Author Topic: Second "enhancement" in the vestibular region!  (Read 3408 times)

anothereveryman

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Second "enhancement" in the vestibular region!
« on: May 08, 2014, 01:28:14 am »
I mentioned here some time ago about an intracochlear schwannoma that has made me completely deaf on that side with loud tinnitus. A recent MRI has also shown an "enhancement" in the nearby vestibule. The ENT I was referred to was dismissive and rude about any treatment options, and frankly didn't seem very professional at all.

I was told to "wait and see" by someone I trust a lot more at House Clinic, where I mailed the MRI results like I did for the previous results a year before. However, I'm starting to get persistent, daily sensations of dizziness and imbalance when I walk. It is subtle and I can still walk, but it is a noticable "lightness" and sense of false momentum on the tumor-laden side. I'm frightened and feel that I may not be doing enough.

I guess I wanted to come here for insight into this. Should I continue to just "wait and see"? I already notified the local general practicioner about my desire for a new appointment but it's over a month away to hear anything back from them. I hope I'm doing the right thing.

Echo

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Re: Second "enhancement" in the vestibular region!
« Reply #1 on: May 08, 2014, 06:35:29 am »
I suspect if there was a need for treatment the Dr.s, at House would not be telling you to wait and watch.  From what I've read about House on this Forum they seem to be exceptionally good and you already trust the Dr. you are speaking with there.   You also have time while you wait to request a few more consults which would probably help calm you down and help you find a specialist you would be comfortable remaining with. 

Keep a log of your symptoms and if you notice a drastic change while you are waiting for your other consults you can always get in touch with the Dr. at House and let him/her know about your change in symptoms and your concern. 

You are being proactive, and that's a good thing!  Perhaps your GP could refer you to someone who specialized in Vestibular rehab to help you with your balance issues. 

Best of luck.

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Ruthie Mac

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Re: Second "enhancement" in the vestibular region!
« Reply #2 on: May 08, 2014, 10:02:01 pm »
I would suggest sending your MRI to as many Doctors as possible for more opinions. While I do think the House Clinic is fabulous, why not use the 'wait & watch' time to continue your research...my balance and walking issues were what lead me to seek treatment - it started out gradually but escalated quickly and is now the hardest part of my recovery post-radiation - I wouldn't waste any time trying to get the best diagnosis and treatment.
Ruthie
4/1/2013  1 cm x 1.6 cm left ear
11/1/2013 SRS Varian Trilogy UMass Medical (4 sessions)
hearing is still good, slight tinnitus, working on balance issues

anothereveryman

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Re: Second "enhancement" in the vestibular region!
« Reply #3 on: May 08, 2014, 11:49:18 pm »
I would suggest sending your MRI to as many Doctors as possible for more opinions. While I do think the House Clinic is fabulous, why not use the 'wait & watch' time to continue your research...my balance and walking issues were what lead me to seek treatment - it started out gradually but escalated quickly and is now the hardest part of my recovery post-radiation - I wouldn't waste any time trying to get the best diagnosis and treatment.
Ruthie

I have done this much. There's a network of medical providers that I gained through a family coverage program called "MedExpert" and they have provided contact information for some time now. I mailed them a copy of the MRI and they said they are looking into "third opinions", though it's been a while and I haven't heard back yet.