post-op 15 months and here I am!

[Suzip]

Pre-Op I had come to this site and since then I come on regularly to see what's new, but never registered. Well I finally did.  In a nutshell- Surgery on 10/26/09 for a AN that was 3.5 cm., it grew back to 2.9 by Feb. 2010, so I had SRS in a single dose.  Just had eye weight and Canthoplasthy on 12/13/10.  Yes I have the balance,eye, headache,fatigue, etc..issues.  I have been working on SSDI since 10/09, now just waiting for a hearing.  I have read so many of the posts and identify with so many of them.  Half the time I feel like I have had a lobotomy and would love to have a normal day when this thing hasn't interrupted my life in some way,but you got to keep pushing on.
The radiation did stop the growth and actually shrink it some.  But even if this thing was gone the damage is already done to the nerve.  So I go to therapy once a week for my balance and try to teach my other body parts new things.  Like alot of you I waited for the magic 6 month marker and thought I would wake up to my old self.  But now I realize the doctor probably meant the healing from surgery was 6 months and side effects you may get are permanent.  So I learn to adapt to survive  ..well that felt good to get off my chest..thanks all

[Jim Scott]

Hi, Suzip ~

Thanks for choosing to be a part of the ANA discussion forums after being a 'lurker' for so long!

I'm sorry to learn that you're struggling with post-op/radiation problems but I think your attitude is constructive because you accept the reality of the effects from the surgery that you cannot change while working on adapting to the 'new you' and being the best that you can, physically as well as emotionally.  As we all know, post-op/radiation complications are a minefield for AN patients and can be daunting.  However, most find a way to deal with them while working to alleviate the problems that can be corrected, minimized or simply adjusted to.  You're obviously in the group that, as you stated, adapt to survive.  I think we all do that to some degree, even apart from dealing with AN issues.  Thanks again for joining the ANA discussion forums and offering your experience.  Oh, and anytime you have a question (or an answer to a question) or just feel the need to vent your frustrations, feel free to do so.  That's what we're here for: help, advice and most of all, support.  

Jim

[CHD63]

Hi Suzip and welcome to this forum.  Glad you found us, registered, and joined us!

It sounds like you have had some bumps in the road on your recovery.  Hopefully that is the end of them and you will gradually improve from here.  I am not a doctor but from the many posts on this forum, do not give up on seeing improvement after six months.  Many of us have experienced continued improvement for months, even years, later.  It is good that you are going for balance therapy.

I went to a trained vestibular therapist for months after my surgery because I have had surgeries on both sides and thus no vestibular function any more.  I can tell you that I am hugely improved from what I was at the six month mark.  I was still using a cane at that point but have not used it in at least a year and a half now (I am almost three years out from my surgery.).

Many thoughts.

Clarice

[leapyrtwins]

Suzip, I love lurkers (sometimes I lurk myself) but I'm glad to see you registered and posted.

Nice to "meet" you.

Hope you stick around   

Jan

[moe]

But now I realize the doctor probably meant the healing from surgery was 6 months and side effects you may get are permanent.  So I learn to adapt to survive  

Hi Suzip,
Yep you summed it up just about right about the permanent side effects. Doctors don't really understand the long term effects, because we don't go back to them.  

I though keep haunting my original neurotologist for this or that!  (I'm still a work in progress with the facial paralysis).

So keep truckn, pluggn, and don't give up about feeling BETTER. It is a part to full time job just getting through the muck  and red tape and treatments/surgeries to feel an acceptable "new normal."

I'm getting there, and it will be 5 years this June.

PM me if you would like more personal venting. What we deal with is our own silent disability. I don't even mention my tinnitus on my profile, which is really what brings me down the most (that is getting better though with my BAHA).

Good day to you!
Maureen

[wendysig]

Suzip,

I know that 6 month marker well.  Although I was fortunate not to have any major long term problems, I was also a little bit disappointed that the six month post-op marker didn't yield more results.  I still have minor balance problems with some days better than others.  Balance exercises do help, but unless I do them faithfully every day I take a step or two backwards after a very short time, and being SSD even with a BAHA can be challenging at times, although without it, it would be much harder to cope.  Your balance will continue to improve if you work at it, although it may never be as good as it once was.  Other issues may or may not improve with time and/or therapy.  Improvement doesn't stop just because you're six months post-op though.  There is always a chance things will continue to get better.

Hang in there and feel free to vent here anytime.

Best wishes,
Wendy

[ombrerose4]

Hi Suzip,

I am 16 mos. post op and I continue to improve all the time. Our bodies have gone through a major trauma and healing takes time. You sound like you have a great attitude and that will keep you going in the struggle to find the new 'you'. Perhaps we can never be the same person we were pre-op, but we can be better in many ways. We have learned to be strong, to have patience, and to understand that life can be challenging. But with the help of our loved ones and this forum, we continue
to heal, inside and out. 

[Captain Deb]

Hey, Suzip and welcome.
If you are having headaches, there is a section in post-op issues on headaches and a lot of information, links to medical sites, and advice from other people and their positive (and unfortunately sometimes negative) experiences. Currently a few of us are trying some more unconvention treatments that may have not been offered to you--we are kind of like guinea pigs for the rest of us.

Again, welcome and good luck with your disability claim.  I won mine after 5 years.

Capt Deb

[McFlorida]

Hello Suzip,

I appreciate your post.  I have been coming to this forum since my AN journey began in 2007.  Unfortunately, I am still on the path, since last month I was diagnosed with regrowth of my AN since my retrosig surgery in August 2007.  I'm beginning to show signs of now both 7th and 8th CN damage, and I'm considering my treatment options.  Most likely GK, in a single dose procedure.  I hope that you continue to post, because your shared experiences can benefit those of us following just behind.  I'm fighting the frustration factor now.  Your attitude is great.  I wish you the best, and thanks again.

Regards,
McFlorida