1/17/23 Translab surgery at Mayo - my experience

[bfoley]

Don urged me to share my experience.  I'm sure there is a lot more I could add and I am happy to answer any questions, but thought I should add to the boards with how things went for me. (your own experience may vary!)

I was diagnosed in Feb 2019, had Gamma Knife with Dr Link at Mayo in July 2019.  The growth was believed to be aggressive, so a higher dose was radiation was used.

Annual MRIs since.  2 years ago were showing signs that were questionable for failure, and this year failure was clearly shown.  So I needed a new game plan.  Hearing was already gone on tumor side, so the most direct approach (translab) was the best.

Pre-surgical appointments were the day before surgery (1/16).  We rented a house in Rochester, 1 block away from St Mary's Hospital, 3 br, 1 and 1/2 ba with full kitchen, dining room, etc.  Would HIGHLY recommend this for anyone having surgery at Mayo.  There was off street parking and walking distance to the hospital.  No paying for parking, etc. Grocery store also walking distance.

Reported to the hospital at 5:50am.  Was prepped and ready for surgery about 7:30.  I was out and in ICU about 3:30. 

They believe they removed the entire tumor (YIPPEE!) and although I was afraid of post surgery complications, things were not as bad as I had feared they would be.  No one can tell you how much balance vision etc will be affected.  The first day the room spun with each blink, but by the second day I was doing much better.  I walked frequently, taking 2 laps around the floor as often as I could. 

The care teams came by to check me frequently. I was able to go home Friday (surgery was on Tuesday).

I understood others had issues during surgery with positioning and therefore back/hip problems upon waking.  I only had a sore on one heel and the other outside baby toe.  Both of those were gone by the next day and did not affect my walking/recovery.

My neck was super sore, and my nurse Samantha (shout out to her!) got me a heating pad for the shoulder/neck area.  By the next am its was so much better.

Balance after was not great but not to the point where I needed help.  And it just gets better the more I move. My sister has been walking me most days, 2-3 miles. It will take time, but I feel like I will get back to where I was prior to surgery within 2-4 months.

Dr Link and Dr Neff and their teams were the best.  I had every confidence going in and I was not disappointed.  They were very kind, considerate and I felt they really cared about me.

I have a baseline MRI scheduled in April, and then they will not need to see me for 2 years!!!   

I'm happy to pass on any information you want to know about my experience.

[cherylann]

Thank you so much for sharing your experience.  Was just diagnosed in Nov and I was in denial before that. Rode mtn. bikes and swam a lot .  Still swimming, stationary cycling, yoga, weights, walking 4 miles at a time...still working on strength and balance.  I am in Tucson and we don't have a Mayo clinic here (it's up in Phoenix) and I am hoping my surgeons know what the are doing! Seeing double (far vision) and dizzy as all get out.  Vertigo has gone away. My neck is pretty sore already - from turning head to breathe when swimming.  I am practicing laying on my back (stomach sleeper) and turning my head so that the right ear is up. My VS is 3.3 cm apparently and my surgery will probably be longer as there is a skull bone in the way...(of course!) I am so glad to hear you have recovered fully and well! (I am 69 years old- you didn't tell me your age!) :-). It makes a difference I hear...any suggestions for pre and post surgery you haven't already shared? I need all the reassurance I can get right now!! Thank you!!

[donjehle]

Thank you, Bonnie, for sharing your experience!  Since I had a consultation with doctors Link and Neff, I was very curious to know how treatment would be at the Mayo Clinic.  I know they were wonderful during my consult.  But more important than anything, it is good to know that everything went well for you!  I will be anxious to hear when you are fully recovered.

Thanks for sharing the details, even a suggestion on where to stay.  I found it interesting that your surgery was on Tuesday.  I thought they told me they would do mine on a Thursday and then have the weekend to recover.

I'm guessing that you were not able to drive afterwards.  That could make a difference for me on whether I would fly to Rochester or drive there.  I would prefer to drive, but I doubt that I could drive back.  It might be better to fly.

Thanks again for sharing!
Don

[bfoley]

Greetings Don!

I’m happy to share things, especially if it can help others be prepared or have an idea of what could happen!

I was able to ride home.  I personally did not well enough to drive for 3 weeks. It’s a judgement call on balance and ability to turn head, etc. I live in the twin cities metro area, so it’s less than a 2 hour drive each way. I know I am blessed to be this close.

Cherylann-

It sounds like you are working on your balance before surgery as much as possible. I think the fact that I had worked my balance daily since diagnosis was one thing that allowed me to be able to walk independently so fast.  Pre surgery I worked towards 8,000 to 10,000 step (some of which I did the image/gaze stabilization exercises during). Since surgery, my main focus is trying to regain balance, so I am walking indoors at various malls. Ice is NOT my friend so indoor walking is what I feel comfortable with now. I can go at a fairly good pace for 30 minutes, then I feel that I get slower.  I am trying to build the stamina back up. I have another 4 weeks off from work, and like I said, my main goal is to get as much balance / gaze stabilization as possible by then.

Everyone take care!
Bonnie

[cherylann]

Thanks for information Bonnie and your well-wishes too.  I am one week out....didn't sleep much last night.  Gets harder and harder to. Had lab tests today (EKG, vitals, blood)- hopefully I am good to go.  I just want Feb. to be OVER!  Also just read somewhere that what you do before surgery has no bearing on what happens after it...don't want to believe that, but....well, you know how research goes! Keep MOVING!!! xo Cheryl Ann