Author Topic: Intravestibular Schwannoma  (Read 1475 times)

Eebs

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Intravestibular Schwannoma
« on: September 27, 2024, 05:18:44 pm »
Hello Everyone,
I am a newbee. I have been diagnosed with a 3mm Intravestibular Schwannoma and am told it is in the Vestibule only (the bony part of my left ear) The Neurotologist I saw did not impress me. He was a little dismissive, said I was lucky to have mine in this location (I don't feel lucky at all). He is adamant that no one will do surgery on me at this point, even though I did not ask for surgery. He says surgery would result in complete loss of hearing and I would have lasting balance issues after. He wants to wait and see. I am 64 years young, have hearing loss, balance issues, dizziness, a constant headache, ear pain, ear cracking sounds and terrible pulsatile tinnitus. I have an appointment with another Neurotologist/Otologist at the end of October at a facility in Raleigh NC. that my Neurologist referred me to. Does anyone know of this type of tumor?  I can find very little information about it. I am concerned that waiting too long would result in me aging out of a time of my life when I am still young enough for better outcomes but on the other hand I hear the Neurotolgist say I will completely lose my hearing and some balance forever! I am healthy, eat a very healthy diet, walk 3-4 miles almost every day. Play pickleball and babysit my 2-1/2 year old granddaughter 3-4 days a week. I'm not ready for all of these issues which I could have with or without surgery (some I already have) Need some advice.  Thanks for listening to me vent....

DanFouratt

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Re: Intravestibular Schwannoma
« Reply #1 on: September 28, 2024, 02:02:31 pm »
Ebbs,

Just so you know I am not a doctor but if you have a Tumor I would go an see an ENT.  I am a fan of Dr. Brown at UNC and many in the area are fans of Dr. Cunningham at Duke.  If you are going to Raleigh these are two good options within your striking distance for the tumor. Warning, surgeons are not fans of radiation. I was 62 years young last year when I went with radiation. I did not want to get any worse and radiation made sense to me. I recommend Dr. Brown who was not happy with my decision but was part of the radiation protocol team and still sees me for follow ups. If you want to talk more I am in the area.  My email is Dan4att@gmail.com.

Good luck on your decision journey and reach out as often as you need.

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

Eebs

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Re: Intravestibular Schwannoma
« Reply #2 on: September 28, 2024, 03:42:44 pm »
Thank you Dan. I appreciate your response. A Neurotologist is a surgeon who specializes in these types of tumors. I had been to 5 ENT's in the past for my tinnitus, headaches and dizziness. Two of them said to live with it and the others just basically ignored my symptoms because I was in for chronic rhinitis. Long story...so the ENT's for me were no help at all.  I'm happy you have had success with your tumor. I mispoke when I said Raleigh. It's actually Winston Salem Dr. Gandalfi at Atrium Health Wake Forest and I am looking at Duke and the Cleveland Clinic for another opinion. I'm not sure I am a fan of radiation as it does not get the entire tumor. I am on a mission to find the best solution for me.  I have a Nurse Practitioner friend who is no longer practicing but stays licensed and she is a huge fan of Universities for their research, education and being on the cutting edge of technologies and science.   I just wish there was someone on here with a tumor in the same location as mine.  Have a wonderful evening and thank you for taking time out of your day to chat with me.