ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Bellium on April 07, 2016, 07:02:55 pm
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Hi everyone,
I am writing this post because a similar post helped me right after being diagnosed. Now it's my turn to help someone else in the same situation.
Here's my story
In March 2011, I woke up with "congestion" in my left ear. As the day progressed I experiences tinnitus and hearing loss. Interestingly enough, this had happened to my brother 4 years earlier and I realized it could be a medical emergency. I called my ENT and left work for a visit. A hearing test showed profound hearing loss. He prescribed me steroids and one week later my hearing returned to normal - I was diagnosed with sudden sensorineural hearing loss and that was that. I was never sent for an MRI.
Fast forward to November 2015. I was on maternity leave with my 9 week old daughter and I woke up with left sided facial numbness. I followed up with my primary physician immediately and she recommended andMRI and a neurology visit. The MRI on 11/18/15 showed a 3.2 cm AN. I was alone when I was told (I wasn't expecting to find out right then and there) and I was in complete shock. I read about it and what I read SCARED the holy hell out of me. On 11/24/15 my hearing went AGAIN and returned to mild hearing loss with steroids.
I am a physical therapist and I set up a consult with a local neurologist and colleague. He told me surgery was necessary and about potential facial paralysis, hearing loss, balance issues, etc. and I nearly lost my mind. I was to return to work from maternity leave in 4 short days. I was already stressed about leaving my new baby girl as a first time mom, but now this - how would I proceed? When would I find time for consults, let alone surgery? how would I care for my daughter post operatively?
I did A LOT of research in a few short days. I sent my info to HEI and USC. I booked consults with 3 top neurosurgeons in NYC ( I am from Long Island) with extensive experience with ANs.
After speaking with each surgeon, I was relieved to find that the risks were still there for all of the above, but they each expected a good outcome for me, although likely deaf on the AN side, like a lot of others.
I ended up having surgery on 1/19/16 with Dr. Michael Sisti at Columbia University Medical Center via retrosigmoid approach. I was in the hospital until 1/24/16 (delayed one day due to a blizzard). He tried to save my hearing, but once he saw my auditory brainstem response during surgery, he knew it was unlikely. I felt incredibly comfortable putting my outcome in Dr. Sisti's hands. He has a gentle and optimistic, but realistic way about him. He treats you as an equal and takes time to explain and make you comfortable.
My surgery was 9 hours long and the first 2 weeks post op were hard, but controlled with medication. My husband took off time from work and my mother as well so that my daughter (4.5 months) and I both had help at the time (I was waking every few hours to take meds and needed help getting in/out of the shower etc.).
At 2 weeks I was off all medication and I started vestibular rehab and began to help with my daughter again, at 3 weeks I ventured out of the house for lunch, at 4 weeks I was independently caring for my daughter including bringing her up/down stairs, baths, etc (although exhausted at the end of the day), at 6 weeks I was driving, and it has just gotten better from there. I am 11 weeks post-op and plan to return to work at 15 weeks post-op. If I had a desk job I would have returned already, but since my job requires me to bend, lift, squat, and keep patients and myself safe, it was recommended by my PT that I make sure I have my strength and endurance back before returning and my surgeon was in agreement.
I have SSD on my left and I am dealing with some residual visuo-vestibular issues that I am told will likely resolve with time and continuing my exercises. From 8 weeks on I started to forget I had a 9 hour brain surgery to remove a tumor! It's not an easy road and it's not a short road, but you can do it!
I have decided to take courses to train to do vestibular rehab so I can help people like us :)
And thanks, Eddie, for the information and encouragement you gave and continue to give!
If you have any questions, please feel free to contact me. I would be happy to chat with you about anything and everything I have encountered :)
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so happy to hear the good news!
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Great outcome and story!! I am 30, but had my surgery 3 years ago.
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I am new to this, but need more info on vestibular rehab therapy. I was diagnosed about 2 years ago as I was going through physio after a knee replacement. I noticed that my balance was getting worse instead of better and that the hearing on my left side was terrible. To make a long story...... 1cm by 1 cm acoustic neuroma. I live in Windsor Ontario - directly across the border from Detroit. No one in Windsor could help me so I was sent to London ( 2 hours away ) and Toronto ( 4 hours away ) and am presently in watch and wait. I have noticed that my balance is worsening and I am having severe facial spasms on the RIGHT side of my face several times a day.( Had Bell's palsy 12 years ago)
How or who do I work with to improve my balance? I could have access to treatment 20 minutes away in Michigan but our provincial health insurance will not cover it. Any info on improving balance while I wait would be appreciated.
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Thank you so much for sharing your journey! Hearing that you have come through surgery successfully helps me to know that I am making the right choice!
Christina
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I am new to this, but need more info on vestibular rehab therapy. I was diagnosed about 2 years ago as I was going through physio after a knee replacement. I noticed that my balance was getting worse instead of better and that the hearing on my left side was terrible. To make a long story...... 1cm by 1 cm acoustic neuroma. I live in Windsor Ontario - directly across the border from Detroit. No one in Windsor could help me so I was sent to London ( 2 hours away ) and Toronto ( 4 hours away ) and am presently in watch and wait. I have noticed that my balance is worsening and I am having severe facial spasms on the RIGHT side of my face several times a day.( Had Bell's palsy 12 years ago)
How or who do I work with to improve my balance? I could have access to treatment 20 minutes away in Michigan but our provincial health insurance will not cover it. Any info on improving balance while I wait would be appreciated.
There is a whole section under post-treatment about balance issues which may help you, but please feel free to email me with any questions you might have and I would be happy to answer/help you the best I can. :)
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Thank you so much for sharing your journey! Hearing that you have come through surgery successfully helps me to know that I am making the right choice!
Christina
Glad you are feeling like you are making the right choice with your treatment. Good luck to you!
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Great story. I too found out in December when I had a three week old! Surgery when he was two months. I had a very similar recovery. Just lingering balance issues and terrible headaches. But I'm glad to read a story so similar. Best of luck in recovery and getting back to work.
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I too am newly diagnosed and currently have a 5 month old. Were either of you new moms breastfeeding? What was your experience with that? Did you just wean?
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I too am newly diagnosed and currently have a 5 month old. Were either of you new moms breastfeeding? What was your experience with that? Did you just wean?
I was breast feeding at the time I found out. I decided to wait two months so I could continue to feed. Then I gave myself ten days to wean off. Because of the length of the surgery, breastfeeding just wasn't an option. I thought about trying to start back up if I felt up to it (crazy!) but with the meds after, it would be a few weeks before I could feed again. It was just too much to deal with on top of everything. It helped that he was doing really well on formula.