Author Topic: Paralysed in fear - please help  (Read 3503 times)

Be-gone-Noma

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Paralysed in fear - please help
« on: November 05, 2021, 09:13:06 am »
Hi everyone,

I was diagnosed a year ago now. I have a 2.2cm x 1.5cm. Half in IAC & half in CPA so only just touching brainstem with no compression. I still have very good hearing.

I have had a number of consultations with different surgeons (including Dr Friedman from UCSD & Dr Chang from Stanford). I have had so many different recommendations of what to do..translab, retro, GK & CK. I’ve become paralysed in fear & anxiety. Once again I’m up in the middle of the night not being able to sleep freaking out about what to do.

Recently I’ve had new symptoms which have included feeling a tight feeling in my cheek on the effected side. I actually think I can feel that side of my face may be a bit weaker but you couldn’t notice just by looking at me.

I had surgery booked for 4 months ago but pulled out. Surgery has been rescheduled for next month instead…but I’m so scared these unusual feelings in my face on the AN side will guarantee me paralysis after surgery. I may pull out of surgery again thinking GK may be better at saving my face??!! Im only 36 though so I’m extremely worried about being too young for radiation.

How do you decide on treatment????!!!!!! I’m constantly flipping!!!! I know this AN is doing damage sitting in there. Please any advice on how to decide??

Thank you

Greece Lover

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Re: Paralysed in fear - please help
« Reply #1 on: November 05, 2021, 09:29:22 am »
What you're going through is very tough but very real.  I obviously am not a doctor, but I have very similar sensations on my AN side of my face leading up to my surgery.  My doctor told me it was most likely just in my head, not related to anything the AN was doing.  He was right.  I've conversed with other people on here who have had similar experiences.  It doesn't mean we're crazy--anxiety is an expected part of this whole process, and one of the most overlooked. But, don't talk yourself into something that probably isn't there. (easier said than done!)

I have seen a therapist occasionally throughout this journey and found it to be super helpful. 

Good luck!
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.

Be-gone-Noma

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Re: Paralysed in fear - please help
« Reply #2 on: November 05, 2021, 11:31:06 pm »
Thank you Greece Lover for replying.

Yes..I am realising I need help with the anxiety all this is creating. It’s awful!!


Greece Lover

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Re: Paralysed in fear - please help
« Reply #3 on: November 08, 2021, 08:17:08 am »
There are people who can help! Seek them out!
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.

SP

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Re: Paralysed in fear - please help
« Reply #4 on: November 11, 2021, 02:42:27 am »
It's a very difficult decision to make and understandably induces anxiety and fear. I took a long while to research my options and had lots of conflicting advice from neurosurgeons and radiation specialists around the world. I did feel relieved once I made the decision to go forward with CK. It was a big decision and a big journey and I am very grateful that I made it now. Personally I was really fearful of surgery effects and chose to go radiation option (age 43). Dr Chang and the team at Stanford were exceptional.
Take the time to consider the best option for you , at the end of the day , every ones set of symptoms and circumstances are unique.

best,
Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

CA Marti

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Re: Paralysed in fear - please help
« Reply #5 on: November 12, 2021, 02:45:30 pm »
I know exactly how you feel. My neuroma was last measured at 10.5X8.5 6 months ago. I seem to have some right eyelid droopiness that is very subtle and also very rarely some chin twitching. Every doctor tells me it's unrelated so it's confusing. I also have a hard time deciding between radiation and surgery. The way I was going to decide was if I have slow growth on next MRI then I would opt for gamma or cyberknife. If I have more rapid growth(i.e. more than 2.5 mm per year) then I would opt for retrosigmoid to try to save hearing, but translab if my hearing is already mostly gone. I'm doing this because I've heard radiation has a bigger chance of not being successful if there's rapid growth. I personally am leaning toward gamma otherwise because the facial paralysis stats and other risks seem lower in comparison to surgery and becuase surgery scares me. Yours is slightly bigger than mine at this point however, so you may have different things to consider. Almost all of my doctors suggested gamma for me except Dr.Friedman, so that helped in my decision. I also found it helpful to have a consultation with Dr.Link at the Mayo clinic because I figured he'd have an unbiased decision not favoring surgery or radiation. Dr. Link also suggested gamma if there's growth. I don't think feeling facial sensations now means you'll definitely have problems after treatment, however. I also wouldn't assume it's all in your head. I did feel better when a facial specialist said that there could be facial twitches even if it's not a facial neuroma because I was worried mine was a facial schwannoma since I had some facial twitching. I would listen to Dr.Schwartz and Dr. Link's recommendations as I found them to be trustworthy and helpful. Best of luck in your decision.
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

