Author Topic: It's starting to really hit home...  (Read 14184 times)

Mimispree

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Re: It's starting to really hit home...
« Reply #15 on: February 13, 2015, 12:20:51 pm »
Hi Kathleen:

Thank you for sharing with me. Since your post here, I did try antidepressants that were supposed to help me sleep as well.  I didn't give them much of a chance.  I have PTSD, but after a couple of years therapy with a VA specialist and medication, I have experienced a new life for the last five years.  But I will note that post-surgery, because of feeling a bit more vulnerable, I am aware of some old behavior creeping back.  I think the depression I'm feeling is probably more post-surgery anxiety.  Fortunately, after two years of therapy I have some coping tools. 

On the difficult side, some of my coping skills are difficult to do now:  Hiking was a great tool; so was freelance writing and my work.  Unfortunately, I have been very dizzy 24/7 since my surgery and it makes it next-to-impossible to do any of these things and that is what creates my anxiety-depression. 

I hate complaining, but this forum is the place to do it.  I don't let my husband know how bad I'm feeling because I make an effort to remain positive around him. 

Anyway, I am happy that I have an eyelid weight and as of today I can blink my eye.  That's a great thing!

Thank you!
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

CHD63

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Re: It's starting to really hit home...
« Reply #16 on: February 13, 2015, 03:19:53 pm »
Hi Mimi .....

Just a comment about not hiking because of the 24/7 dizziness ..... It may seem counterintuitive, but actually walking (starting in a very safe place, like back and forth in your hallway at home) is the best vestibular therapy.  At first you might not be able to turn your head at all, but after walking back and forth numerous times, try turning your head from side to side (slowly at first), then up and down.  All of this should be done slowly at first, then increase the speed as you are able.

I about wore out the carpet in my hallway doing the above until I felt comfortable walking outdoors.  My case is a bit different than most, in that I have no vestibular function on either side.  I woke up from my first AN surgery not having a clue where up or down was.  I used a walker for a couple of weeks, graduated to a cane, and finally on my own.  You can overcome this too!

Ask your doctors when you go for your evaluation, but if I were in your situation, I would work very hard at getting back to hiking (two walking sticks are wonderful security).

Thoughts and prayers.
Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Mimispree

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Re: It's starting to really hit home...
« Reply #17 on: February 13, 2015, 05:39:07 pm »

Thank you, Clarice!  I do walk at least three or four blocks everyday, but I haven't been doing the head exercises you mentioned, so I'll start tomorrow.  Today I walked both dogs (one-at-a-time) and then gardened for an hour, then walked to the market.  I almost didn't make it home because my legs started shaking because of being dizzy, but I did it. 

My surgeon said walking was the best exercise, but it hasn't done a thing for the dizziness.  I am very much looking forward to consulting with everyone on March 9 & 10. 

Today I'm just happy that I was gardening (albeit while sitting) and I can blink my eye!  Major progress as far as I'm concerned.  But now, REST!

Thank you again!

Love,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

v357139

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Re: It's starting to really hit home...
« Reply #18 on: February 24, 2015, 08:28:10 pm »
I admire your spirit.  You will prevail.  Sorry if I missed it, are you working with a vestibular therapist for your balance?  That seems like a must.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Mimispree

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Re: It's starting to really hit home...
« Reply #19 on: February 24, 2015, 09:28:34 pm »
"I will prevail," I love that.

I am having four hours of balance testing on March 10, and then my medical team will create a customized, specific vestibular therapy for me.  They are going to work with the Physical Therapist who comes to my town twice a week, and then he's going to work with me.  I live in a tiny town in the middle of nowhere, so I haven't had any therapy yet.  After reading many posts, I am sure the therapy will work.

I tried the suggestions that Clarice provided me and failed horribly (but I'll keep trying).  That is hard!  What's really a bummer is that I was a professional dancer for years and you would think that I could pull it together on keeping my balance; I was a pirouetting Queen!  But I'm totally lost with this 24/7 dizziness.  I am counting on the therapy working so well I'll be able to reopen my bakery in April.  Keep your fingers crossed for me.

My eyelid weight is working out pretty well.  It's not too heavy so I have to concentrate to close my eye, but that way my eyelid doesn't droop and obstruct my vision.  He tightened my lower lid so now my drops and ointment don't run out of my eye.  I'm very, very happy and grateful.

I did start taking my anti-anxiety medication that I took for PTSD last Monday.  I'm not anywhere near as critical has I was before participating in a two-year study with a VA doc, but now that I know the medication will not change who I am or make me feel high, I'm willing to take it before my anxiety wins. 

They say to be thankful for everything that has happened to you because you will see how your experience can help others--but you can help yourself too.  Thankfully I learned how my PTSD can creep back into my day-to-day life, and about a year before my surgery I noticed some symptoms, probably as a way to deal with the Trigeminal Neuralgia pain.  Post-surgery my recovery has been difficult, mostly because of the 24/7 dizziness, so the creeping continues.  I am grateful because I've already learned that the medication works and I don't have to distrust it.  I would like to do a bit of talk therapy, but unfortunately that's not available where I live.  I learned great coping skills with the VA I'll lean on.

Thanks for letting me share.  I hope sharing my experience is helpful to others.

Be well,
Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

v357139

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Re: It's starting to really hit home...
« Reply #20 on: April 02, 2015, 07:59:23 pm »
Your experience will surely help others.  You have made progress.  More progress will come.  It might or might not be linear progress, but you will have more progress, I am sure of that.  I admire your perserverence.  Keep posting if it helps you.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

AJFunk

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Re: It's starting to really hit home...
« Reply #21 on: February 07, 2018, 06:46:06 pm »
Hi Michelle,

Your 2+ year old post here hit home for me.  If you're still active on the forums, I'd love to hear an update on how you are doing now that a lot of time has passed.

Best,

AJ
3 cm x 2.7 cm x 2.7 cm vestibular schwannoma
Translabyrinthine @ UCSD Jacobs Medical Center
Dr. Rick Friedman and Dr. Marc Schwartz 11/16/2017
Facial weakness Dec 17

 


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