringing with every once in a while is a stong ringing that lasts approximately 30 seconds and my hearing which has always been good gradually worsening. My understanding is that surgery carries a high risk of losing hearing along with facial contol. The other which is radiation is either gamma knife or cyberknife. Gamma is a single dose which this site expresses as retaining hearing 50 to 70 %. Everthing I read about cyber is it is several doses over days which have a much better chance of retaining hearing. I am leaning towards the cyberknife but it appears the drawback is that it needs several x-rays which is frowned upon to direct the sessions. I feel that with my loss of left side hearing already that I need to locate a top physician which has been extremely frustrating. I live in New Jersey and the only thing I found to referance is the US News top ENTs which the site is extremely slow. I have found only a few that even specify AN on there personal reports and the nearest are in NY. I have read that Dr. Chang in California is a top phsycian and uses cyberknife. My questions are what should their board certification be, many are different? Is there a way of locating physicians that use cyberknife? Who performs the radiadion procedures, the physician or the technician? If it is the technician how do I locate the top technician? I greatly appreciate any and all advice, Thank you.



Born deaf in left ear, Diagnosed AN in right ear 2/1/ 2010 4 x 3 x 2mm; 8/1/2010 4 x 3 x 4mm; 9/1/2011 6 x 4 x 4 mm; 3/1/2012 8 x 4 x 4mm; Recommendations: U of Penn-GK; Stanford-CK; NY-CK; Cooper-Novalis; Pittsburgh-GK; HEI- still waiting ; Treatment: Stanford-CK 5/10/2012 (Dr. Chang, Dr. Soltys)

Jim Scott

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Re: Treatment is now recomended, HELP!
« Reply #1 on: March 24, 2012, 12:41:23 pm »
Hi ~

Try registering at the CyberKnife Forum and use their search function to help locate N.Y. area doctors performing this procedure - along with lots of other useful information. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mindyandy

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Re: Treatment is now recomended, HELP!
« Reply #2 on: March 24, 2012, 12:47:50 pm »
My opinion would be to send your scans out to many different people such as Dr. Chang, & Dr. Medberry who are both highly skilled when it comes to CK. I would also send your scans to surgeons of your choice. You can send your scans to House in LA just to get an opinion. Its free so I would just keep sending out yours scans and get opinons this way you have choices and you can choose the right choice for yourself. There are many skilled professionals that are mentioned on this board.
Good luck and keep us posted. We are all here for you.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

PaulW

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Re: Treatment is now recomended, HELP!
« Reply #3 on: March 24, 2012, 03:08:44 pm »
The Neurosurgeon and the treatment planning team work very closely together.
Just like flying a commercial airline, there are some pretty strict protocols and guidelines that are followed to ensure your safety.

The treatment planning team essentially design a treatment plan to achieve what the neurosurgeon wants.
The treatment planning team double check it and the neurosurgeon has the final sign off.

I am not sure who pressed the go button on the CK Machine for me, but my neurosurgeon was present before and afterwards and I am pretty sure he monitored the whole procedure.   
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!