Author Topic: Newbie  (Read 1574 times)

bonnieD

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Newbie
« on: June 10, 2022, 03:55:34 pm »
Hi all,

I was recently diagnosed and still trying to get used to knowing I have a tumor in my head.  I still tell myself that I'm very grateful it could be worse but sometimes that still doesn't make me feel better.  Although my first consult was hopefully, but three days after and I'm going back into my rabbit hole.  I just have this fear that this tumor has decided to grow super fast all of sudden but I've likely had it for over ten years (according to my doctor).  My first consult was with Dr. Friedman at UC San Diego and he was very positive and friendly.  He recommended the translab approach but I'll loose my hearing completely.  I know that is a small price to pay overall of what or how bad it could be but I get sad because I can still hear out of that ear - not much but enough to hear my young daughter whisper to me.

Thanks for reading all that but I do have a question...  I know that everyone has different symptoms and it is all over the board and nothing to do with size, location, etc.  But just curious if others feel this way too:
1) Less sleep makes my tinnitus louder and more dizzy.
2) Weird pings of pain randomly behind my temple.  They go away as quickly as they came.  And they are sporadic.

Is it just me that I have this constant fear all the time now.  I'm glad that there is a support system here.  I live in Oregon and will try to do one of the online groups soon.

Thank you!
Fall 2007 - Tinnitus started
June 2022 - 45 Yrs Old. Diagnosed left ear AN

2.3 x 2.2 x 1.6 cm

Symptoms:  Some numbness in left tonsil and tongue, pressure and mild headaches, more hearing loss, and dizzy spells.  Also... High MCV (enlarged red blood cells) but no cause. Anyone else?

donjehle

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Re: Newbie
« Reply #1 on: June 11, 2022, 09:45:45 am »
Hi bonnieD!

We might not be able to relate to everything, but if there is one thing most of us on these forums CAN relate to, it's the fear you mentioned and the disbelief that we have a brain tumor.  I still remember being in shock when my ENT told me I had an acoustic neuroma, and then said the good news was that my hearing was still good.  I lost my good hearing while watching and waiting, so my 'good' news wasn't so good after all.  But my fear continued to grow, especially as I would lose my balance and fall.  I was afraid I would lose my job.  I was afraid my health would continue to decline.  I was afraid of many things.  But the reality is that even when our symptoms become dramatically worse, the brain tumor is not growing very fast.  I told my neurosurgeon that I didn't want it growing at all.  But the reality is that the tumor's slow-growing nature gives us time to deal with it in a way that makes the best sense for us and is not just a quick emotional response to the bad news.

Thank you for posting again, bonnieD, and please continue to share your acoustic neuroma journey.  I would be curious to know if in your other consults, they will agree with Dr. Friedman or whether they would recommend other options instead.  Your tumor may not be a suitable candidate for radiation, but that might allow you to keep your hearing and allow your daughter to whisper to you.  Or, someone else may still recommend surgery, but a different approach which would keep your hearing intact.  So, keep us updated on what finally happens.  We are rooting for you!
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.

bonnieD

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Re: Newbie
« Reply #2 on: June 11, 2022, 10:39:00 am »
Thanks donjehle - next appointment is this Friday.  So far getting on their books and something about one of their neurosurgeons leaving and postponing my referral already started a bad precedence in my mind.  So I'm likely already not going to have the surgery there but I'll still see what they have to say. I may change my mind.

So far I only have three consultations total - I don't know if that's enough to make such a big decision.  I looked at at least 10 venues for my wedding so maybe three neurosurgeons is a bit light when deciding. It's a little harder for sure and I personally don't want to wait too long. 

Definitely a hard road to go on and learning along the way.  Appreciate you and everyone's help!
Fall 2007 - Tinnitus started
June 2022 - 45 Yrs Old. Diagnosed left ear AN

2.3 x 2.2 x 1.6 cm

Symptoms:  Some numbness in left tonsil and tongue, pressure and mild headaches, more hearing loss, and dizzy spells.  Also... High MCV (enlarged red blood cells) but no cause. Anyone else?

