Author Topic: New Facial Nerve Schwannoma diagnosis  (Read 5024 times)

ANSydney

  • Hero Member
  • *****
  • Posts: 630
Re: New Facial Nerve Schwannoma diagnosis
« Reply #15 on: March 07, 2017, 09:47:05 pm »
Citiview, I certainly hope there are new interventions in the pipeline. The current outcomes following intervention is unacceptably poor. I can't think of anything revolutionary that has happened in the past 30 years (nerve monitoring during surgery was probably the last significant development and that was introduced about 30 years ago and gamma knife was introduced almost 50 years ago).

I think we're due for the significant revolution in acoustic neuroma treatment (perhaps pharmacological or MRI guided focused ultrasound). Complication rates less than 1% would be where to be.

Blw

  • Full Member
  • ***
  • Posts: 178
Re: New Facial Nerve Schwannoma diagnosis
« Reply #16 on: March 07, 2017, 10:06:26 pm »
Thanks for all of the information everyone. I just came home from meeting with Dr. Jason Sheehan at UVA. He also said I am alright to wait six months for another MRI, but he seems to think it WILL require intervention at some point and in his opinion, the sooner the better. His official diagnosis is a Facial Nerve Schwannoma even though I am not typically symptomatic at this time. That is strictly based on the MRI results I received closer to home that revealed the tumor in the first place.

I have a meeting with JHU later in February for another opinion. With what I have read online and here, Gamma Knife appears to be the treatment of choice in order to save facial function.

To be totally honest with everyone, my fear that this is NOT benign but is a malignant cancer has me torn in pieces. Certainly I can understand that it is my anxiety taking control but if I could just have a sense of peace that this is benign, I think the overall experience would be so much better. I mean, yes, I have a tumor, but there is information out there that tells me that as uncommon as it is, there is hope. I just cannot cope with the fact that it could be aggressive or malignant even after review from three surgeons and all telling me that it is most likely benign.

I am a Christian who has totally put my eternal soul in God's hands but this weakness I feel toward this tumor is so painful. I do not question my eternal home, but I question the strength of MY faith in God that before now, I was totally confident of.

Sorry to rant and thanks again for all the replies. It helps.

Sheehan was my doctor, and his team is fantastic. All MD/PhDs. He answered any email at all times of the day. He also trained with Lundsford at Pitt who is the best for gamma knife. If you go the gamma knife route, UVA is excellent. I made my choice based on all of their publications. Sheehan is very active in the field.

mrwva17

  • New Member
  • *
  • Posts: 16
  • Romans 5:8
Re: New Facial Nerve Schwannoma diagnosis
« Reply #17 on: March 08, 2017, 05:27:25 am »
Thanks for all of the replies folks. I appreciate all of them.

Blw - I agree about Sheehan. If I were to go with a treatment involving GK, that is where I am going.

ANSydney - I have had one symptom for nearly ten years now. The only symptom I have ever had has been episodes of imbalance that normally correct themselves after a period of time. I have also had tinnutis for as long as I can remember but it has never been a nuisance to me. I have had diminished left side hearing since the age of 17 based on audiogram at that time but I believe may even be tied back meningitis back at age 7.

Citiview - I am sure about the quality of care given by MEEI/MGH, etc. I would have no problems with surgical intervention there if needed. You hit the nail on the head for me. What happens in 10, 15, or 20 years time? No guarantee really with any treatment method.

So I watch and wait. Seems clearly the best choice for me at this time.

Thanks again all!

Mike
4mm X 1.2cm at initial dx 1/17/17
Increasing balance issues since 6/17

 


anything