informal survey....

[matti]

The only regret I have is not being more persistant with the doctors that I saw early on in my symptoms. I was misdiagnosed for almost 2 years. I always wonder how things would have turned out if I was diagnosed from the getgo :-\   But that wasn't what was planned for me.   I had one week from diagnosis to surgery and I have never questioned my decision to do it.  I was told that if I did not have surgery, I would not be alive past 1 year.  I do live with SSD, some facial paralysis and other AN goodies, but I am doing OK.

Good question Michelle

[Crazycat]

I would have gone much sooner if I had insurance. I had to wait until I got insurance for treatment. Almost died because of it.
I lost my mother 1979 because she had no insurance.

 Ã‚              Paul

[Karla83401]

Hi,

I am getting better at reading posts and being able to respond. Although I am only about 5 1/2 weeks post treatment, I am glad that I made the decisions that I did. Each day it seems that something new comes up that I had not realized was a problem post surgery until that very moment. But I tell myself that at least I am here to raise my children, which may not have been the case without treatment. I really don't think that anyone can go through the AN experience and come out the same after treatment but hopefully we all come out stronger on the other side.

Hugs and Kisses to all,

Karla

[cookiesecond]

Karla,
It is so good to see you posting. You are still in my thoughts and prayers.
Lynn

I wouldn't change my decision for treatment. I had a great team of doctors and a great support team. I'm at 10 months post op and am now back to feeling like I did before treatment.My pre op symptoms were severe hearing loss and vertigo. I still have ssd and balance issues. I am hoping my balance will continue to improve.But... without tratment I may have more issues by now.


I do kinda wish I had gone to the doctor earlier. I knew something was wrong, I was just scared to find out what it was.Fear is crippling at times.

[Captain Deb]

I find living in a "what if" state of mind to be quite detrimental to my emotional health! I just want to get over it and do what I need to do for myself, my loved ones, and my friends TODAY. I try to stay focused on the NOW part of life and live in the moment.
Capt Deb

[Static]

I know I wouldn't have done anything different.  I wanted that sucker out and it had to come out being it was pressing into my brain stem (had the sucker smushed  into a third of it's normalcy).  I wish I had a more realistic view of what was probably going to happen to me.  I thought more of a, not me, I'll be fine, but it wasn't the case.  Mind you, I didnt' have things I've read others have run into, but I just wasn't prepared to not be able to walk without a walker or someone holding me so I didn't fall over.  Trying to make the best of what I've got..............sh!t happens, life goes on!!!   

[Battyp]

Yes,  I agree with you both Deb and Static...life goes on and somehow we endure and adapt!

Karla it's so good to see you posting again!

Lynn made a comment about being 10 mos out and just now feeling normal...I'm still waiting for that to happen.  I told my  mom yesterday on our drive home that I feel like if my face would "wake up" I'd feel normal again and could adapt to the drunken sailor walk.  It's the speech thing that really gets to me.  The foggy headed feeling 

Funny I haven't seconded guess my decision with my surgeon choice or the choice to have surgery.  I know I didn't have a choice at the time so was surprised when the surgeon asked.  I met a man yesterday that was in a lot worse shape than I was.  He had a bad car accident and was disfigured.  I know my situation could be a lot worse than it is and am thankful where I am.  Scared but thankful.

[cookiesecond]

Batty,
I do have that foggy feeling at times... Do you ever have pressure on the back of your head?The doctors say it is hard to tell what comes from my neck and what comes from the surgery. My neuro  otologist says the nausea and dizziness probably come from sacrificing my balance nerve but nobody knows about the pressure. I KNOW I will feel pressure on the back of my head and here comes the nausea and dizziness. At those times I feel very stressed and don't feel like doing anything.
I'm sorry I meant I feel about like I did before surgery as far as symptoms. Before surgery I had lost most of my hearing on my an side and now I have lost the rest of it. I really didn't think there would be much difference because I was almost deaf in that ear but I guess that little bit that was left mattered because it seems to get on my nerves a little more now especially in crowds.
I was nauseous and dizzy before surgery and I still get that way. I have to admit I haven't really challenged my vestibular system.1. I didn't realize how important it was( Deb's use it or lose it post helped)2. my neck and back hurt from a previous injury so walking very much makes my back hurt. I have started vestibular therapy and am trying to do the exercises. This week I had a cold? and couldn't go to therapy. I didn't really feel like it and when I called and they heard me she said they didn't want me to come.I have really improved since surgery I just feel I have been stuck here for awhile. I have A LOT to be thankful for and I am. I almost feel guilty for wanting more at times but then I know God didn't bring me this far to leave me like this!
This AN journey has been my first experience with cyber friends and I am so thakful you guys are out there. My family is great and they try but they just do not always understand and I am so grateful for you guys.
Thanks for letting me go on and on... it helps,
Take care,
lynn

[Raydean]

I think it's important to remember and to know "that we all did the best we could with the information we had at the time."

It'd be pretty easy for Chet and I to get lost in the "if only"  but I know  deep in my heart that we made the best decisions at that time with the information we had at the time.  No looking back.
Hugs to all
Raydean and Chet

[Battyp]

I agree,....looking back the only thing I'd have done differently if I'd have insisted on going to a rehab facility when I left the hospital instead of relying on my mom and son.  We just didn't know it would take two months for me to be able to get my eyes focused and start becoming more independent.  I had no post surgical expectations...I didn't have time to think that far in advance and no one to ask )

[Jim Scott]

Like many AN patients, I really didn't see any viable option to having the tumor removed.  At 4.5cm, it was doing damage and had to come out.  I had about 4 weeks from diagnosis to surgery and made good use of the time by doing a lot of research and gettiing 'educated' as to what to expect, post-op.

I ignored my AN symptoms far too long...out of ignorance...and wish I hadn't.   Other than that common 'regret', I have no reservations about having the AN surgery and my recovery has been going very well. 

Jim

[Battyp]

Well Jim seeing how you are in that top 5% you better not have any regrets!  )  I see you took the fast track too.  Gee, we should have cornered that before Disney did  LOL   

thanks to all for sharing!

[Dave_S121]

Batty

I knew the risks going in and felt I had done my research.  20 months post surgery I wouldn't have done anything differently.

Dave

[Kathleen_Mc]

By the time my tumor was diagnosed I didn't have any options it was "hurry up and get on the table" so to speak. The one regret I have is that I didn't push for a second opinion after the first neurologist didn't find anything wrong, that was 4 years prior to diagnoses, and certainly if I had been told by my GP he had sent a memo diagnosing my syptoms as "psychosomatic" I would have asked for a second opinion right then but I wasn't told, I was only told he didn't find a neurological cause for my symptoms. I was young and didn't question my GP, I know better now.
Kathleen

[Battyp]

Oh I hate that "psychosomatic" line from doctors.  I had one tell me that about my son's condition which I didn't take and found the problem and send the doctor a letter with copies of the diagnosis...he's lucky I didn't tell me he was "psycho"  LOL