Girldad

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Re: Newbie
« Reply #3 on: June 11, 2022, 10:02:51 pm »
Hey bonnieD, I wanted to let you know that I recently had surgery at UCSD with Friedman and Schwartz and have had excellent results. My tumor was just slightly smaller than yours. Dr. Friedman said that they could go retrosigmoid and try to save my hearing (doubtful), but I decided to go translab for a better chance of total tumor removal. Adjusting to single sided deafness has not been that bad. I had a BAHA implanted at the time of my surgery.  If you do decide to go with translab surgery, you might do some research and see if something like that might be right for you.

I am not trying to influence your decision, just wanted to give you my account. You should get as many opinions as you think you need to be comfortable. If you are in Oregon, how far would Stanford be?  I see a lot of people on here get second opinions there.
« Last Edit: June 12, 2022, 08:50:10 am by Girldad »
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm
Translab surgery at UCSD 3/17/22
with Drs. Friedman and Schwartz
BAHA user

TrueKnits

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Re: Newbie
« Reply #4 on: June 23, 2022, 03:38:50 pm »
Hi Bonnie!
I am also recently diagnosed and 45. Our tumors are different sizes and opposite ears but I think our experiences are similar.
I want to emphasize the importance of communicating your thoughts regarding your hearing to your physicians.
If there is a possibility of saving hearing that's wonderful. In my case I'm told I have a 33% chance of preserving hearing in my AN ear post surgery.
If there is not a possibility of saving hearing, that's unfortunate but life is a beautiful tapestry of stimuli and expression. I too will lament not being able to hear my children with my AN ear should it come to that, however I am incredibly grateful for the many other ways my children have to express themselves to me.

Wishing you love and peace!
« Last Edit: June 23, 2022, 09:51:34 pm by TrueKnits »
10.4 mm Right Side AN Diagnosed 5/25/2022
Retrosigmoid Surgery Scheduled for 08/12/2022
Doctors Neff and Van Gompel Mayo Rochester

gbly

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Re: Newbie
« Reply #5 on: June 24, 2022, 01:09:29 pm »
Hi Bonnie.
Don't let this get you down. I look at our VS as a reminder that we are given a chance to reassess what our dreams and goals are and that this is the reminder.  We have to take care of it, but then you get the reminder to embrace and do the things you always wanted.   I was scared too, but then I decided I was going to grab life by the tail and go for the ride.  Easier said then done, yes, but like Don said you have time to make the decision.

If I could do it slightly different, I would not have waited.  I would have radiated immediately.  I had planned on surgery, but it turned rapid and changed mid-discussion. 
Please keep us posted on our journey and you are in the right place to vent and ask questions.  We have all been whereto are and thinking as you have.  And the big thing is after treatment the journey is not over.  We all have the facial stuff sometimes to deal with.  But I have appreciate the reminder to enjoy life, cause we only get so many trips around the sun.

Good luck on your journey, we are here to listen.
GB

bonnieD

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Re: Newbie
« Reply #6 on: June 26, 2022, 04:13:01 pm »
Thank you all!!   After my fourth and final consult, it sounds like my hearing is a loss.  So I’m opting for Translab. 

Yes, life is a blessing.  I’m trying now to prepare myself for the surgery.  I have that scheduled at UC San Diego on August 23rd. But I do have a consult with a neurosurgeon here in Oregon. They basically start with the Neurotoligist and then after I say which direction I’m leaning towards, I then talk to the neurosurgeon.  Seems different then other places.   

Anyways… I’m definitely mourning my soon to be hearing loss in my one ear but I don’t have much hearing now so it shouldn’t be that much different I hope.  We shall see..
Fall 2007 - Tinnitus started
June 2022 - 45 Yrs Old. Diagnosed left ear AN

2.3 x 2.2 x 1.6 cm

Symptoms:  Some numbness in left tonsil and tongue, pressure and mild headaches, more hearing loss, and dizzy spells.  Also... High MCV (enlarged red blood cells) but no cause. Anyone else?

TrueKnits

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Re: Newbie
« Reply #7 on: June 26, 2022, 04:28:04 pm »
I have heard great things about UCSD.
Please keep us updated as you approach your surgery.
Mine is scheduled for a week and a half before yours and it helps me to read of others preparing and knowing that I'm not alone.
I will do the same and encourage you as best as I can!

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

Girldad

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Re: Newbie
« Reply #8 on: June 26, 2022, 06:13:06 pm »
Good luck with your upcoming surgery bonnieD. You are in very capable hands with UC San Diego. My experience there could not have been better.

