Retrosigmoid surgery Jan 9 NYU. Anyone do VT or neuropsych testing prior?

[rachelnyc]

Hi

I am scheduled for surgery Jan 9 at NYU with Golfinos & Roland. I have done a considerable amount of research as well as speaking with AN patients. My tumor is 2cm, left side and Ive been told 80%chance I will loose hearing. Ive been symptomatic for 5 years and misdiagnosed until november 2012.

To aid in my anxiety and hope for a fast recovery, Im trying to utilize as many resources as possible pre-op. I have a 4mo daughter and a new job lined up for me at the end of February. Im trying to get all my ducks in a row for a speedy recovery. I have appointments with a vestibular therapist and a neuropsychologist for baseline cognitive testing. Im hoping these resources will be vital in my recovery. Has anyone done this? A pre/post partnership like Ive described?

Any thoughts are most helpful

Rachel

[Blags]

Rachel- good luck with your surgery and wishing you a speedy recovery. I did vestibular therapy before and after. I'm still going roughly 2x a week. I think it is good to start prior to surgery so at least the therapist can see where your balance and issue lie priOr and how they change post.

[millie]

Rachel-Best wishes for successful surgery and a strong steady recovery.  My doctors were the same as yours, and I believe they are excellent.  I did not have the testing you mention; did you ask that the tests be done or did Dr. Roland ask for them?  Were the tests for balance and fullheadedness?
  I had translab since 60 per cent of my hearing was gone and it offered the best chance for facial nerve preservation.  I had some facial/eye droop after the surgery but it is getting better and some people say if you didn't know me, you wouldn't see the difference in my smile.  My left eye is blinking better, but not in sync with the good eye yet.  Ask the doctors if your lashes will get thinner in the AN eye-my lashes did.
 Don't expect to leap from the bed and walk on water like I did. You may have vision and balance issues for a few days.  I thought okay-get me into that hospital, get it out, get me up walking, and I'm out of here-but it's a little more complicated than that. The first few days were rough, but you do get better.  It takes time and patience.  And hope.
Millie

[leapyrtwins]

Roland & Golfinos rock!  You are in very good hands.

I had retrosigmoid in May 2007 but didn't have a vestibular therapist or a neuropsychologist before or after surgery.  My doc (neurotologist) gave me vestibular exercises to do both pre and post op and in my case they worked wonders.  I have a copy I can email to you if you'd like - just PM me your email address.

My outcome was very good - only lasting side-effect of surgery is SSD (single-sided deafness) and I opted for a BAHA 9 months post op; it's helped tremendously.

I was back to work part-time @ 2 1/2 weeks post op and full-time 4 weeks post op.  Everyone's recovery is different, so listen to your body and have patience. 

Hope all goes well,

Jan

[rachelnyc]

Thanks everyone for your responses and words of encouragement. The acceptance of my reality is slowly starting to sink in. I have good moments and then those sad ones. I know this is all normal.

I have spoken to a few people from the NYC support group. We've discussed research and cognitive changes associated with AN. The research is still minimal in this area. I myself have noticed slight symptoms such as: cognitive foggyness, word finding difficulties, literal paraphasia, short term memory loss. I just thought it was me. Then i discovered that other patients have shared similar complaints. They recommended getting a neuropsych evaluation and cognitive remediation. This is an attractive idea as I plan to start (not returning to work) a new job as a professor 7 weeks post surgery, and will need all my cognitive resources. (They are not aware of my surgery.)
The folks who did neuropsych testing postop suggested pre-op testing for a baseline measure. I believe this data may be invaluable and that is why I called and scheduled a neurpsych eval with Dr. Leo Shea (http://n-e-t-s.org/). Only problem is my insurance doesnt cover any of his fees (over 4k). Im in the process of researching other options.

I defintely plan to do the VT next week before surgery.

[Blags]

I definately have some word finding trouble. Didn't realize it may be from surgery. It's such silly things like trying to tell my son to get me something on the floor and not being able to get the name of it out but obviously knowing what it is and I end up using a different word or describe it and after a few seconds the word then comes to me and out my mouth. 

[Chances3]

Hi Rachel,

Bob here, I took vestibular therapy after surgery, it was helpful.  Once you have learned all the exercises, you can practice them at home, it will help in your recovery.  If there is anything I can do or if you just need to talk to another AN patient then please don't hesitate to call me, you should still have my number, if not just email me. 

If we don't speak, I want to wish you all the best going into this.  I know you have a lot going on with the baby and the new position - stay strong, it will all work out.

[millie]

Yes, Rachel, I have had  brain blips and also trouble finding the words to express what I am thinking-and it is very frustrating because I always prided myself on my vocabulary.I think it is emotional overload.

[It is what it is]

I wish good healing for you.  The brain blips I experienced after surgery are still improving after almost six months and the balance issues have also significantly improved.  Please keep us updated. 

Karen