Post Op issues, do they ever go away?????????????????

[Patti UT]

Just curious if anyone out there is post op more than 3-5 years. If so please give me some hope that all these post op issues do improve over time. After almost 2 yrs since surgery, I do feel there is slight improvement, but just can't get feeling like I'm ever gonna feel myself again. Mainly balance and the feeling that my head is full of water & the headaches which makes me feel lethargic. I never knew a person could feel so many different kinds of headaches. And why are they called "headaches"? The proper description is "HEADPAIN" There is nothing achy about them, they are just plain painful. This nightmare just goes on and on. Feels like a bad cold bug that you just can't "shake". You think your getting a little better, but you just can't ever "shake" it completely. I get so very tired of feeling this way. I can't even enjoy a nice glass of wine of two to relax and unwind anymore since I already feel like I've had a few, and walk that way too!  Sometimes when I'm feeling especially strange I think other people are looking at me weird, like they can tell I'm a little off. ya know what I mean. If only "they" knew the little nightmare going on side.
Patti UT

[Captain Deb]

For me my post-op issues haven't gone away, but they have changed.  You just have to figure out which ones you have power over and which ones you don't!  I've been seeing a headache specialist for about a month and for the first time I feel a little hope.  Quit dealing with the neurosurgeons for the headaches--they all want to know "why."  The new doc I'm going to, who is a headache specialist at a headache clinic,  doesn't really care about the "why" as much as he does about the "what can we do about them."  The balance thing is just plain work and time--no way around that one.  I was down and out for about 3 weeks with arm surgery and noticed I had "lost " alot of my balance function just from being a couch potato.  The hearing loss and wonkyhead are permanent for me, no way around that and I pray for acceptance everyday for that one. (Wonkyhead being a strange, disconnected, semi-dizzy, achey, floaty feeling that varies in intensity with how fast I'm runnin' around the grocery store lookin' fer stuff!)
Acceptance is a toughie--a counselor may help. This forum is a help, too. A great majority of the folks here are "posties with issues" as opposed to folks who get an AN, have treatment, then go about their merry way! I really enjoy the success stories who still hang around.
Don't EVER let anyone tell you that these issues are "all in your head"(actually they ARE in your head!) or you are just imagining things. We know different. Also download some stuff about post-op cognitive issues and emotional problems--(I changed computers and have lost a few of my favorites so I can't send you the links--will later) and encourage your family members to read them.

Capt Deb

[Patti UT]

Deb,

  Your description of "Wonkyhead" made me laugh, since it describes me to the tee. Thanks for the input. So maybe 10 yrs from now we will be more back to normal???  I really feel for people who have had these on both sides. I wonder if they loose the vestibular nerve on both sides, how would you balance with both nerves gone???
Patti UT

[Raydean]

Hi Patti

This fall I'll be at the nine year mark.  The balance issues will get better, but it's something that you really have to work at.  I'm doing things now that 5 years ago wasn't possible.

Regarding other issues post op. One of the things that helped me the most was having a series of post op evaluations.  (no one doctor could answer all my questions)  Due to the evaluations it helped me to focus on what i could improve and to let go of the things that I had hoped would improve. Letting go, when we want so badly to regain is a hard step to take, but a necessary one.  This (the way life is now) is my new normal. It's "just life".

Patti, as with all major losses there are steps that need to be worked thru.  Acknowledge the loses, allow yourself to be angry, and to grieve over the things that you have loss.  Working thru each stage is one step closer to acceptance.  It's hard to balance the person we were before (and the things that we were able to do) with who we are now and the things we may, or may not be able to do.

Sometimes due to post op issues we tend to think of ourselves as "less then'.  Less then the person you were before the AN diagnoses, less then your friends or co-workers.  The truth is you are "more then."  You are stronger in spirit, in knowledge, compassion and many other areas.  I know the struggles that you have been facing due to a 4 cm tumor.  They're probably some of the same issues that i have faced.  I've do doubt that in a few more years you'll look back and be able to see the incrediable journey you've been on and how far you've come.

Thinking of you
Chet and Raydean

[Obita]

Patti:

Someone posted this link not too long ago: http://www.theblackriver.net/wobbler/wobblercognitive.html

It was quite the eye opening website.  It explains why we feel the way we do and why we do things different after AN treatment. 

