Author Topic: Successful Middle Fossa at UCSD, May 26, 2022  (Read 1656 times)

theresamiller

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Successful Middle Fossa at UCSD, May 26, 2022
« on: June 16, 2022, 10:10:32 pm »
Hi everyone,
I just want to share my recent experience to give you hope that a good result and easy recovery are possible!

In a nutshell:
January 2021 I noticed ear "fullness", loss of balance getting out of bed and minor dizziness while doing drills/turns playing beach tennis.  It was so minor I ignored it. 

December 2021 I woke up and couldn't hear out of my left ear, it returned mostly within hours but my ear felt more full.  I waited a day, it remained the same so I finally called and saw my Dr. two days later, who sent me to an Audiologist and recommended an ENT.  The Audiologist did note some hearing loss and tried to get me into an ENT immediately.  She seemed panicked and said I needed to go to the ER for steroids immediately to ensure I didn't lose my hearing, since it was Friday and I couldn't see an ENT until Monday.  The ENT told me I needed an MRI but it wasn't urgent, I could wait a few months.  I went as soon as I could, a week later at 8:00pm and I received my results on 1/3/22, that it was a 1.3 x 6mm VS.

May 26, 2022 I had my Middle Fossa craniotomy w/Dr's Friedman and Schwartz of UCSD Health, in southern California (I live in Redondo Beach which is about a 2 hour drive).  I am thrilled to share that I was very fortunate!  I had absolutely NO pain after surgery.  I don't remember much of the day after surgery took place, only that I was confused in recovery (not aware where I was at the hospital or that I was in recovery).  After telling my husband profusely how amazing I felt and how amazing everyone was I then said "but when in surgery gonna happen?"  He told me it was over and I didn't believe him until he showed me a picture of the gauze around my head and I then looked at the clock and saw it was 1:50 (surgery was at 7:30), so it sank in.

My hearing was preserved and I had no facial paralysis (Dr. Friedman had told me I had a 35-40% chance of losing my hearing and a 1% chance of facial paralysis due to the small size/location of my tumor). I had some dizziness on day two going to the restroom, but it got better quickly.  I did have minor drips of fluid from my incision and Dr. Clausen was not concerned it was a CSF, he said it was like when we have a scab and some drainage.  He added some stitches and glue to help close that area and that was the end to any liquid!  I was healing so well I was told I would be going home a day early and I did! 

I did have a daily headache after I finished the anti-inflammatory meds.  I was taking tylenol daily until I went to my check-up 6/6/22 and Dr. Schwartz told me to alternate tylenol/aleve/ibuprofin and that if I took them daily my body would then depend on them.  The very next day I chose to take nothing for my headache (a 4 out of 10).  My headaches then stopped!

I think it's important to note, fortunately UCSD requires MRI's to be less than 4 mo's old before surgery.  Mine would be 5 months.  My tumor grew 2.5 mm since my last MRI...faster than most, but still within the "normal range". 

I will start by admitting that when I first learned I had this benign VS and that surgery required drilling into my skull - I freaked out.  I was scared and I cried.  I was so afraid of having my skull drilled into I thought, nope, I'm having radiation.  Then I learned radiation was only about 75% successful and the scarring would then make surgery virtually impossible.  Soooo, it was back to surgery for me.  To make matters worse, I wasn't thrilled with either of the 2 surgeons I initially met with (UCLA and Cedars Sinai, both highly regarded).  Both told me of the 3 options (WW, radiation, surgery) and told me they didn't perform surgery until another MRI showed the tumor growing; both said to wait a year for another MRI since they're so slow growing.  I told them I could not wait a year, they agreed to 6 and 9 mo's.  Neither seemed to understand that this was a big deal to me and I had a sense of urgency.  Neither told me about the ANA or that Middle Fossa approach was a good option for me since I still had great hearing; they only told me of the surgeries they performed which were 8-10 hours and would have a 50% risk of losing my hearing and 25-50% chance of facial paralysis.  Those odds were daunting to me.

I was left wondering, how do I know I have the best surgeons?  Google to the rescue!  I read a lot about surgeries and found out about the Middle Fossa approach to preserve hearing when under 2cm and I eventually found the ANA.  Multiple people mentioned Dr's Rick Friedman and Marc Schwartz in ANA so I then searched for them, finding them at UCSD.  They have a great website with a full service approach in their program (audiologist, PT, lodging, etc).  So I sent my MRI cd to Dr. Friedman and he called me a couple days later.  I was finally at peace with my diagnosis and was no longer afraid after finding these Dr's.  FYI, UCSD also has a Facebook page where Dr. Friedman holds virtual sessions to answer questions or discuss a topic - check it out!

6/6/22 I had my 17 staples removed at my check up (which were happily painless!) and the Dr's were quite thrilled to see my recovery, ability to walk and the healing of my incision.  I was told to continue the minor restrictions for another week and then I could "do whatever I felt I was ready to do". 

6/13/3022 Dr. Friedman emailed me to tell me I was relieved of any restrictions.  I began driving myself to the grocery store and appts (I actually drove about a mile on 6/9 to drop my daughter at her High Graduation and then attended the graduation when it began a few hours later).

I hope my experience gives some of you hope and I encourage you all to do your best to try to remain as calm as possible.  There's no proof, but it is believed to help your recovery when you go in calm (that said, we did create a Living Will days before surgery - I just thought it would be irresponsible not to.  I wrote a 2 paragraph letter to my husband and kids, explaining it was short because I had complete confidence in my surgeons - I'm so glad I was right).

Go enjoy life and have all the fun you want before surgery!  I played as much beach tennis as I could, ate a lot of great meals and enjoyed catching up with friends.  I had two glasses of wine and seafood the night before surgery, took my usual benadryl and melatonin to sleep, slept great and was up at 4:00 to get ready to head to the hospital !  I'm 57 and in decent shape, but 10lbs heavier than I would like.

