I'm back

[Mary More]

Hi everyone,

I apologize for not keeping you posted earlier. If you recall I had my AN removed on October 28.
It has been quite an adventure. Just to recap. As much as I tried to have radiation rather than surgery, surgery it was due to the size 2.6 cm and being cystic. I must say that Everyone at the hospital was great from the surgeons to the orderlies. On the morning of the surgery while in the operating room I reminded Both surgeons, that if the AN was too tangled on my facial nerve, just to de-bulk it,that I didn't want to have facial paralysis. Well they kept my nerves electronically monitored, and after 11:30 hours they had to keep a bit of the AN on the facial nerve in order not to sever it. I guess they we're right, a cystic AN is radical and can grow very quickly, from the time of diagnosis to the last MRI and surgery 2 1/2 months it grew from 2.6 to 4.3 cm.  I stayed 3 days in ICU rather than 1 and 10 days rather than the 5 I was told in the hospital. Nausea, vertigo and imbalance was no fun. I found a sure fire weight loss plan, I lost 12 lbs in 9 days (I was already slim at 123 lbs) I've offered the brain surgery weight loss plan to many but no takers. Geez I wonder why? Pain and headache were never an issue. I guess I was lucky for that, I didn't have to take pain killers much. Fatigue was a huge part of the recovery.
I have been doing vestibular rehabilitation at a rehab centre twice a week since mid November.

 Well even with facial monitoring two days after surgery my facial nerve paralyzed due to all the stress and swelling. Facial parlays is such a drag, eating, drinking, talking and even brushing my teeth is a challenge. My neurosurgeon is very confident that this is temporary, he says up to 18 months.  I have seen a Ophthalmologist because my eye doesn't close and we discussed putting in a gold weight. But I have not scheduled having it put in yet as there is a bit of improvement ( when I saw him my eye had no protection, it did roll up to protect its self, but does now and if I look down my eye lid follows. I still can't close my eye but I don't want to put in the gold weight if I don't have too.

I will have to do radiation but not for at least six months my Dr. Wants my facial nerve to heal first because doing radiation on a weak nerve can destroy it, and he want to put the odds in my favour. So for now I will be doing lots of MRIs till he is confident

I'm not back at work or driving yet because bright lights and colours still bother my eyes, the ointment I have to use to keep my eye moisturized blurs my vision. I am scheduled for a follow up with both Drs on January 16th I have a few questions. One thing i find strange is that two months after surgery my incision is now starting to bleed a tiny bit. I am doing better now but not back to myself yet.

Again I apologize for not putting you up to date earlier, my moral wasn't good for a while.

Thank you all for you support.
Mary More

[Brytink]

Ms. Mary I'm a 24 year left AN survivor, Bells palsy , deaf, and I to put oninment in my left eye but mine has been like this from day 1,  I came out of surgery 24 years ago with all of the above.  I'm doing great had to learn to adjust to not being able to chew on my left side and drinking with a straw all the time but i'm use to it now.  Thank God I'm Alive!!!  my son was 8 months old when they found my tumor.  Praying for you a Speedy Recovery and many Blessings.   Tina

[Jim Scott]

Hi, Mary ~

Its good to see you back on the ANA discussion forums but I'm sorry to learn about your post-op complications.  You would appear to be coping as well as anyone could be expected and I intuit that your recovery is making small but steady progress.  As you know, when to comes to AN surgery recovery, time is on the patient's side. 

You've been missed.  Mike D. was especially concerned about you but now that you're back, all is forgiven. 

Jim

[Mary More]

Jim thank you for your words of encouragement. Everyday I remind my self of how lucky I am and thank God for my youngest daughter's insistence that I go get a hearing test and a hearing aide. I had been losing my hearing for about six years, but didn't want a hearing aide ( geez I'm not that old), as a friend told me, I must have someone watching over me, cause its a miracle that I Finlay decided to have it checked when I did considering how it suddenly had a growth spurt. Three years ago I saw my ENT who suggested I get an MRI, but I believed I only need to have an MRI done in order to get a hearing aide, so because I was not ready to get a hearing aid I did not need to do an MRI. How I regret not doing it then.

I am taking the time to recover and hope to continue seeing progress.

I'm sorry about worrying everyone. I really should have commented earlier. Thank you so much for all the support you have all given me.

