Author Topic: Four weeks post retrosigmoid... So far, so good!  (Read 772 times)

Matthew

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Four weeks post retrosigmoid... So far, so good!
« on: November 22, 2017, 04:00:16 pm »
I’m now 4 weeks post right side retrosigmoid at Mayo Clinic with Dr. Link and Dr. Carlson. The tumor was entirely removed, my right side hearing was not able to be spared (per an in-procedure decision made in accordance with my wishes), my facial nerve has no deficit, a CSF leak was successfully repaired, and my recovery is going great!

I’m walking at least a mile every day, driving short distances, and of course keeping up with my vestibular exercises. My dizziness (which was profound for the first 2 days) is resolving quickly but becomes pronounced when I become tired. My head discomfort, both generalized headaches and site pain, has improved to the point of being only fleeting instances and I haven’t needed any type of painkiller for a week. Two weeks after surgery I began having R sided facial weakness (eye, lips). I was put on a 1 week dexamethasone taper, and today my facial function is 100%. The adjustment to single sided deafness has not been as difficult as I had imagined. I have been in many settings- loud restaurants/bars, crowded events... so far it hasn’t changed my experience on this planet! I am a gigging musician and although I’m making arrangements to accommodate my new situation I have yet to resume playing and I anticipate it will be quite an adjustment.

Foremost to me is that the tumor is now gone, and it is no longer the last thing I think about before I sleep nor the first thing I think about when I wake. That real estate is once again occupied by my family, friends and all of the great things I have to look forward to!

If anyone has any questions about my experience (my choice of treatment, the procedure, etc.) I’d be more than happy to share. You can ask me here or message me if you prefer.
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

Kristena

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Re: Four weeks post retrosigmoid... So far, so good!
« Reply #1 on: November 26, 2017, 07:45:55 pm »
Congratulations Matthew! It sounds like you are doing really well!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

Matthew

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Re: Four weeks post retrosigmoid... So far, so good!
« Reply #2 on: November 29, 2017, 10:26:03 am »
Thank you Kristena! I know there may be ups and downs ahead, but I will remain very optimistic... it is the most powerful thing I can do while on this journey. Hope you are well!
Matthew in Rochester, MN, 46 years old
2.0 x 1.3 x 1.8
Diagnosed 7/5/17
Retrosigmoid 10/23/17
CSF leak repair (fat graft) 10/30/17

Jet747

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Re: Four weeks post retrosigmoid... So far, so good!
« Reply #3 on: December 02, 2017, 07:59:07 am »
Good to hear your positive update Matthew!

Have a great holiday season and best wishes to you in 2018!!!

BR,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

ColleenS

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Four weeks post retrosigmoid... So far, so good!
« Reply #4 on: December 14, 2017, 12:27:57 pm »
Great to hear things went so well Matthew. I also had a leak and the surgery was not as bad as the five days laying flat with the drain in place. The insertion of the drain was the worst part for me. Every week and then every month is better and better!
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

 


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