Author Topic: Hi Everyone !  (Read 2973 times)

pmcollings

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Hi Everyone !
« on: November 15, 2012, 07:04:15 pm »
I have been lurking on this site since I was diagnosed back in May 2012 with 1.8mm AN.  At first the stories on this forum really scared me so I stopped reading for awhile but then I realized the information and stories were very helpful for my "mental health". 
I am 2 week post-op Translab now.  What a relief it is to have gotten to this point.  I think the waiting and worrying was probably the hardest part of this whole process, actually.
My surgery went well.  I was 'under' for 8 hours.  My family tells me it took 4 hours to get through my thick skull- lol.  Once they were in there was a big blood vessel that they had to work around but fortunately they got all of my tumor out.  I was admitted for surgery on 10/30 and out 11/2 before 11 am CT !!!  My hospital stay, basically was uneventful.  I don't remember much in ICU except for the wonderful nurses.  Once I was in a regular room the nurses were a bit busier but I had no issues what-so-ever.  I was actually over the moon when I found out I was being discharged.  Then all the sudden my eye and tongue started to bother me. 
Today, I have 4th stage paralysis on my right side,which they say will improve.  I have to tape my right eye shut and put antibiotic ointment in it a few times a day.  My tongue is getting better.  I think I bit it but doc said I got a fungus, so I am swishing with this yummy numbing banana mouthwash two times a day.  My tongue is almost cleared up.  My eye.... well in the hospital the ointment they gave me I was allergic to, we switched to some other drops and I was allergic to those as well, so I did have a couple days of set backs.  It does not hurt anymore (when taped).  I am walking pretty good.  I had dizziness before the operation so I guess my brain adjusted to it but this is a bit different.  Not dizzy, just a little wobbly or unsteady.  I know this will too improve.  Doing one 20 walk a day since the day after I got home from hospital  and plan on starting on 2 tomorrow.  I drove to Walgreens yesterday to pick up my prescriptions but stayed in the car and did the drive through.  I am doing to try and drive around the neighborhood a little bit at a time.
All in all I am feeling pretty good, just a little tired.  I expected much worse.  What I did not expect was the eye issues. 
I was very fortunate to have my mom stay with me for 2 weeks but she is back home.  She has a bad back and does not drive very well, so it was good that I couldn't see very well when she was here - lol.  She is almost 80 so I am so very very blessed to have had her help.  I live alone and it does get lonely since she has gone but I don't have the depression I had before the operation. 
All in all I am very happy with my decision to get my AN removed.  It caused me to lose 50% of my hearing, dizziness, depression and it was growing so I know these things would have gotten worse. 
Thank all of you for writing your inspiring stories.  It has helped me so much  !!!!!  If anyone has any questions or just wants to talk I would be more than happy to lend any support I can.  I will try to be more active on this board, instead of lurking around. 
Please forgive my unprofessional written format.  I am an administrative asst and it just bothers me to see my run on sentences and spelling and such.  But you know what ............ there are more important things now.  Take care all !!!!
Pam
Diagnosed 5/2012 - 2.0cm
Translabsurgery  10/30/12. 
50 % hearing loss before op.  Total hearing loss after.  Partial facial paralysis
Surgeons - Dr Craig Kemper and Dr. James Kemper. Austin, texas

Jim Scott

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Re: Hi Everyone !
« Reply #1 on: November 16, 2012, 09:16:39 am »
Greetings Pam ~

Thanks for making the effort to register and post your first message on the ANA discussion forums..and what an uplifting message it is! 

Your AN experience is fairly typical; first the diagnosis, then the research begins and often, the fears begin to seep in.  The 'what if's' and the many questions.  The ANA discussion forums can be very helpful but many of our members are struggling with various post-op issues and until you realize that post-op/radiation issues are not inevitable (and often treatable and temporary) some of the messages can seem downbeat when, in fact, most contain useful information and generally optimistic attitudes.  These forums are a form of support for AN patients, both the newly diagnosed and the those post-treatment.  We don't pretend AN surgery/radiation is a walk in the park or avoid the fact that recovery can sometimes be a struggle.  However, we do emphasize the positive, so your candid, upbeat post recounting your AN experience is most welcome.