I am only two years post op but I am happy with my recovery.  I couldn't even type or remember how to spell very well after surgery.

Best of luck to you - hoping for better days ahead,  Kathy

[Captain Deb]

Kathy--that paper was exactly the one I MADE Dr. Love read--made a huge difference in his tolerance of my sometimes weird behavior and "upseted-ness." All that crap combined with Menopause--yeah a walking time-bomb. Good thing I have an inner pirate to let out when I feel like rippin' someones head off!  OK for pirates to rip heads off--not OK for cute little 55 year old Grandmas!
Capt Deb

[Obita]

Thank you Capt -

I was too lazy to go back and find the thread.  I have that page on my favorites and always will.  Many, many thanks for your posting it.  It explains SO much.  Some of that stuff is really hard to explain to a non ANer - it is a wealth of information at our fingertips.

So glad Dr. Love understands now.  After all, he signed up for "in sickness, AN, Menopause and in health till death do us part amen".

Cheers,  Kathy

ps:  I mean thanks to whomever posted it -

[Janet]

Patti,

I found myself in a similar post-op situation. The headaches are what prevented me from getting my old life back. After one year of waiting for them to resolve on their own, I finally decided that I needed to be aggressive in finding out what could be done.

Captain Deb is right on. Get yourself to a headache neurologist. Surgeons don't have the time to treat these headaches because they are not a quick fix. You really want someone who is current and experienced with headache treatment. People without ANs can have these type of headaches too.

I have been getting Botox treatment in my head, neck and shoulders every 3 months from a headache neurologist. I think I am one of the only or few people on the forum that uses this treatment. I just got my 3rd treatment today. It has really relieved me from the constant nagging of dull aches, neck tension, and migraines. I am sold on this treatment, as I feel more like my old self. I take Indomethacin for the sharp stabbing pain in the back of my head brought on by certain physical movements. (This is the only pain the Botox doesn't take away completely but it helps to quiet it).  When I take the Indomethacin, I don't get the sharp pain. If I stop taking it, it comes back within 12 hours.

So...I went from desperate to........ very satisfied (not cured). It took trial and error, time and persistance. I noticed that people on this site do get relief in various ways. There doesn't seem to be a formula that works for everyone. What seems to be the constant is that those going to a headache neurologist or pain clinic seem to be getting better results.

If it wasn't for people on this site, I might have thought I was crazy and the only post op AN patient with severe headaches. Thanks for being there everyone!


Best wishes,
Janet

[Patti UT]

Obita & Captain Deb,   thanks so much for the link to the paper about cognitive problems and the vestibulat patient. it was very informative, really explains a lot.  Going to send a copy to certain people who think because I look Ok on the outside, I am Ok (mom-in-law,  YUK!!)  Also helps me put a few things into perspective

Raydean,  Thanks for your words of wisdom,  after reading the paper, mayybe it's time for me to start trying to accept the new me and quite fighting it expecting it to go away. Very hard for me to do. I don't give in/up easily. Also like most females, don;t take time out for myself, everyone else comes first. Havn't even begun to consider any kind of greiving for the function & lifestyle losses that came with this thing.

Thanks to all on this forum for all the great info.

Patti UT

[Kathleen_Mc]

Patti UT: I don't think to have the goal of getting back to "who you were" pre-op is a realitstic one, I think moreso one should focus on being the best "new me" and in time acceptance will allow you to be that. There are things that can and will change in the following years but I don't think you will ever be the same again. It's been 16 years for me and I've been through the gammit, I have come a long way yet some things I have had to acept are "as good as it gets" and hey.....that's ok!
I wish you peace within yourself and the best physical recovery you can achieve.
Kathleen

[Patti UT]

Thanks kathleen,
    Even though I did lots of research and did look at some patient posting sites such as this one, I still didn't realize some of these thigns are permanent.  Too bad the Doc's don't prepare you for that.  Why is it that the Doc's try to present all the post op problems as things that will be short lived. My ENT surgeon told me the balance would be back to normal at 6 wk post op. What kind of drugs is he on?  At 6 mo, he changed his story to "it takes a year, by then you'll be back to normal. By the time I saw him at 18 mo and underwent the series of balance tests, he indicated that this may be as good as it's gonna get, and said "good luck with it" as he left the room.  I think if they prepared you better, the acceptance might be a little easier.
Patti UT

