why do my post-op side effects come and go?

[LADavid]

Marci
Great question that I wish the doctors would answer.  I'm 10 months now and there are days when I am worse off than when I was immediately post-op in the hospital.  I do all the stuff that I am supposed to do but I seem to be losing ground.  I guess it's the long haul that has me confused.  What I am really wondering now is how many AN patients go through what we are going through and why isn't there more information on the recovery process.  It seems like after two months post, you're pretty much on your own in a blackhole of information.
David

[Kaybo]

David~
If you ever find out...let me know!  For me, it is just the new norm!  I can (with the help of Dave & my mom) say that it is almost ALWAYS related to fatigue...heck, when I was working (teaching), my principal here (so about 4-5 years out) told me after the 1st year (or maybe it was toward the end of the 2nd) that she always knew the day of the week by the droopiness of my eye and my speech!!
I like to think that it is better now but in reality, I think it is just b/c I am not working full-time - except being mother and now caretaker...

K

[cin605]

I get the same.no post op info what so ever except from here,No doctor will give me any time frames or what would happen after surgery or even a slight hint that i would be more off
balance than i was pre-op.When they do tell me anything its exactly that they TELL me nothing ever written so i can read it later.

[jazzfunkanne]

Hi all i felt good a year post op, now i am two years post op i feel i have went two steps back, i hope things get better in time.

[MAlegant]

No good answers for this one.  I guess the nerves do their own thing on their own timeline and some things will be permanent.  I will try to concentrate on the good stuff (repeat 100 times) but I did get a prescription for Neurontin today.  I asked for the lowest dose possible (I am a total lightweight when it comes to drugs and alcohol).  I just hope it helps with a minimum of side effects. It doesn't seem fair that the drug for side-effects has side-effects.  Choose your poison I guess.
Marci

[jazzfunkanne]

Hi Marci, what Neurontin for

[MAlegant]

Neurontin is for nerve pain or neuropathy but is also an anti-epilepsy drug.  I hear it has nasty side-effects but the pain is driving me batty so I'm willing to give it a try.
Marci

[yardtick]

Good for you Marci, I didn't have a Dr at the time I had my first surgery who understood neuropathic pain or facial neuroma.  I was told there was no reason for me to have pain.  I went a year with pain, than it took many trials of different drugs before Neurontin was the one.  I also take Toradol and sometimes Tylenol 3.  I don't like the weight gain, but I guess there are worse things. 

Take care SS,
Anne Marie

[MAlegant]

Hi Anne Marie,
Yes, not looking forward to weight gain, I'm a size 6.  But I'd rather be a plus size with no pain!  He put me on the lowest dose possible.  How much are you on?
SS-M

[yardtick]

I take 300mg X 3 and the first thing the pharmacist said to me is this medication causes weight gain.  Oh joy oh bliss!!!!  It happen really quickly, 20lbs even though I have been SO careful.  When I weaned myself off and the pain came back 10 fold, but I lost 7lbs in three weeks.  I had to go back on and the weight came right back  

Not to discourage you but it can effect your night life.  I wasn't told about that, but I did bring it up with my GP and the specialist, they both laughed, nodded and told me not to worry it will get better and it did  

So be warned my SS

Anne Marie

[MAlegant]

Anne Marie,
The neurontin makes me feel ill.  Does it take a while to work?  Another words, do I have to put up with a few weeks of feeling ill before it relieves the pain?  So far, the pain is the same.
Thanks,
M

[Omaschwannoma]

Marci, sorry you are in pain and that meds aren't "kicking in".  Hope you find more relief, now I feel pretty crappy "PMing" you with my question...sigh!

David, keep in mind these VS's are "rare" so not much is known in all areas, how they get there, why they grow, treatment outcomes with both forms, and recovery times.  The doctors still learn from us, in a way, we lead their way and someday/year there will be a nice neat little box VS's will fit into.  Thankfully the surgery has improved and also looks like the radiation tx has changed in strengths zapped at the head. 

This is the most frustrating part of these tumors--the unknown.  We are individuals and as you know the progress of how we heal is unique to each of us.  Get on the surfboard and ride this wave as best you can without falling off.  You're doing a good job of it so far, don't become overwhelmed by the enormity of it all. 

To you both, even if I don't share the same problems you are going through, I know how frustrating it can be when we have "no guide" to let us know we are on track.  Use your frustration as a tool, turn this feeling inside out and maybe you will see it more clearly.  If it is not possible to accept then how best to continue to search other alternatives/doctors for help. 

I had a long road of total frustration with no definitive guide as to what being "off balance/wonky head" is supposed to feel like, being told each of us heal faster than others, be patient.  Thanks to my problems, now I'm sure my doctor will tell patients if they discover after vestib therapy their world still "bounces" to get in touch with him as oscillopsia is not a part of feeling "off balance" as doctors tend to use this description with their patients during their recovery.  More detail needs to be forthcoming here, and even though because of the three-years of oscillopsia and inflammation spreading my brain did not fully re-train itself and I yam what I yam!  What has come of this is more doctors now know what to "hear" from their patients complaints of "off balance" and how best to treat this.  As stated before, we lead their way to better improvements. 

[MAlegant]

Hey Karen,
No problem on the PM.  My pain is not constant, usually gathers steam during the day and beats me up at night.  I KNOW it will get better.
M

[Captain Deb]

Marci,
I've been on Neurontin for 2 years and it really does help with nerve pain but it takes a long time to kick in. Also the side effects of feeling ill and fatigued do go away with time as your body adjusts to the drug, so try to stick with it. It sure beats being on painkillers or NSAIDS and running the risks of stomach problems or rebound pain. If the side effects are too hard to manage at first try slowly titrating up to the recommended dose--this will allow  your body to slowly adjust to it rather than shocking it.

Capt Deb

[MAlegant]

Capt. Deb,
Thanks for the advice--I will give the neurontin another try.  Interestingly, Xanax also helps the nerve pain but the doctors don't have an explanation for why. 
Marci