Author Topic: Resisting Bitterness  (Read 4149 times)

robertweeks

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Resisting Bitterness
« on: July 09, 2016, 04:22:40 pm »
Hi All,

I am exactly one-year post trans-lab.  One year ago today I was in St. Vincent's in LA with House Clinic.  At the 11th hour, after arriving in LA, they switched me from Retrosigmoid to Translab because they revised downward my prognosis for success with RS.  Prior to surgery I had symptoms of headaches, exhaustion, general malaise, tinnitus, partial hearing loss (right), unable to make it through the day without lengthy naps, balance issues.  Before realizing I had AN, I had left work because I felt I could no longer do a decent job there.

Following surgery, for about 5-6 months, symptoms have been: headaches gone, exhaustion largely gone, but..., malaise largely gone, but, tinnitus much less to mostly gone, total hearing loss on right side, sleepiness gone, balance issues continue, though less than before surgery, facial muscle issues on right side ongoing since surgery.

In 5-6 months post surgery I felt I was making progress with balance and facial impact and felt reasonably optimiztic.  I was on disability until December at which point I went off of it as I was making progress and thought I would be able to look for work soon. 
In the most recent six months I feel like my recovery progress has basically stopped.  Right side of my face continues affected -- right eye droops/wants to close, right mouth corner dribbles a little.  Friends tell me its not very noticeable, but I sure notice it.  Balance issues continue.  Several weeks back I had a full on fall due to loss of balance in the dark.  I came away from that feeling very angry that I was not doing better.  I also continue to have a sort of bobble-headedness, a feeling of cloudiness or slight pressure inside the head.  This gets worse when I walk, as opposed to lying down or sitting.  It makes me somewhat unstable on my feet, and contributes to ongoing tiredness when I try to be active. And it makes me feel rather dull and slow-witted.

I am unhappy with the lack of progress in my recovery.  I made the choice to have surgery and there have certainly been some benefits from doing so.  But in some ways, it appears that I am simply not recovering.  I have enrolled in tai chi and that does, at long last, appear to be helping me find a little improvement, although I am still dissatisfied.  I have not gone back to work because I haven't "recovered" yet, because looking for work seems very daunting when I am still not well, although things are "better".  Since I said in December I was "better" and chose to go off disability, I have been told I can't reinstate it.  My finances are going steadily downhill. 

I have let the disability thing lie because I don't want to be a parasite, because things are "better", and because those little voices in my head say that I am whining and should just buck up and get over it and not make such a big deal out of this.  But I cannot go forever without going back to work and I still don't feel as competent as I would like to feel in going to look for work.  I am 60 years old. 

As I said, I chose to have the surgery.  It was my decision, my responsibility.  I made the best choice I could given the available information.  House Clinic treated me very well and did a good job and I am not trying to lay any blame.  But I cannot deny feeling discouraged about this whole process and my lack of continued recovery.  House Clinic did tell me my recovery would be five months at the outside, but I think they were being overly optimistic.  It is what it is. 

I'm not sure what I am asking for here, though I am certainly asking for something.  I would be interested to hear from others with lengthy recovery.  I would also like to know if I can qualify for some measure of disability, since this seems to be going to go on indefinitely, and, if so, how do I pursue that when I am "better". 

Thanks very much for your thoughts and effort. 

JML

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Re: Resisting Bitterness
« Reply #1 on: July 09, 2016, 07:32:22 pm »
Hi Robert. I'm so sorry you're having a rough time. I didn't have surgery (had GK) so I can't be much help to you with that, although I do believe that it can be quite some time before things get as good as they're going to get, so please don't give up hope. Have you told your doctor that your progress seems to have stalled? If so, what did he say? If not, I'd do that.
As for disability insurance, if all else fails a good attorney with disability insurance experience could possibly (probably) get you the help you need. Best of luck to you with that and prayers for a continued recovery.

Tod

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Re: Resisting Bitterness
« Reply #2 on: July 10, 2016, 05:09:29 pm »
Robert, I'm sorry for your difficulties. From my perspective, even though I was able to go back to the office after three months, it was on an abbreviated schedule and it was well over a year before I felt like I really wasn't disabled and it was another year that I felt that I could pass for normal. I carried a letter of from my surgeon because my balance was and gait were wobbly. In fact, it was what drove me to downsize from a truck to a car. However, I kept working on my balance by walking as much as I could, relying on the Wii balance board games, and setting challenges for myself like juggling up and down stairs.

Your body, unfortunately, has its own calendar for recovery. All you can do is keep taking care of yourself. Walking and balance activities are critical to successful recovery.

As for disability, it is tough to qualify. It all depends on your symptoms and what the doctors say. My wife just qualified for SSDI after two submissions based on her connective tissue disease and crippling symptoms. Despite the severity of her issues and being on over 20 daily prescriptions, it took two applications - and they "found" that she was "officially" disabled as of her 50th birthday, even though she had to stop working two years earlier.
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

robertweeks

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Re: Resisting Bitterness
« Reply #3 on: July 14, 2016, 11:05:50 am »
Thank you Tod and JML.  I appreciate your time and responses.  My physical therapist is encouraging me to pursue disability, so I think I will be looking into that.  I think I could be more patient with the overall process if the financial worries were not hanging over my head as well.  My tumor was not nearly as large as yours, Tod, and my surgery was not traumatic.  The tumor was a little unusual, I'm told, because, instead of being adhered to the surface of the auditory nerve, it was buried down inside the nerve, which is why they switched me to translab from RS.  Human resilience is a remarkable thing and, Tod, you appear to be a good example of that.  Thanks again to both of you. 

Rhcdad

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Re: Resisting Bitterness
« Reply #4 on: July 14, 2016, 06:55:18 pm »
I am 9  months removed from surgery. Totally deaf in left ear with some reduced hearing in my right ear. I now wear hearing aids. I have constant ringing in my ears, and my face is still a mess on my surgery side and I cannot close my surgery side eye at all. Have balance and taste problems, lip numbness on occasion. I went back to a very demanding job 12 weeks after surgery and recently have had my job responsiblities greatly increased. I just refuse to give in to it. I am riding my bike back and forth to work some days and just did a tough 20 mile ride with some friends. I have come close to a couple issues on my bike but so far have been lucky. I have moments of complete frustration were I want to give up but will not. I keep pushing myself through it, I feel so blessed in so many ways, I have become a better person since these challenges have been thrown my way. I often think of young kids who have things soo much worse than me for there entire lives and get up everyday with a smile  and push through. If they can do it I have nothing to hang my head about. I am hopeful for improvement in the areas I mentioned. Please push through and find the strength, find a way to motivate and get through, please stay positive I know you can get through it!
2.54 cm tumor
TransLab @ House Clinic
Surgery 10/27/15
Numerous Post Surgery Issues

Tod

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Re: Resisting Bitterness
« Reply #5 on: July 14, 2016, 07:41:48 pm »
You're welcome, Robert. Hang in there. We're always here if you need someone to talk to and anyone is free to direct message me for private discussions. We don't always like to talk about our weaknesses and frustrations in public.
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

robertweeks

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Re: Resisting Bitterness
« Reply #6 on: July 22, 2016, 05:28:43 pm »
Thank you RHCDAD.  I am glad you are able to "power through".  I have tried that and found it less than successful.  Not that I could not fake it quite well sometimes, but, overall, I concluded that it was not fair for me to expect my employer and my employer's clients to have to pay the cost of working with someone who, on an ongoing basis, could not really provide optimal service.  That is why I chose to leave my employer and why I now find it difficult to consider a job search when I do not feel that my performance is adequate.