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

[MAlegant]

I guess I was hoping for an upward trajectory, even a slow one.  Instead, some days the numbness and nerve pain are better than others.  Does this mean it's not getting better or is this just the way nerves recover?
Marci (hoping to at least plateau)

[lori67]

Marci,

Nerves seem to do whatever they darn well feel like doing, whenever they darn well feel like doing it.  I wouldn't be worried that you're not progressing.  Sometimes it just feels like it's 2 steps forward and one step back.

Doesn't that just add to the fun of it all?  You just never know what the day will be like! 

Lori

[MAlegant]

Yeah, at least I'm not bored. Every day is a surprise around here. 

[mimoore]

Hi Marci,
I too thought awesome the recovery is started. I realize it will be a slow up hill battle but some days I feel like I am at the bottom of the hill and it is all a tease. Some days I am on top of the moon and others I am discouraged all over again. I agree with Lori (Hi Lori thinking lots of you) that it it two steps forward and one step back. I was four months post op yesterday and took my photos (yuck) and am currently working on an update with photos (just need to look more into how to post it though photo bucket). I hope your tongue is still twiching and zapping, mine came and went - and when I think okay thats it it starts up again - those wierd and wonderful nerves.
Take care.
Michelle 

[cin605]

I had my surgery June 26...also misdiagnosed w/ meniers inner ear infections for 10 years.
Everyday i get some new sympyom the next day it gone & there is another to replace it....swelling in my tongue comes & goes as it pleases..so does tinnitus hearing pain in shoulder & back
nausia dizzieness.Its really taken on amind of its own.Some days i get up & i am good but it doesn't last.....PATIENCE they told me.I am trying to take it day by day.
I am going kind of nutty becouse i used to get up & go now my mind says go & my bodys says NO!

[MAlegant]

I've decided that this is some kind of test to see how much we can handle.  Seems we can take a lot more than we think we can.  I've studied hard and now would like to pass the course and get on with things....

[mimoore]

I hear ya Marci - enough is enough!

[windy]

I can relate to all of you.  Although I did not have surgery and opted for radiation, I am still experiencing symptoms, as well.  This week it was hearing loss and a burning type smell in my nose.  I went back on steroids for the third time and in spite of being on steriods, I feel pain in my teeth/gum area and twinges in my cheek.  I have headaches most every day with pressure in my forehead and temples and can't seem to find to find an upward progression in healing.  When I think I am turning the corner, the next day I find I am hit again.  I have hesitated to write on the board because I don't want to scare people off from radiation, but I have found comfort in knowing there are others who have experienced the unknown route of progression.  Don't get me wrong, I wish we all felt only a route of upward progession.  I feel isolated from others I know (who are void of brain tumors) because I know they are waiting for me to say that I am doing very well, when they ask.  I don't know if I should lie or tell them the truth or tell them something in between.  Sorry for the long comment, but just want to say I truly relate Marci!!   

[wendysig]

I know what you mean.  I've been doing pretty well myself even with my inciison leaking for almost two months, all of a sudden I am having more balance problems again, along with dizziness.  I thought I was just about  ready to give up my cane but now I'm not so sure.  I guess I'll see what today brings.  I'm leaving in a few minutes to take the girls to school -- being outside is the real test of how my balance  will be ion any given day. It never bothers me too much in the house. I feel like  I'm doing the balance cha-cha when I'm outside.

Wendy

[cin605]

I feel like i am on a carnival ride when i take a drive.You know the one that goes really fast foward than really fast backward around sharp curves up n down.

[MAlegant]

Wow, yes, that's exactly right.  On the surface I look fine, so people assume I am fine but really I'm not.  (I have the painful gums and teeth also.) And it doesn't seem to matter whether it's radiation or surgery.  Nerves are finicky and don't like to be messed with.  I am optimistic that eventually either it will all pass or I will get used to it, though it's hard to imagine quite yet.  Every so often it stops and for a couple of minutes I get relief.Tomorrow I have my 3-month follow-up and I will ask a ton of questions and maybe give in and take the medication I've been avoiding.  I also know what you mean about trying to keep it positive but if you can't vent here where can you vent?
Thanks, sorry you're in this mess too, but glad to have company,
Marci

[cin605]

Thanks!Yeh the doctors say well you look really good your hair is all growing in....to look at you you would never know you had brain surgery 3 months ago & inside my head feels like its wobbleing around,still holding walls now & then.Lift my hand to take a drink pain shoots down my LEFT shoulder...but hey i look fine!

[cin605]

Vent...vent...vent!!

[MAlegant]

I feel like i am on a carnival ride when i take a drive.You know the one that goes really fast forward than really fast backward around sharp curves up n down.

cin605-remind me NOT to drive behind you.  Or with you, for that matter.
M

[Kaybo]

Marci~
I had the horribly painful teeth/gums for a LONG time - & I am TOTALLY paralized - go figure that one out!!
It does get better...

K