Author Topic: Help! Any recommendations at Johns Hopkins?  (Read 2959 times)

CC

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Help! Any recommendations at Johns Hopkins?
« on: August 10, 2005, 03:50:28 pm »
I posted below asking for doctors in Washington DC.  However, a friend who is a doctor has recommended I would be better seeing someone at Johns Hopkins in Baltimore as they have more experience with AN.  Can someone tell me what Johns Hopkins is like and recommend a doctor or two please?  My growth is large (1.8x2x1.5cm) and I have no symptoms but slight loss of hearing and pressure.  I am however worried sick that doctors keep hammering the words "large" and "serious" and "make sure you get the right doctor" at me.  I just want to see a good doctor or two and find out what the options are.  Help please!  I am an Australian living in  Washington DC without any family here except for my now very worried husband so hope someone in this group can help us with recommendations and information.
CC
3cm AN
CK Oct 05
with Dr Chang at Stanford

jamie

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Re: Help! Any recommendations at Johns Hopkins?
« Reply #1 on: August 10, 2005, 04:14:47 pm »
Those dimensions are not of a "large" tumor. That is on the lower end of medium. Don't rush into anything, explore all your options, you have many available to you for a tumor that size. Look into radiosurgery, with gamma knife or cyberknife, check out these websites: www.anarchive.org and www.cyberkinfesupport.org . Don't panic! That is not a large tumor, you have plenty of time to make the best decision. Feel free to message or email me with any questions you may have and I'll do my best to help.
« Last Edit: August 10, 2005, 06:37:31 pm by jamie »
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

GM

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Re: Help! Any recommendations at Johns Hopkins?
« Reply #2 on: August 10, 2005, 08:26:07 pm »
I absolutely agree with Jamie!  I calculate it out at 1.77 cm ...that's smaller than my original 1.8 cm tumor that I had treated with Gamma Knife.  You tumor is considered small to medium sized.  You have plenty of time to figure out what you want to do...DO NOT rush into anything especially if the only symptom is hearing loss!  :o  Here is your first lesson with your AN and doctors...sometimes we disagree with them, welcome to the club.  Are these surgeons?  Sometimes surgeons will rush you into surgery, my original ENT Doc was a surgeon and wanted to rush me into Translab.  Take some time to do research on the method that is best for you: "Watch and Wait", "Surgery", or "Radiosurgery."

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

CC

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Re: Help! Any recommendations at Johns Hopkins?
« Reply #3 on: August 11, 2005, 07:42:20 am »
Thanks awfully for allaying my fears.  Given this is a steep learning curve I guess once I recovered from the shock I just took the ENT's words literally.  I am really glad you think it's not large - I guess less complications that way (hopefully).  I have an appointment with a surgeon on Aug 26 but am also going to see someone at Johns Hopkins and then ask the House Ear Clinic's doctors for their advice.  Ultimately I just want the whole thing resolved but appreciate your wait and see advice and will do just that - along with a whole lot of research.  For now I'm putting the whole thing behind me for two weeks and going on a pre-planned hiking trip of New England.  Thanks again - I will look at those sites and post further if I have questions. 
CC
3cm AN
CK Oct 05
with Dr Chang at Stanford

jamie

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Re: Help! Any recommendations at Johns Hopkins?
« Reply #4 on: August 11, 2005, 12:17:05 pm »
Be sure to get a radiation oncologist's, or a surgeon who also uses radiosurgery's opinions also. Any surgeon who does not also treat with radiosurgery WILL recommend surgery, it's how they make their money, so if they think you're healthy enough to survive brain surgery, they will strongly recommend it. On the other hand, a radiation oncologist who only treats with radiosurgery, WILL recommend radiosurgery, unless there is brain stem compression or symptoms so severe they can only be alleviated by removing the growth (I prefer growth now to tumor, the word tumor makes one think of cancer automatically when I tell my friends I have a tumor, they freak out, and these growths are not cancer, just a spontaneous abnormal growth of schwann cells, kind of like a wart as my radiation oncologist says). Just remember, all doctors will push their trade, and unfortunately, it seems many use scare tactics to make a patient feel they are in immediate danger, and only that doctor can save them. Keep in mind radosurgery stops the tumor from growing, and usually after time it shrinks, but the key is it stops growing and can do no more harm, there is no incision or recovery time. Surgery removes it, but not always completely, so it can grow back again, and there is alot of recovery involoved and many possible complications, long and short term. As a personal view, I can't understand why anybody would choose surgery for a growth within radiosurgery size range and not causing compression, sure the growth is not taken out, but it's not an alien, it's your own cells, the same cells that cover all your nerves, just a greater accumulation of them on one nerve. Neither treatment is 100%, but both are pretty close, and share similar long term control rates, so why have your skull opened and endure pain to remove something you don't know is there?
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Louis

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Re: Help! Any recommendations at Johns Hopkins?
« Reply #5 on: October 17, 2005, 12:03:20 pm »
If you are looking at JHU you should contact Dr. Henry Brem and Dr. Michael Holiday.
Louis