[Peanut]

At last I hear some words so familiiar because I've been thinking them.  For example, Patti, I have the same experience in that others remark on how well I look and cannot imagine why I am not functioning as before.  It's largely the head pain scourge.  Cap'n Deb, I am amazed at the amount of time you must spend at the computer every day to contribute all those posts.  I have found all the comments in this thread helpful, they help me to feel not so alone in this.  For me, follow up after surgery has been a trial.  In my experience the surgeons certainly are not interested , and local healthcare professionals do not ususally have much familiarity with ANs and their possible aftermath.  I'm over three years from surgery and definitely still improving, but not in a linear way.
Just in the last few days, since a hike, my neck on the surgery side is tight and hurts to turn my head.  Scar tissue there. So perhaps there is worse scarring inside which leads to the head pain?  Like an inner ear ache, AN side?
And stamina is better, but not like before.  Feel I've been catapulted into the Silver Age before my time! the dyslexia comments interesting too.
So thanks to Kathleen,Patti,Captn Deb, Janet, Chet and Raydean, all of you.  Yes, "they" rarely can imagine the nightmare going on inside, how right you are.

Peanut

[Kathleen_Mc]

Patty UT: I think doctor's don't fully prepare patient's for the aftermath of AN surgery properely because 1. there is no way to know exactly what may come of the surgery in terms of long terms changes 2. fear of litigation if things don't go exactly as they say 3. everyone is individual and things may or may not happen 4. it is hard to put into words an experience one has not felt for yourself 5. many of the problems we continue to deal with are "new" (relatively) in the medical profession as not that long ago many people did not survive AN to have to deal with the after math so all these things aren't in a "text book".
I would be happy if I heard that people were prepared to loose thier hearing, balance, facial functioning to some degree and may suffer depression for a period of time post-operatively and that the doctor DIDN'T KNOW HOW LONG it would take for these things to improve after the surgery (yes a doctor say I don't know!)
Kathleen

[Jim Scott]

I'm one of those AN patients Captain Deb referred to: "who get an AN, have treatment, then go about their merry way!"

Over 2 months since my surgery and, so far, so good.  My balance has returned to about 90% of normal and I have few other post-op problems.  We'll see what the fractionalized radiation treatments (beginning in September) bring.  No serious or long-term negative side-effects, I pray.   

I stick around this board because I'm still in treatment and I also want to pass along whatever advice and/or encouragement to so-called 'newbies' (people newly-dignosed with an Acoustic Neuroma) and use my personal 'success story' to show that an AN diagnosis isn't automatically all gloom-and-doom, as it were, although it is a serious and complicated medical challenge.

I sometimes feel (almost) guilty when I read the post-op struggles of other, less fortunate AN patients with relatively serious problems some time, often years, following their AN surgery.  I also have empthy for those folks who have to deal with these ongoing handicaps - because it could just as well be me.  My post-op complications were few, mild and rapidly disappeared or became so mild that they didn't (don't)  intrude on my daily life.  I am truly blessed -  and I know it. 

That is why I try to 'give back' what I can to this site and this particular forum.  While I won't be posting here indefinitely, I do appreciate all the couragous members on this messageboard and the good wishes and helpful advice I've received.  This is why I was, like many, distressed over the recent 'unpleasantness' and am pleased that it seems to have evaporated.  Good.  We're all better off without that kind of bickering and finger-pointing on a Support Group forum.  Now, lets continue to help, advise and even kid each other, as usual.   
 

[Patti UT]

Jim,
   SO happy to hear a success story. DO NOT feel guilty, please please please share your good experience of a quicker and fuller recovery than many who post here. As you said. The newly diagnosed, although they need to know what they may be up against so they can be mentally prepared,  also need to go in with a positive outlook that this thing can go pretty smoothly for some.
Keep posting your great recovery story, as we need the "balance" on the forum
Patti UT