Author Topic: my experience choosing a translab team  (Read 828 times)

brain91

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my experience choosing a translab team
« on: November 16, 2023, 02:50:00 pm »
i am 32 and was diagnosed on july 31st with 2.5cmx3.5cm AN with brainstem compression after significant hearing loss in my left ear. I am in Louisville, Ky. the following week was ANA awareness week and i gathered as much information as possible.


i was truly so scared before surgery and i am so thankful my tumor was FULLY removed by the wonderful team at UCSD. some days leading up i would feel guilty for making my family travel all the way out to san diego, spending the money, putting my dogs in kennels for 17 days, and things like that (not that anyone in my family made me feel this in any way - there are just so many emotions involved leading up to surgery and this is one i felt) but i am so grateful i had the opportunity to have this team at my disposal and know i made the absolute right decision considering they said my tumor was one of the "stickiest" they had seen. with such high volume of surgeries performed, if mine was one of the stickiest there then the surgeons back home probably hadn't dealt with anything like it. I posted about my experience post op as well in that area of the forum. I am now at 3 weeks post op and feeling great!

run through of the surgeons i met with
1. a few days after diag i met with a local brain surgeon - told me translab surgery was eventually necessary but I could wait and recommended I come back for another MRI in 6 months (jan 2024), then go from there. he had performed about 90 AN surgeries. the outcome he expected was only to be able to remove the tumor partially (I think he gave the figure maybe 80%) and do radiation on what was left, with about a 5 day hospital stay. explained how they scrape away at the tumor during surgery. also spoke heavily on expected but temporary facial paralysis and the options i would have post op for those issues such as weighted plates in my eyelids and such.
2. the week after, i met with another local surgeon who had pretty much the exact same thing to say as the first regarding the number of surgeries he had performed, partial removal with radiation and most likely a year of facial paralysis, but with the exception that I should NOT wait to have another mri and if it were up to him i would have the surgery by the end of the year because of the size of my tumor. said they do not put in a plate as it is unnecessary because "no body hits their head in that spot". I realize that could be true but i felt uncomfortable.
3. that same day dr. friedman called me earlier than my expected consultation (it was a friday, mine was scheduled for monday) and said if i had time he could do the consultation now. I had JUST watched him and dr. schwartz on the ANA awareness week and was so happy to be speaking with such skilled surgeons. they told me while they could never make the guarantee their goal was full removal of the tumor through translab approach, and gave some stats on how low even temporary facial weakness was with their team. explained how their surgery was performed differently in that they have specialized tools to help suck away a majority of the tumor. Also recommended not waiting if i could avoid it because surgery can become more difficult as the tumor grows. Hospital stay usually 3-4 days. I told him I'd like to get on the surgery schedule. I went into that weekend feeling very relieved and with my mind 99.9% made up that i would be traveling to san diego but I was going to poke around a couple more places.
4. I reached out to vanderbilt as its much closer to me but they required me to come in person for a consultation and by this point i was honestly just done with how overwhelming the past two weeks had been and decided not to pursue and was also very eager to just get the ball rolling. i tried poking around cincinatti but wasn't seeing anything stand out for me to easily gauge. I needed the ease of UCSD (on top of their impressive experience) for my sanity.

Another reason I felt set with UCSD by this point was how comforting their team was to me (in general, but also compared to the other 3 places I reached out to) before I had even spoken to Dr. Friedman. Calling for the initial consultation and actually getting a live person blew my mind. They made it so easy for me to send them my MRI scans and a couple days later I received a call from one of their patient navigators who had been through the surgery years ago (i think his name was david) and he was so kind. as soon as he noticed I was going into panic attack mode having to speak about my issues he calmed me down by asking me about something we had in common (photography) and helped me clear my mind. he went on to speak highly of the surgeons and their stats and explained so clearly how the process worked. I also loved that they had housing so close to the hospital though it is not guaranteed and back up housing is recommended. we were able to book a fully refundable airbnb in the area should the family house come/not come through.

Once surgery was scheduled for Oct 26th they handled all the insurance, etc and they were always available for any questions me or my family had. I took a long break from wanting to speak with them (a month) because I was still overwhelmed and scared about all of it. I really struggled acknowledging what i was going through but I wish I had jumped back on the phone with their patient navigator Melissa sooner than later because once i did she answered all of my lingering fears and if I had pushed through and called her a month before maybe I would've saved myself some pain. She spent an hour on the phone with me and my husband and was available if i needed her. I would go back and forth feeling ok but also still being so extremely scared as it got closer, especially since I had to travel so far. My doctor prescribed me hydroxyzine a few weeks before surgery to at least help me get some sleep.

A week before surgery we heard from La Jolla Family house and had secured a room! This was so so helpful. They had a full community kitchen and the walk to the hospital was maybe 15 minutes. We stayed there until the tuesday after my surgery and then moved to an airbnb in mission beach.


Roggae

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Re: my experience choosing a translab team
« Reply #1 on: November 16, 2023, 10:29:58 pm »
Thank you. I’m trying to get my insurance to cover a translab at UCSD for a CPA meningioma. Everything you’ve said is consistent with my experiences thus far. Not just have to find a way to make it work. I appreciate the detailed account.

centerbolt

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Re: my experience choosing a translab team
« Reply #2 on: March 20, 2024, 12:54:56 am »
Hope all the luck will come to you.

CelHand

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Re: my experience choosing a translab team
« Reply #3 on: April 01, 2024, 06:25:16 pm »
I am brand new here. Not yet diagnosed, but expecting to be diagnosed as I have self-diagnosed with AN. But here is my simple question - was your hearing restored?