Author Topic: Choosing Microsurgery  (Read 1521 times)

skier

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Choosing Microsurgery
« on: September 28, 2023, 10:19:30 am »
Hi,
I am getting mentally ready for my upcoming surgery. I find myself lurking on the chatboard a lot.

An acoustic neuroma is a tough diagnosis, because of the complex symptoms, the uncertainty of its progression, and the relative lack of medical consensus about what to do.

Educate, educate, educate. Get the New Patient Kit. Read it all. Listen to doctors on the video seminars on the ANA website.

Get second opinions from the top doctors you can find.

Ask your tough questions on Zoom support meetings, in appointments with MDs, or elsewhere. Prioritize the information from MDs and experts over the stories from patients.

Remember, anecdotes are all we patients can offer each other. Our first-hand experience is interesting and often helpful to others. However it isn't a substitute for medical advice that is given to you directly about you, from an MD who has learned your symptoms, your hopes/fears, and who has analyzed your MRI and audiogram.

I am grateful to all the people here who have told their stories. It's also key to educate yourself about the medical perspective on this tough diagnosis and get those second (and third) opinions until you feel comfortable with your decision. I really valued both types of advice greatly.

Best,
Skier





« Last Edit: December 02, 2023, 08:19:28 am by skier »

DanFouratt

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Re: Choosing Microsurgery
« Reply #1 on: September 29, 2023, 03:13:03 pm »
Well said, we are ourt best advocates.

In my decision journey one person told me when you make a decision do not second guess yourself! Some of the best advice I received. As you can seen in my signature block I went a differ path. 

I wish you the best with surgery and recovery.
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

donjehle

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Re: Choosing Microsurgery
« Reply #2 on: September 30, 2023, 02:34:22 pm »
That's a great summary of good counsel, skier!  That's very helpful for new members (and for those who lurk).

We wish you the best on your upcoming surgery!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

skier

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Re: Choosing Microsurgery
« Reply #3 on: November 13, 2023, 03:59:01 pm »
I'm about 3 weeks post-translab. I was deaf in that ear before surgery, so no difference there. The tinnitus seems quieter and different.

I'm told the trans-lab was successful with a total tumor resection and that the facial nerve is intact.

My facial nerve function is excellent.

These results, along with no change in balance compared to pre-surgery, were a big relief.

I find myself feeling a little lost, as there is a big emotional change between 2.5 years of dreading surgery--and now 3 weeks post-op. A bit up and down emotionally, although the recovery is going super well.

Anyway, so far so good. I went to the best surgical team I knew of, and I'm glad that I did. Thank you Dr. Friedman and Dr. Schwartz--and team.

Also, all the testimonials for them on this chat board helped me decide. It was so good to feel safe in their care.

Best,
Skier

Lost significant hearing in left ear, March 2021, tentative diagnosis SSNHL with viral damage. Age 63.
MRI Oct 2021 and Dec 2021 (with proper protocol) : Diagnosis small Acoustic Neuroma, left ear. New balance problems.
MRI June 2022: 2mm growth in largest dimension. 
MRI June 2023: 4mm growth in one year to reach just less than 2cm in longest dimension. Advised to Treat.
Status June 2023: Fully deaf in left ear per audiogram. Balance function: compensating very well and improving with Vest. Rehab. PT pre-op.

Treatment choice: Translab surgery with UCSD. Oct. 2023.
Results: Full tumor resection; facial nerve preserved. Balance function very similar to pre-surgery/perhaps the same.
« Last Edit: December 02, 2023, 08:20:47 am by skier »

DanFouratt

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Re: Choosing Microsurgery
« Reply #4 on: November 13, 2023, 05:28:46 pm »
Thank you for sharing a great outcome.  Good luck in your continued recovery.
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

DodgeAU

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Re: Choosing Microsurgery
« Reply #5 on: November 15, 2023, 01:48:18 am »
That's good news, Skier! Thanks for your update and wishing you well in continued recovery and healing from the treatment.
Sep 2023: AN shrunk by 3mm
Jun 2023: Hemifacial spasm disappeared
Oct 2022: MRI shows no growth, hemifacial spasms started
Mar 2022: GK treatment at Peter Mac Melbourne
Dec 2021: 18mm x 10mm
Oct 2019:  12x7 mm, Watch mode
Mar 2019: 7.5x5.5 mm, Watch mode
Aug 2018: Diagnosed 6x4x4 mm AN left

