Struggling 6 months out

[patstack]

Hello,

This is my first post, and have a number of questions. In July of 2017 I had a 2.5 cm tumor removed trans lab.  I am still struggling with dizziness and balance, and cogitative  issues.  I am  totally death in my right ear , and been having eye issues as well.  I was on FMLA but was terminated from my banking job when FMLA ran out.  I did qualify for the companies Long term disability, but only for 3 months, as my doctor thought I should be able to return to work after the 90 days. I am a commercial Lender, and have to filter through endless amounts of detail, which at this point I can't do.  My first question is, has anyone been on Long term disability do to this surgery, and if yes how long? And did your doctor support you on the disability?

My second question is about my hearing.  My doctor recommended  a Phonak Cross B hearing aid. Has anyone used this type of device, if so did it work? He also recommended  Vyvanse for my cogitative issues. Has anyone been prescribed this medication, and did it help. Finally, I would like to hear from anyone who is still struggling after the 6 month mark, with some or all of the issues above. As I mentioned my doctor feels I should be well on my way to feeling 80 to 100% better.  I feel like I am on an island out hear with no help.  Would love to hear from as many people as possible, feeling pretty depressed, need some help.

[Jill Marie]

Hello and welcome to the forum! I can't help you with your questions about long term disability or the hearing aid.  I should get one I just haven't done it.  I can help you with your eye issues if you tell me what's going on.  I can tell you that it's not uncommon at all to have issues 6 months after surgery especially with a bigger tumor such as yours.  A doctor can tell you what should happen or what he hopes will happen but we all recover differently for many reasons.  Don't let yourself get bogged down by thinking you should be doing better.  You've come to the right place for help, others will respond and help you with your questions.  There are some who don't post on here much anymore but welcome questions by sending them a message.  Get to know the board and read what you can about the questions you have by doing a search.  If you find a post that interests you message the person that made the post and see if they can help.  Good luck and keep posting questions and provide us with more info so we can help.  Take Care, Jill

[Rhcdad]

I have the hearing aid, I use it probably 20 percent of my life, it helps in groups or meetings and in general. Not the most user friendly device when one wears glasses and a hat at times. My recovery is still on going, maybe it will never be over until the end but unfortunately this is our world today post surgery and it's not great but somehow we have to keep moving. I get the confusion, separate feeling, but I also look around and kids/people deal with way worse than I do so that's what keeps me going. I don't think anyone understands what you are going thru but you, I have been doing yoga and it seems to give me something to work on. Try to find positive things and I will say that over time you will get better. You are not alone so stay strong and look for the little things, I hoping it will get better for you.

[Azona]

I am 11 months postop for retrosigmoid.  This is also my first post, as I came here looking for other answers. 

I'll answer the question you have about the hearing aids, I got them in September and found them very helpful, as my AN was on my left side, so riding in the car with my husband driving was frustrating, it helps me quite a bit.  I got the smaller of the two choices becaue I also wear glasses.  Right now I'm experiencing a lot of pain and putting the hearing aids in feels horrible, not that they hurt, just that I hurt a lot in the ear and the muscles, so I've been not using them.  Even so, I recommend them!

[Patti]

I have been on disability since 2002. You might look at me and not understand why, but I guess the doctors were supportive, because I was approved at each of my visits.  I have to say my neurosurgeon did not support it.  He thought it was a bad idea to go on disability.  I think neurosurgeons don't like the way disability reflects on their prestige.  My local neurologist supported it after listening to my cognitive problems and physical problems. I had extensive cognitive testing through the teachers' union and I had other cognitive testing through SS and from my medical team. I think it helped that I worked at other jobs over the years for a few hours a week.  Maybe it looked like I was at least trying. But the cognitive issues are there, yet they are more subtle now. I have learned how to live with them and change my lifestyle.  I have learned to say "no" a lot because now I know I am not superwoman.  Patti

[gunns]

Hang in there patstack!  We’re all survivors and consequently we're all on the green side of the grass!  This is a great place to get answers to questions and support. I had my tumor removed in July of 2017 also. Even though I turn 70 this year I’ve lead a very active life - hard work & hard play. I’m having most of the same issues as you. My balance is still messed up so I haven’t been back on my motorcycle yet. Can’t even play with my dog in the yard without constantly fighting to maintain balance. My dog must think I’m a klutz. I also can’t look up with out getting the dreaded wonky head. I’ve learned to step back a few paces to look up so I don’t have to tilt my head up as much. I know people have balance issues with certain carpet patterns. I don’t but I do with rocks. I’m not sure if you are familiar with the trail beds in the Sierras. They’re made up of rocks the size of grapes to large oranges. I can’t look at the trail bed with out my brain getting confused and messing up my balance. It just has problems processing what my eyes are telling it. Problem is I have paths on my property just like the Sierras. As a family friend with her own set of health issues advised, “Don’t focus on what you can’t do. Focus on what you can do or you’ll never be happy”.  It’s tough to follow but I try and I think it helps.  I’ve learned to try to adapt and persevere while maintaining my sense of humor.

Like you, I lost all hearing permanently on my left (AN) side and can’t determin where sound comes from. It drives me nuts!  I was also advised to get a cross B hearing aid. But after thinking it through it seemed I would hear all the noise on my AN side and I still wouldn’t know where it was actually coming from. It seemed it would just add to the noise clutter and confusion. I went with the Resound behind the ear and like my choice. There are two accessories that I use with it. One is a small microphone that my wife can clip to her shirt collar which allows her to walk on my AN side and carry on a normal conversation. It’s a bit smaller than a bic lighter - about 2” long. The other is an attachment to the TV that streams straight to my hearing aid through my cell phone. I can adjust the volume, treble and bass to my needs while my wife can adjust the TV volume to suit her needs. It works great and I don’t have to wear any device around my neck.

Still having a little trouble with my left eye but not bad. Occasionally it’s stuck shut when I wake up in the morning which is good I guess. At least I won’t dry out. LOL. I may be leaking CSF and we’re currently working on that. Just had a CT scan. I don’t seem to have any where near the energy that I had before surgery. I’ll be asking my doc about that at my next visit.

I hope some of this has helped and I wish you the best in life!