ANA Discussion Forum
General Category => AN Issues => Topic started by: MAlegant on October 04, 2008, 08:59:59 pm
-
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)
-
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
-
Yeah, at least I'm not bored. Every day is a surprise around here. ;D
-
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 ;D
-
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!
-
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....
-
I hear ya Marci - enough is enough!
-
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!!
-
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. :D
Wendy
-
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.
-
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
-
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!
-
Vent...vent...vent!!
-
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 :D
-
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
-
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
-
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
-
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.
-
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.
-
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
-
Hi Marci, what Neurontin for
-
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
-
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
-
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
-
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
-
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
-
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.
-
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
-
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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
-
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