I'm very pleased to learn that your AN surgery went smoothly and your hospital experience was both uneventful and brief.  I'm delighted to read that your recovery is proceeding very well and that you're slowly regaining your normal lifestyle.  I wish you continued healing and look forward to seeing more from you on the ANA forums in the future.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

PamJ

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Re: Hi Everyone !
« Reply #2 on: November 16, 2012, 11:48:41 am »
Hi Pam I'm in the UK and had my AN removed by translab 18 months ago but I was stuck in hospital for 3 weeks with a few after problems.  I still can't drive and my 89 year old mum has been an angel and gives my husband a break from my moaning about not being able to drive yet.  My biggest problem is my eye and is still an ongoing problem but I'm tumour free and that's the important thing.   So glad everything is going well from you.     Pam
March 2011 - Acoustic Neuroma translab surgery
July    2011 - Tarsorrhaphy surgery
June   2012 - BAHA abutment surgery
July    2012 - Tarsorrhapy reversed
Sept   2012 - BAHA (Pronto Pro) fitted
Sept   2013 - Diplopia Surgery
April   2014 - Platinum chain surgery

Chances3

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Re: Hi Everyone !
« Reply #3 on: November 16, 2012, 12:09:58 pm »
Hi Pam,

As others have said here before, welcome to the other side of surgery.  Post op is different for everyone, as these nerves are very sensitive and the body can react differently.  You have a very good attitude so keep positive and continue to work on your recovery.  The members on this site are truly incredible and each one has a story to tell.  I hope you continue to find this site helpful, there are very few places where you can share with people who know what you are going through.  I wish you a quick and successful recovery.

God Bless,

Bob

LakeErie

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Re: Hi Everyone !
« Reply #4 on: November 16, 2012, 12:22:40 pm »
You mentioned an oral fungus, so you must have been on a regimen of post- op steroids to minimize inflammation and swelling of the cranial nerves. Once the steroids stop, it is not unusual to experience delayed complications from the surgery such as facial weakness.  As mentioned above, this weakness is often temporary, but often does require months to heal. Cranial nerves can take 12 to 18 months to regain their former state. Congratulations on getting the surgery behind you. If you don't mind, can you add some detail about where your surgery was performed?
When you are up to it of course. Good luck.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

pmcollings

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Re: Hi Everyone !
« Reply #5 on: November 16, 2012, 05:10:31 pm »
Thanks everyone for the friendly, uplifting replies.  What a great group of people there are on this forum. 
To answer 'LakeErie' post.  My surgery was done in Austin, Texas at Seton hospital by Dr. James Kemper and Dr. Craig Kemper. No they are not related.  I was on oral steroids during my hospital stay and then the pack at home.  I did hear this can cause the fungal problem.  Which really did not make any sense to me.  Seems like the steroids are the cure all- lol.  I guess not.  Tongue is continuing to get better.  I do realize my face will take some time and to not expect results over night. 
Jim Scott, you actually encouraged me to get in my car to drive after 2 weeks.  I have been following your posts and I thought well, if he could do it I should try.  I did.... twice now.  Not ready for the F1 formula race here tomorrow but slow and steady does win the race with that issue, so I do thank you for helping me out with that.
Pam J- your mom is an angel.  I'm so sorry to hear you are not able to drive yet.  3 weeks in the hospital?  Wow, that must have been rough.  I don't think I would be able to afford it.  But.... I know in UK the health system is quite different.  I, actually, had to get preexisting insurance.  I could not do this w/o it and I am so grateful that Texas was one of the states that opted in to the Obama preexisting insurance program, even though it ends in 2013.  I'm glad you have your husband there to help you. 
Bob - thank you for your encouraging message.  It means more than you know. 
All of you thank you for your responses - I feel so blessed to be a part of such a caring forum ! 
Pam
Diagnosed 5/2012 - 2.0cm
Translabsurgery  10/30/12. 
50 % hearing loss before op.  Total hearing loss after.  Partial facial paralysis
Surgeons - Dr Craig Kemper and Dr. James Kemper. Austin, texas

LakeErie

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Re: Hi Everyone !
« Reply #6 on: November 16, 2012, 07:52:57 pm »
Steroids suppress your immune system ( preventing swelling and inflammation in the cranial nerves. ) Suppressing your immune system also permits the fungus in your mouth to flourish. The fungal infection in your mouth is called Thrush.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017