Greece Lover

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Re: Choosing Microsurgery
« Reply #6 on: November 15, 2023, 10:39:41 am »
Glad to hear your report.  The emotions post-surgery are strange, often perhaps exacerbated by medications, etc. I also struggled because many of the things I usually do to feel good (bike riding, for example) I couldn't do right away.  But sounds like you're on a good path!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

skier

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Re: Choosing Microsurgery
« Reply #7 on: December 02, 2023, 08:30:02 am »
Just about five weeks post-op, now. Feeling pretty darned good.

This week, I went cross-country skiing for the first time this season! For 90% of the one-hour ski tour, I really forgot that I have had recent surgery. I was just out enjoying what I enjoy! Big smiles!

Wow. I feel like it is all such a gift to have the tumor removed safely. Thankful to the medical team and the surgeons at UCSD!

I wish everyone courage in their AN journeys!


donjehle

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Re: Choosing Microsurgery
« Reply #8 on: December 02, 2023, 07:28:38 pm »
Wow!  That's tremendous, skier!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

Greece Lover

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Re: Choosing Microsurgery
« Reply #9 on: December 04, 2023, 09:55:45 am »
That's amazing!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

DanFouratt

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Re: Choosing Microsurgery
« Reply #10 on: December 05, 2023, 04:32:09 pm »
That is great to hear, keep on moving forward
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

jaynereiter

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Re: Choosing Microsurgery
« Reply #11 on: January 19, 2024, 11:17:53 am »
New here. My tumor was found 8/1/2023 at 1.4, the old wait and see only lasted 60 days and symptoms appeared.  Numb tongue, lips, rt. side of face numb, more hearing loss. New MRI showed tumor grew to 2.3. Having it removed in 1 week. 

HawThorne

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Re: Choosing Microsurgery
« Reply #12 on: January 24, 2024, 03:52:20 am »
"New here. My tumor was found 8/1/2023 at 1.4, the old wait and see only lasted 60 days and symptoms appeared.  Numb tongue, lips, rt. side of face numb, more hearing loss. New MRI showed tumor grew to 2.3. Having it removed in 1 week." 

Hi jaynereiter,
getting my own surgery in a few weeks, very similar symptoms to yours -  hearing almost gone over the the course of five months, and lots of numbness on face, tongue, lips that has appeared over the las month or two - plus my balance has turned into a bit of a joke... My tumor is 2.7 cms - amazing that I still felt fine in early October before its discovery, and now my old life seems pretty much a distant memory. Time to get this sucker out! Courage to you, and all the best for recovery!

jaynereiter

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Re: Choosing Microsurgery
« Reply #13 on: January 24, 2024, 11:05:21 am »
My surgery is scheduled for 1/31 at Mayo MN. I am looking forward to having it out.  Hoping recovery will just be normal as others have reported.
Best of luck with your outcome.

skier

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Re: Choosing Microsurgery
« Reply #14 on: January 27, 2024, 12:48:59 pm »
Sending good wishes to the people (from the above comments) who are having surgery soon.

For what it's worth, I had the idea to tell myself very positive things before surgery, and it steadied me a lot. I specifically told myself that I was INVITING the surgeons and their team to help me, and what I meant was to tell my mind, explicitly, something like, hey this is going to be weird, but it's a good thing because it's on purpose to help me with the acoustic neuroma problem.

Second, I vowed to be grateful for the help, deeply and sincerely. I appreciate expert medical care. 100 years ago, for instance, would not have been a good time to need this type of surgery.

Lastly, I kept telling myself I would be good at healing.

Those three things seemed to make the pre-op hours easier and the post-op hours, too. No one likes getting surgery, but it is good to prepare your mindset.

I'm 13 weeks post-op, and I could not be any happier with my outcome from surgery. Wishing the same for you'all.

Best,
Skier