notaclone13

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Re: Paralysed in fear - please help
« Reply #6 on: November 12, 2021, 05:48:11 pm »
Hey CA Marti,
It’s interesting you note some drooping of your AN side eyelid. My AN is on my right side and I also told my neurosurgeon that my right eyelid seemed more droopy than my left. I told him I thought it was because the AN was pressing on my facial nerve CNVII. He explained that 2 different nerves control movement of the eyelid and that opening of the eye, meaning raising of the eyelid was controlled be CN III, which is not usually affected by an AN. Closing the eye ( or lowering of the eyelid)  is controlled by CNVII which is often affected by an AN on neighboring CNVIII. That’s why AN patients have problems closing their eye after surgery, which is just the opposite of having a droopy eye. He said my droopy eye is more likely to be from some other issue and is just a characteristic of my face. Since he mentioned that I’ve been paying a lot more attention to people I see on TV and I notice a lot of faces have one eyelid droopier than another. Most faces are not perfectly symmetrical.

CA Marti

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Re: Paralysed in fear - please help
« Reply #7 on: November 13, 2021, 02:12:51 am »
Hi Notacione13,

Thank you for that information. I have had doctors tell me that all faces are not perfectly symmetrical before. It just seems like such a coincidence that it happens to be on the same side as the neuroma. I would love it if it really wasn't related at all. It's just at the corner of my right upper eyelid where it seems like there is more loose skin on the upper eyelid causing it to droop down a bit more than the other eye. Of course I am super paranoid that it is neuroma related but it's nice to think that it could possibly be not related. I know I should try to stay positive, and it seems many people on this forum have had nervous face twitches, under the eye etc. and I suppose those could be just stress and lack of sleep related as well.
Marti


Diagnosed 5/28/2021 10.5mmX8.5mmX6mm
Next MRI   11/22/2021 10mmX8mmX6mm
MRI           12/9/2022   5mmX6mmX7mm

RayDe

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Re: Paralysed in fear - please help
« Reply #8 on: November 15, 2021, 12:30:24 pm »
My situation (AN) was very similar to yours in many ways. Size, location and symptoms.  I had Retrosigmoid surgery on 4/30/21 performed By Dr John Lee in Philadelphia Pa.  Im relieved its totally resected and out of me.  No facial issues at all. I did lose my hearing and have Tinnitus in my left ear. My headaches are gradually subsiding. Tylenol always did the trick. BUT! after 6.5 months into my recovery I still have Disequilibreum and its pretty disturbing at times. And still have some pain and stiffness at the surgical site. Im finding it a difficult recovery. You really need to be patient I'm learning. Best of luck with all.

judyl

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Re: Paralysed in fear - please help
« Reply #9 on: November 19, 2021, 01:28:27 pm »
RayDe, Have you attended the Phila. Support Group meetings?  The last one was this past Saturday. I am one of the Judy's. I am Watch and Wait right now.
Judy L.
11/2/17 MRI w/o contrast for positional vertigo-1.3 cm mass in left IAC
11/8/17 MRI with contrast - AN 1.4 cm x .5 cm x .4 cm
5/23/18 MRI w/o contrast 1.4 cm x 0.6 cm x 0.5 cm.
11/2018 and 11/2019 MRIs stable
6/2021 and 8/2021 MRI AN 1.2 cm x .5 x .5 and new pituitary microadenoma