Author Topic: Trying to get Used to this AN situation  (Read 10299 times)

ppearl214

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Re: Trying to get Used to this AN situation
« Reply #15 on: January 14, 2012, 07:59:22 pm »
Mindy, So you had CK and now you're going to have surgery? I was reading the stats on your post. The CK does what? I used to think it destroyed it, but now realize that is not correct.

CK, as well as other forms of radio treatments for AN's, have goals to help stop further growth... basically, stop it from growing any further.  Most forms of radio treatments for AN's have very high success rates with well over 90%.

As with most medical treatments in life, there are risks taken and we all hope for the best outcomes possible.  It doesn't always happen, as many here on the forums can attest, whether surgery or radiation..... we can only hope that our outcomes are positive. 

Mindy......   :-*  :-*  :-*

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mindyandy

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Re: Trying to get Used to this AN situation
« Reply #16 on: January 14, 2012, 08:29:04 pm »
Thanks Phyl
I am only taking the surgical route because I am having trigeminal neuralgia going on 3 months now. I tried the anti sezuire meds and am allergic to them. If I had no pain or numbness then I would watch and wait. Since I struggle eating everyday I feel this is what I have to do.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

mindyandy

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Re: Trying to get Used to this AN situation
« Reply #17 on: January 14, 2012, 08:33:26 pm »
Chance
yes I did have CK 4 years ago. I wouldn't call it a failure cause it increased 2mm well within limits, however I have developed trigeminal neuralgia because its to. touuching the trigeminal nerve
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

ppearl214

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Re: Trying to get Used to this AN situation
« Reply #18 on: January 15, 2012, 05:38:19 am »
Thanks Phyl
I am only taking the surgical route because I am having trigeminal neuralgia going on 3 months now. I tried the anti sezuire meds and am allergic to them. If I had no pain or numbness then I would watch and wait. Since I struggle eating everyday I feel this is what I have to do.

Mindy
Did you know CK is also used to treat TM?  As we know, TM is its own separate animal...... and sending you healing hugglez!  :-*
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mindyandy

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Re: Trying to get Used to this AN situation
« Reply #19 on: January 15, 2012, 10:01:29 am »
Phyl
I thought about CK again but im kinda to the point where I just kinda want to get it out so im not worried about it anymore. As scary as it is.
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

ppearl214

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Re: Trying to get Used to this AN situation
« Reply #20 on: January 15, 2012, 11:48:22 am »
Mindy

As you know, I never question anyone's decision and stand wholeheartedly beside you! :)  I knew CK was used in the treatment of TM..... just didn't know, for discussion sake, if you had considered it. No worries..... I know you are truly doing what is best for your and your very unique situation! :)

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Susan A

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Re: Trying to get Used to this AN situation
« Reply #21 on: January 15, 2012, 08:18:58 pm »
Susan--The classroom has not been that bad so far. 3rd graders are pretty tolerant of the situation. I too make sure to have the working ear toward them when doing small group work. Is your hearing aid in the ear that has the tumor? I tried one in my good ear. They hoped it would compensate for the loss on the other side by improving the good ear. It had no effect; therefore, I returned it.
Yes, my hearing aid is in my bad ear. It's supposed to boost the frequencies that I've lost. My good ear really has a very normal range of hearing so I can't imagine a hearing aid on that side would have had any effect at all.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Syl

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Re: Trying to get Used to this AN situation
« Reply #22 on: January 16, 2012, 11:44:19 am »
Chance1212:

In my experience & from what I've learned on this forum, the damage done on the hearing & balance nerve is not reversible. The facial nerve seems to be the most resilient of the 3 nerves affected by an AN.

Luckily, the vestibular system is made up of more components that compensate over time for the loss of the one balance nerve. In my case, the balance nerve was removed. But by the time I had surgery I had already noticed less dizziness. I used to get vertigo every time I stood up. I don't get that anymore. My balance has also improved. I don't walk like a drunk so much anymore, except when I'm really tired.

My word recognitions is at 20%. The surgery actually damaged it more from my 60% pre-op hearing test. But that's OK because that sucker had to come out before it did even more damage. And since the bigger the tumor, the more complicated the surgery. For me, that tumor had to come out. One Dr told me that inflammation of the tumor alone can cause nerve damage.

As for the tinnitus, having a hearing aid seems to help mask the tinnitus. I keep reading somewhere that reducing my caffeine consumption would help ease the tinnitus. I don't think I'm ready to give up coffee yet. My tinnitus is always present, but I think I have gotten used to it.

That stuffed up feeling in my ear has gone away. Right now I have a cold & only my good ear got stuffed up really bad.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Cindyswart

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Re: Trying to get Used to this AN situation
« Reply #23 on: January 16, 2012, 03:13:42 pm »
Hi there, I have been reading this thread and thought to add my two...My first symptom was imbalance issues and numbness in the right side of my face. Although these tumors are touted as slow growers, my was a real overachiever!! From April till August, it grew to three times it's normal size and had to go!! At Surgery I presented with imbalance, right side facial numbness, tongue numbness and taste issues, 75% hearing loss, fullness in the ear, and some headaches. Now, 20 weeks post op, I have been back at work full time for 16 weeks, no balance issues (except with the help of White Zin or Bailey's Irish Creme!), Facial numbness is checked up to 95%, Some tinnitus, a numb area, approx 3" x 2" still tingly on my head, and I finally have a real haircut ( one that covers the scar behind my ear) that is text book correct! And I don't get up every morning and think about this journey. I have a lot to be thankful for. My biggest loss is that I am SSD on the right side, but that is now a minor thing and I adapt quite well.

Long story short, there is life after your questions are answered. I attribute my positive journey to a surpurb medical team, a supportive family and God. I felt quite relaxed as soon as I had a plan. that was a milestone for me. And don't be derailed by the potholes, I had one. At 11 weeks, my incision area abscessed and I was rushed to emergency surgery to repair! 4 more days in the hospital and another shaved portion on my head!! ??? But... I was back to my life very quickly and now life is back to normal, my normal. I do anything and everything that I choose!! PM me if you want doctors names or if you want to discuss.
Diagnosed 4/19/11 An 1.5x1.9x2.0
Surgery 8/23/11, Dr Fukushima.
Total tumor removed. SSD.
Second surgery 11/11/11 for abscess

I'm gona work like I don't need the money
I'm gona laugh like I'm not afraid to cry
I'm gona dance like nobody's watchin'
I'm gona love while I still have the time!