Author Topic: 31 year old physical therapist & new mom 11 weeks post op Dr. Sisti in NY  (Read 4748 times)

Bellium

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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 :)
3/2011 woke up with left tinnitus and hearing loss - diagnosed with SSNHL, no MRI. Hearing returned with steroids.
11/4/15 woke up with left facial numbness
11/18/15 MRI showed 3.5cm AN
1/19/16 Surgery with Dr. Michael Sisti at Columbia
Left SSD, vestibular rehab, no facial nerve issues

Patti

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so happy to hear the good news!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

michellef08

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Great outcome and story!! I am 30, but had my surgery 3 years ago.
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

angielina

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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.

cebollinger

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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
Diagnosed: 5/27/14, AN on right side
6/12/14 - 1.2cm x 4mm x 5mm
11/25/14 - 1.3cm x 6mm x 4mm
1/4/16 - 1.7 cm x 6mm x 6mm
6/1/16 - Retrosigmoid Craniotomy - success!

Bellium

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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. :)
3/2011 woke up with left tinnitus and hearing loss - diagnosed with SSNHL, no MRI. Hearing returned with steroids.
11/4/15 woke up with left facial numbness
11/18/15 MRI showed 3.5cm AN
1/19/16 Surgery with Dr. Michael Sisti at Columbia
Left SSD, vestibular rehab, no facial nerve issues

Bellium

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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!
3/2011 woke up with left tinnitus and hearing loss - diagnosed with SSNHL, no MRI. Hearing returned with steroids.
11/4/15 woke up with left facial numbness
11/18/15 MRI showed 3.5cm AN
1/19/16 Surgery with Dr. Michael Sisti at Columbia
Left SSD, vestibular rehab, no facial nerve issues

ccooper

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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.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

Trinityfilled

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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?
Diagnosed AN on 4/18/16, 3.6x3.4cm
12hr Retrosigmoid surgery 6/24 removed 85%
Second surgery, 6hrs, with Friedman & Schwartz at UCSD 8/7/18 for regrowth 3.3x1.5cm. Small portion left to preserve facial nerve.
8/15/18 CSF leak from incision after suture removal. Sutures replaced.

ccooper

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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.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

 


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