81
Facial Issues / Re: Do I have hope after 6 and a half months?
« Last post by GatorMan on October 20, 2025, 10:57:06 AM »Very happy for your progress Waleed!! 
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82
Microsurgical Options / Anxious, considering Stanford for retrosigmoid approach.
« Last post by G Marioni on October 16, 2025, 11:40:49 PM »I was diagnosed with a vestibular schwannoma in November of 2024. Size about 18x15mm. Besides tinnitus I have some hearing loss but no change in hearing from initial diagnosis. I have had one balance related episode. To preserve the hearing I have and avoid additional symptoms I am considering the rectosigmoid approach for treatment at Stanford by a team led by Dr Jauna Carlos Fernandez-Miranda. I do have opinions from two other facilities; those surgeons basically recommend a similar approach. I am very anxious about all this and would like to know if anyone has had experience with Stanford and Dr Fernandez-Miranda that they would be willing to share.
Thank you
Thank you
83
Inquiries / Re: Mayo for Treatment/s
« Last post by bfoley on October 16, 2025, 04:49:44 AM »Sorry for the delayed response hypothesisgrumpy. Just seeing this. I would have to say I did not require help with the transition in the direction of care. After learning that the part near my brain stem was continuing to grow, I knew it had to come out. While they supplied materials regarding surgery and aftercare, I leaned more on this website for support in what to expect and how to prepare.
There are minor after effects of surgery, but nothing major. Eventually is has become a new normal. And the best part is that since my check up this year, they said I don't have to have another visit or MRI for 5 years!
There are minor after effects of surgery, but nothing major. Eventually is has become a new normal. And the best part is that since my check up this year, they said I don't have to have another visit or MRI for 5 years!
84
For those in the 'watch and wait' status / Re: Diagnosed with VS , What to do
« Last post by DanFouratt on October 15, 2025, 08:12:39 AM »Hello and welcome,
I was like you had a rather small tumor, hearing loss, tinnitus and a little older when it was discovered. I stayed in the watch and wait for several years. When it grew a little I made the decision to treat it. Not that my symptoms changed from the growth it was that I did not want further issues (balance). These are all personal decisions and that was mine. I could have stayed in the watch. My ENT was fine with not doing anything. However when I decided to treat it he is a surgeon hence the push for surgery. After doing research I choose radiation as the best path for me. (If you want the research please email me dan4att@gmail.com).
VS are interesting as the patient makes some of the major decision. When to treat it. How to treat it (surgery/radiation). The best advice I received from a Doctor in the research is, "No decision is bad, make the decision you are comfortable with and more forward, do not second guess yourself."
Good luck on your decision journey,
Dan
I was like you had a rather small tumor, hearing loss, tinnitus and a little older when it was discovered. I stayed in the watch and wait for several years. When it grew a little I made the decision to treat it. Not that my symptoms changed from the growth it was that I did not want further issues (balance). These are all personal decisions and that was mine. I could have stayed in the watch. My ENT was fine with not doing anything. However when I decided to treat it he is a surgeon hence the push for surgery. After doing research I choose radiation as the best path for me. (If you want the research please email me dan4att@gmail.com).
VS are interesting as the patient makes some of the major decision. When to treat it. How to treat it (surgery/radiation). The best advice I received from a Doctor in the research is, "No decision is bad, make the decision you are comfortable with and more forward, do not second guess yourself."
Good luck on your decision journey,
Dan
85
Archives / Re: Gamma Knife Confirmed at Tufts Medical/Boston
« Last post by MistyRodriguez on October 15, 2025, 05:03:58 AM »That link is outdated. New link is: http://www.tuftsmedicalcenter.org/OurServices/SpecialServicesandCenters/BostonGammaKnifeCenter/defaultThank you so much
86
For those in the 'watch and wait' status / Diagnosed with VS , What to do
« Last post by And147159 on October 14, 2025, 01:03:59 PM »Hi
I am 54 YO now and was diagnosed with VS (6mmx8mmx5mm) in March 2024 with a hearing loss and tinnitus. Follow-up MRI in Nov 2025, and size is (6mmx9mmx5mm), and again in Oct 2025, and size is (7mmx12mmx5mm). My doctor says it is a baby size, but he is pushing to get treatment (mostly radiation). Not sure what to do.
My question is, if it's a baby size and grows slowly, then why to rush for the treatment? Hearing is deteriorating, and tinnitus is not bothersome. I have another appointment for a second opinion in a month.
Can someone advise on a better approach?
I am 54 YO now and was diagnosed with VS (6mmx8mmx5mm) in March 2024 with a hearing loss and tinnitus. Follow-up MRI in Nov 2025, and size is (6mmx9mmx5mm), and again in Oct 2025, and size is (7mmx12mmx5mm). My doctor says it is a baby size, but he is pushing to get treatment (mostly radiation). Not sure what to do.
My question is, if it's a baby size and grows slowly, then why to rush for the treatment? Hearing is deteriorating, and tinnitus is not bothersome. I have another appointment for a second opinion in a month.
Can someone advise on a better approach?
87
Facial Issues / Re: Do I have hope after 6 and a half months?
« Last post by WALEED KHALID on October 12, 2025, 06:41:27 AM »Hello, I don't know enough about your surgery/treatments to tell how much your nerves were damaged so I don't know if this is of help or not. I had my surgery in 1992 and the my facial nerve was severed because that was where my tumor was. They told me it would take 6 months for the nerve to regenerate before I would see any movement, they were correct. If your nerve was damaged but not severed I assume it wouldn't take so long for you to notice movement. Good luck to both of you! Jill MarieThe nerve was not cut, but it was affected during the surgery, although before the operation, my facial expressions were working normally, and now I have completed 10 months of the operation and I have not received any treatment only in the first week of the operation, and sometimes I take vitamin B12 and I began to be able to tighten the angle of the mouth and smile 2 or 3 millimeters, but a very small movement, as well as the eyelashes at the bottom, it seems to move 2 millimeters, although the upper eyelashes vibrate with healthy eyelashes, and the tears returned excellently as well as my lower lip became normal, my question to you, is, does my smile develop and close my eyes in the coming months
88
Facial Issues / Re: Do I have hope after 6 and a half months?
« Last post by WALEED KHALID on October 12, 2025, 06:40:35 AM »Did you ever get any movement? I’m at 6.5 months and not better tone but no movement.I have now completed 10 months and I have begun to be able to tighten the corner of the mouth and smile 2 or 3 mm, but it is very off, as well as the eyelashes below, they seem to move 2 mm, although the upper eyelashes are shaking, I hope we have a lot of developments, doing exercises and massage do not lose hope
89
Hearing Issues / Re: Pitch Changes and Musicians
« Last post by ESH on October 08, 2025, 04:56:08 PM »Singing--ah, there's the rub. I find I am no longer singing in public. I can do ok if I half-cup my hand over my mouth and direct the sound to the good ear, but I can't do that in public. I just don't trust my voice right now. I keep hoping I will figure out how to adjust.
90
Physicians / Suggestions on where to get gamma knife treatment
« Last post by Mulberry56 on October 07, 2025, 02:26:38 PM »Good afternoon,
Trying to determine the best place to have a gamma knife treatment.
Live in Buffalo ny, wondering about Cleveland Clinic vs Roswell .
Anyone with experience at either facility?
Thank you!
Trying to determine the best place to have a gamma knife treatment.
Live in Buffalo ny, wondering about Cleveland Clinic vs Roswell .
Anyone with experience at either facility?
Thank you!