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Type 1 Diabetics with AN Surgery experience

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JmLgrace:
Hi,
I was wondering if anyone out there is a Type 1 Diabetic and has gone through Trans Lab surgery.  I would really like to hear your experience and get any advice you have to offer as I am headed that direction.  My AN is 2.9 x 2.6 x 2.3.
Thank you!

JmLgrace:
Okay, so I’ll answer my own question.  I've been a T1 for diabetic for 48 years.  My experience started with being mis-diagnosed by two ENTs.  About a year later I finally got an MRI which showed the 2.9 x 2.6 x 2.3 Acoustic Neuroma.  My 3rd ENT was helpful, but it would be months before I could get an appointment with the local Neurosurgeon.  I contacted several other doctors who specialize in AN but was unable to get any response.  Finally on a day when I was at my whit’s end, my husband contacted the Mayo Clinic.  In only two days, I received a call back and approximately a month and a half later I was scheduled for surgery. 

I think it was all by God’s design.  Mayo was the place for me.  Everyone I encountered was friendly and helpful and the doctors were amazing!

They thought a retrosigmoid surgery was optimal in order to protect my facial nerve which was causing major trouble (eye/face issues, burning tongue and mouth).  That was the right call!  Surgery lasted 10 hours.  They were able to remove most of the tumor, but some was left on my splayed facial nerve (~4mm).  The endocrine team did a good job keeping my blood sugars in a reasonable range during and post-surgery (they tried to keep the glucose readings under 160).  Higher than I’d like but reasonable under the circumstances with the trauma of surgery/steroids given.  Post-surgery I was SO sleepy and grateful to have someone else running my diabetes.  On the third day I was allowed to resume insulin therapy via my insulin pump and Dexcom glucose sensor.  (Note…they still did finger sticks every 2 hours.) 

Day two I was tipping to the left the first time the PT got me up…and majorly nauseous.  After that, it just got better.  My wonderful husband and an ice pack on my head were priceless!    There was some intermittent double vision at first which took about 3 weeks to resolve.  Also, it took about 1.5 months to get my insulin requirements to go down to pre-surgery levels.  Using a walker for about 2 weeks and a shower chair were helpful.  I started PT at home, following a YouTuber (Movement & Function).  She has beginning, intermediate, advanced and more vestibular rehab videos.  By the time I got into PT for a vestibular evaluation, I was already functioning at a point where she suggested I continue doing what I was doing and there was no need to return for therapy.   Taste alteration was an issue for about 3 months and couldn't have survived without eggs and protein drinks.  Almost everything else just turned my stomach.  I do still have occasional headaches, which are new to me, but they are mostly mild.

At this point, I feel better than I have in ~5 years.  The imbalance is almost non-existent, H-B is a 1, and although there is still some facial nerve irritation, and some residual tumor I feel truly blessed! 

On the less important side…there is an itch that I just cannot quench.  Yep, it’s on that side of my head.  Hoping it will go away!  😊 

I can’t say there was no discouragement along the way.  There was.  A couple of days after surgery when I was down about the slightest droop in my face, I stumbled on Maria Odete’s post “I Had a Moment of Reflection Yesterday”.  It was a great encouragement to be thankful for what we have been given.  Thanks Maria! 

By God’s grace, the prayers of many, and two fantastic surgeons, I am here and thriving post-surgery. 

drumfest:
Congratulations JmLgrace!!!  Wonderful to hear your surgery was successful and your recovery is progressing well!  I, too, have consulted with Mayo and am considering treatment from them.  Thanks for the positive reviews as it helps confirming future choices.

Wishing you continued great progress in your journey!!  d   :)

donjehle:
Thank you, JmLgrace, for sharing your experience!  I have also consulted with Mayo and found the specialists there to be excellent!

I couldn't comment before on your question because I don't have diabetes and I haven't had surgery yet.  But I really appreciate that you came back and shared your experience because it really helps others who are considering having the procedure done.

I wish you the very best recovery!
Don

JmLgrace:
Drumfest,
Don’t know which Mayo location you are looking at, but I went to Rochester.  Driving into the town it there were beautiful hills, trees and wildlife.  Just up my alley.  The town was a little more difficult as they had numbered streets going both directions.   ???  I think most of the hotels had "Mayo", as well as long stay discounts and free shuttle service.  We stayed just across the street from the hospital, so it was convenient. Got to walk to the hospital the morning of surgery. 😊  The other patients, many who come regularly to Mayo were great.  We arrived the day before surgery for several appointments and this elderly couple we were visiting with in the shuttle decided to take us on as newbies, advising us on dining, getting around Mayo and even escorting us to my first appointment. 

It’s helpful too that Mayo does the virtual visits.  I was able to have my initial appointment from home before heading to Mayo for surgery. 
I wish you all the best in finding and getting the right care for you! 

DonJehle,
Good to hear from you again!  I see you got a cros system.  What have you thought of it?  I got a Oticon cros about a month ago.  I thought I would be able to hear and understand everything although I’m not sure how much, or even if it helps.  At least it has not made enough difference that I am compelled to wear it regularly.  Maybe the fitting is just not right yet??  I hope your journey is going well!

Blessings to you both!

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