Mary

[Mary More]

Tina,  I can't imagine being told at such a young age and having an 8 month baby that you had a brain tumour, It must have been terrifying. I hope your recovery other than Bell's palsy was rapid, and that you had a lot of help. How did you deal with it. I am so glad to hear that you are doing great. You are an inspiration.

I too am deaf on my right side, I had some hearing initially after the surgery but about two weeks later it was gone. That really doesn't bother me, I still have one good ear and my hearing had gone down over a few years. I guess I'm used to it.

What I find really difficult is not being able to laugh and smile the like before. I always had a smile on my face, people often commented on that and how I was always happy. Now, I feel like that was taken away and my face no longer shows how I feel. knew this was a possibility, my surgeons explained it me, even making a joke that I might smile like Jean Chrétien, our ex-Prime Minister (I'm Canadian)he too had Bell's palsy when he was young and is deaf in one ear, this did not stop him from becoming our country's leader. I am a little more self conscious but I will get used to it and This will not stop me from laughing and being happy.

I have to tape my eye shut every night to protect it. Do you still have to or are there other things that help. I ordered a humidity chamber on line and it was very uncomfortable can anyone recommend a brand.

Mary

[Echo]

Welcome back Mary!  I've been watching for your follow up post and hoping things were okay.  You've certainly had a difficult time of it.  Hopefully the worst is over and you can now move forward in your recovery. 

How's the vestibular rehab going?  I've been going once every 3 weeks since July and find it rather challenging.  Some exercises I can move through relatively quickly and others I've been stuck on for months. 

Take care and update us when you are able. 
Cathie.

[Mary More]

Hi Cathie,
Again sorry about the delay. Thank you for asking. I'm sure the worst is behind me now. I just stay positive and move forward. I have to get used to life in a different way now, as difficult as it may be sometimes, I put a positive spin on it and think " it would be a whole lot worst if it were cancer.

As for rehab, it's going very well. They have me doing a lot of challenging exercises. Like you I have moved quickly through some but I am stuck on others eg. Standing on one leg.
 When I was at the hospital the doctor, nurses, occupational as well as the physio therapist told me I had to go to rehab for a few months. But in the daze of it all I never asked more, eg. Where? So I figured I had to find it myself and go private. The day after I got home I  was surprised to receive a phone call from The Local Community Health Center stating they received a refferal from The Neurological Institute regarding my surgery and they were informing me about all the services available if I needed help at home. with baths or meals etc. I didn't need but I have a year from the surgery should things change. The following day the rehab Center called to schedule an appointment and that if I couldn't get a lift, they would provide taxi service. It is fantastic that the hospital took care of all that. This sure got rid of a lot of stress. Who knew all these services were provided to us. For a not perfect health care system, it worked very well for me.

How are you doing so far after your GK treatments?

Mary

[Echo]

Hi Mary,

I'm doing quite well overall since the Gamma Knife Sept. 11.  Like you say we "get used to life being different, keep positive and move on".  My balance issues are not improving yet, but it's early.  I am having more trouble with my occulomotor skills, which does have an effect on my balance.  Buildings tend to jump sideways visually when I'm walking.  Christmas time was very challenging with all the trees and houses lit up at night - absolutely everything jumped around when I went out to walk the dogs at night!  I need to keep putting drops or gel in my eye through out the day as I do have some dry eye issue and I still have the transient numbness in my tongue that comes and goes. Otherwise I'm doing quite well and not experiencing any adverse side effects. 

You are lucky to be getting so much help for your rehab.  OHIP (Ont. Gov't. health plan) changed physiotherapy eligibility several years ago.  I believe it is covered if there is a need for physio post surgery, but otherwise you are on your own.  I have corporate coverage at work, but it's very limited. The problem I've run into is standard physiotherapy in Ontario is based on half hour appointments at $85.00 per visit.   My vestibular rehab is based on one hour appointments at $120.00 per visit.  The insurance company does not recognize one hour visits, so they are only willing to cover me for the $85.00 per visit and only up to a maximum of $500.00 per year.   While it's rather frustrating, I'm not going to complain as OHIP has totally covered all my other expenses related to and including the Gamma Knife. 

I hope things continue to steadily improve for you.  You've certainly had a rough go of it.  Keep that positive attitude, it will help you immensely.

Take care,
Cathie.