I'm happy to answer any questions and I wish you all well...

donjehle

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #1 on: June 18, 2022, 12:44:54 pm »
Thank you, theresamiller, for sharing your wonderful experience!  I wish more people would do as you have done because it does inspire the rest of us and give us hope.

Thanks for sharing your experience with Doctors Friedman and Schwartz of UCSD.  I continue to hear great reports from patients of theirs.  I also have heard positive things about UCLA and Cedars Sinai, but thank you for sharing your experiences with your consultations from both of those places.

I am thrilled with your great results!  I wish every AN patient could experience what you did.  But it was wise for you to find the neurosurgeons who were skilled at AN removal and ones in whom you have confidence.  It makes a big difference.  I always regret the stories of those who went to the closest place to where they live and then had a bad experience with facial paralysis from a neurosurgeon who does not do AN surgery very often.  Your story should encourage others to do as you did.

Please keep us posted on how things go with you in the future.  And thanks again for sharing your story!
Don
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.

TrueKnits

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #2 on: June 23, 2022, 10:07:25 pm »
Thank you for relaying your experience and recovery timeline!
It is very good to read of your successful surgery.
As I await my own procedure I am enjoying time with my children as much as symptoms will allow.
I will also be writing letters to my husband and children but trust that I am in good hands.

Many blessings to you as you go forward!
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

meandan

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #3 on: June 28, 2022, 01:09:55 pm »
Thank you for sharing your Experience with us!! was very helpful.  I recently contacted DR. FriedMan and inclining to proceed with Surgery. He suggested Translyb but said i could choose Middle fossa too. Curious what your hearing word recognition was prior to surgery.  im struggling to pick between middle fossa and translb.

donjehle

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #4 on: June 28, 2022, 06:53:01 pm »
Thanks, meandan, for making your first post on the forums!  I hear wonderful things about Dr. Friedman.  It seems like that is a great choice for you.  Everyone's experience with acoustic neuromas are different because of age, size of the tumor, location of the tumor, preferences concerning loss of hearing or of facial paralysis, so what is good for one person may not be what is best for you.  I can see why it is a struggle to pick between middle fossa and translab surgeries.  All I can suggest is to read/view everything you can on the two procedures.  Usually, with enough information, people feel comfortable with one over the other.

I'll be curious to see what people say in regard to your post.  But also check out the ANA videos.  They are excellent in describing the differences between middle fossa and the translab approach.

Best wishes on your journey!
Don
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.

theresamiller

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #5 on: July 07, 2022, 11:34:05 am »
Thank you for sharing your Experience with us!! was very helpful.  I recently contacted DR. FriedMan and inclining to proceed with Surgery. He suggested Translyb but said i could choose Middle fossa too. Curious what your hearing word recognition was prior to surgery.  im struggling to pick between middle fossa and translb.

meandan:
Apologies for my delay in responding AND for my lack of technical expertise (I can't figure out how to "reply" to your post :-)

Before surgery I had extremely minor hearing loss (low pitches), I can't remember the %, but let's say it was insignificant.

Post surgery it remained the same on my left/surgery side; the right side had decreases slightly, and the audiologist said it could be due to minor swelling.  It too, was insignificant, did not affect my day to day, I don't notice it now either.

If you have good hearing currently and if Dr. Friedman thinks Middle Fossa is a good option, personally, I would lean towards Middle Fossa - it's a shorter surgery and better at hearing preservation.  I guess it depends on the size of your tumor and which surgery also has the better success of NOT disturbing your facial nerve.  That was a bigger concern of mine and Middle Fossa for me, only yielded a 1% chance of facial paralysis; vs the other surgeries which increased my odds of hearing loss (50% and facial paralysis 25-50%).

I hope this helps and I wish you the best results!


theresamiller

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #6 on: July 07, 2022, 11:39:26 am »
Thank you for relaying your experience and recovery timeline!
It is very good to read of your successful surgery.
As I await my own procedure I am enjoying time with my children as much as symptoms will allow.
I will also be writing letters to my husband and children but trust that I am in good hands.

Many blessings to you as you go forward!

Wishing you a very successful surgery and quick recovery from your 8/12/22 surgery!

TrueKnits

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #7 on: July 11, 2022, 05:34:21 pm »
Thank you!
I'm having a really rough time lately and every bit of encouragement helps!
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

drumfest

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #8 on: July 31, 2022, 02:23:59 pm »
Theresamiller,  Thank you very much for your post!!!  I was diagnosed with a 1.2 X 6mm VS in April of 2022.  I had a telephone consult with Dr Friedman and I'm seriously considering surgery w/him at UCSD.  My tumor has grown a bit as it was noticed on a previous MRI from an unrelated health issue.  Your success story helps to relieve some of my anxiety.  I'm 53 and otherwise healthy.  Thanks again and I wish you continued post operative success!!!
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

drumfest

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Re: Successful Middle Fossa at UCSD, May 26, 2022
« Reply #9 on: August 01, 2022, 11:58:38 am »
TrueKnits,  Wishing you a successful surgery!!!  I think you're in excellent hands with the Mayo doctors.  I had a video appt with Dr Link and Carlson at Mayo and they were fantastic!  Currently for me it's between Dr Friedman and Dr Link/Carlson.  I haven't decided yet, but they both are experts and provided great feedback.  Once again, good luck with your surgery and wishing you a speedy recovery!
Diagnosed 4/2022 L sided AN 1.2cm.  stuffiness/clogged sensation w/slight hearing loss but good WRS.  Occupation: Professional musician.  No treatment yet

 


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