Our AN journeys have been very similar. I am 40 years old and had an AN of similar size to yours. I went through the same process of trying to decide if I was going to try and save my hearing. I ultimately decided on translab for a better chance at total tumor removal.

The weeks leading up to the surgery were the toughest for me. I lead a pretty active lifestyle with a physically demanding job. I thought all of that might be changed forever. The week before my surgery, I spent many hours playing catch and shooting baskets with my daughters because I didn’t know when or if I would be able to do that again.

Then I went to UC San Diego, had my translab surgery and started the rehab process. About 2 months post op I was back to doing everything I was doing before surgery. I am sharing this with you so you know that there is a light at the end of the tunnel. We all know that no matter what form of treatment we choose that there are no guarantees.  However, you have an excellent chance of having a life post surgery that is just like your life now, only without the constant worry of having a brain tumor.  Also, don’t get too hung up on losing your hearing in one ear. Yes, it isn’t great, but I am honestly amazed at what I can hear with one good ear. (And that ear even has a little hearing loss in it)

I truly hope that I see a post on here sometime after august 23 saying that you had a successful surgery. If you have any questions about UC San Diego, or anything else that you think I could answer, I would be glad to try.
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm
Translab surgery at UCSD 3/17/22
with Drs. Friedman and Schwartz
BAHA user

bonnieD

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Re: Newbie
« Reply #9 on: July 01, 2022, 10:20:10 am »
Thank you all!  After reviewing several options, I still have UCSD as my top pick.  Three out of four doctors recommend that I get the Translab surgery.  One recommended radiation but that is baffling to me.  Anyways - for those that did go to UCSD, where did your family stay if it wasn't at their campus housing?  And if you did stay at their campus housing, how was it? 
Fall 2007 - Tinnitus started
June 2022 - 45 Yrs Old. Diagnosed left ear AN

2.3 x 2.2 x 1.6 cm

Symptoms:  Some numbness in left tonsil and tongue, pressure and mild headaches, more hearing loss, and dizzy spells.  Also... High MCV (enlarged red blood cells) but no cause. Anyone else?

donjehle

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Re: Newbie
« Reply #10 on: July 02, 2022, 12:40:45 pm »
Hi bonnieD!

I feel much better with you choosing UCSD as your top pick after reviewing several options.  Otherwise, you could have questioned, did I make the right choice?  Should I have gone somewhere else?  Should I have had Translab?  But by checking into the various options, you can have peace on what is right for you.

I have not had my treatment yet so I can't tell you anything from personal experience.  But I have heard some positive comments about the LaJolla house right there on campus.  Some said that they stayed there for the procedure, and one of the nice things is that family members could walk to and from the hospital without driving.  And then some people have transferred to somewhere by the beach for recovery and relaxation.  Again, I haven't experienced it personally, but I have heard good things about LaJolla.  Maybe someone with better knowledge can respond as well.
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.

Girldad

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Re: Newbie
« Reply #11 on: July 04, 2022, 06:51:59 am »
My wife and I stayed at the La Jolla house for the first week we were in San Diego. (Of course I was in the hospital for 3 days and 2 nights of that week). It is very nice and very affordable. They have different types of rooms, but the one we stayed in was a hotel style room with a recliner, which is where I slept because of having to keep your head elevated. I can’t think of anything more convenient for your family to stay at while you are in the hospital. There are some hotels close by, but none that are within walking distance that I am aware of. Some of the hotels do have a discounted rate through UCSD. I think you can find them on the UCSD website. If the La Jolla house is where you want to stay, I would suggest contacting them as soon as possible. They do not do reservations because they never know how long people will be in the hospital, so their family can stay as long as needed. We did not find out until about a week before that we had a room. We had a hotel reservation as a back up plan.

Our second week we stayed in an Airbnb close to the beach. This is all just personal preference. We enjoyed getting out in our own for the second week. If I had it to do over again, I would not do anything any different. Good luck.
Diagnosed 10/16/20 19.2mm x 14.7mm x 12.7mm
Last MRI on 4/27/21 19.2mm x 14.7mm x 13.8mm
Translab surgery at UCSD 3/17/22
with Drs. Friedman and Schwartz
BAHA user

donjehle

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Re: Newbie
« Reply #12 on: July 05, 2022, 05:47:56 pm »
Thanks for that reply, Girldad!  There is nothing better than someone with personal experience answering the questions!
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.

 


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