Worried, scared and need advice...

For those of you that have been following my threads you know I am recovering from a VNS done 10/19/06. I am now 10 weeks post and I am still having a very hard time with my recovery... I don't know if I need to give it more time of if there is something wrong... or if I just made a big mistake by doing it all together. I have called my dr's office and of course spoke with the nurse and she is going to talk to the dr and call me back, in between time I am looking for any advice, infor or just support if anyone can help me.

To any of you that have had a VNS done or know someone that has.... was your recovery this long? and as tough? what I mean is, I can't do normal activity for more than 4 hours... after that I am dizzy/off balance feeling and I just plain feel like crap. I started back to work part-time, 1/2 days 3 days a week... a whopping 12 hours... and I can barely do that... i'm 2 1/2 months post from this surgery!!! Do I just need to give it more time?? or could there be something wrong? I can't imagine what... they went in and cut my nerve, what could go wrong?? I am still taking valium but I did just decrease my dose down to 2.5 mg 3 x's a day, I am considering doing the 5mg 3 x a day on the days that I work thinking it might help me get thru work a little easier but then again I want to try to get off of the valium because I have been told that it sedates the inner ear which will slow down my recovery process... so what do you do?

I am just SO frustrated and am looking for any advice anybody can offer.. I know it's a hard surgery, they told me that before I had it done but they made it sound like after 6 to 8 weeks.. 8 weeks being on the long end of it that I would be feeling better and should be pretty much back to normal... and now I'm hearing that it can take several months before you feel better... that's where I need some re-assurance from anyone that has had this done. I don't think I would of gone thru with this had I known that after 2 1/2 months I would still be feeling this bad and would be struggling as much as I am, I can't do more than a few hours worth of being up and moving around and I have to lie down.

Any information would be greatly appreciated. Thanks and I hope everyone had a great christmas.

Gina

 

Hi Gina-

I haven't had the surgery- as my neurotologist said it wasn't an option at all with my being bilateral....but my allergist actually put me in contact with a very nice lady that lives here close to me that did have the VNS- and she said it gave her- her life back. I do distinctly remember her saying that she went through living hell for over 6 months after the surgery though and said the recovery was rough- but that she would do it all over again.
I know that isn't much help- as I have not went through it myself... but I know she is more than overjoyed by the success she has had from it.

Hang in there- and don't stress too much (easier said than done, I know)- but stress in itself will also affect your recovery as it is hell on the body.

Best wishes,
Di

 

A woman at work had this procedure years ago in Boston. She said it was horrible, long time to get back on her feet but shes vertigo free today!!! So, hang in there Gina. Not sure what to say about the valium, i know this woman never took any of those meds they offered her. She now takes Zoloft which helps with her anxiety of it all. Feel better soon, i think you will, it's just going to be a long road to recovery...or maybe not! You are doing right by trying to figure it out though by asking the questions here, KNOWLEDGE IS POWER!

 

((((Gina)))) I'm so sorry that you are having such a difficult time. I hope that you feel better soon.
SherryC

 

Hi Gina

I can't comment on your surgery as I haven't had it but I do hope you feel better very soon.

Linda

 

Gina,

I hope you feel better soon!!!

Maggie

 

Gina I feel so bad for you, I haven't had the surgery nor will I be, I'm bilateral but I'm really hoping that you'll soon see a turn for the better. I really admire you, you have to be one tough cookie to be battling this and trying to go to work too.
((((((( HUGS ))))))) Loretta

 

Gina:

I wish I could help. Please don't try to compare yourself to others; we are all different. If visiting the doctor would put your mind to rest, then by all means go and se him. In the meantime, please be patient.

You might want to consider keeping a diary; that may help you better see your progress, even if it is not quite as quick as you would like.

 

Gina, This might be a little off subject but its all I have to add. I was reading today about people that have strokes and the doctors have them do repeative actions with their limbs. It says those people no longer have the brain connection for them to move thier limbs. But making them do the motion it makes new pathways and they eventually can move again. They put the person in a hanging sling and have someone move or help them move thier arms or legs that are affected. It takes them a long time. Maybe its same way for you. I hope you feel better soon.

Linda M

 

Did your doc ever call back?
I see my ent @ 8 in the morning and I plan to bombard him with questions about any other options for myself but I will try to get his opinion on VNS recovery, that is if I am not rushed in and out.
I forget everything when I go to appointments.

 

Gina
I would like to first say that you are a fighter and that in it self is going to tire you out. Second the recovery is different for everybody, I am out 26 months and my eyes and balance isn't what I would like it to be but I can't change it so I live with it. You being tired after 4 hours is normal, I get tired after 4 hours and by the end of the day all I want is piece and quiet and a few kind words. I have no vertigo and haven't missed a day of work because of a MM attack, but I still have sore ears and bad hearing. Think of it this way, if it was a ear infection you would be tired a lot also and the best thing you could do is rest. I don't like where I ended up in the healing process but I am alive and fighting like you.
Blessed as usual
Dennis

 

Hi Gina

I've heard that even after gentamicin treatments it may take months to feel normal again. So the recovery process can take some time.

About the valium. You will read in many places on the internet that vestibular suppressants delay compensation. My ENT has also advised me of this. Basically - once you have a VNS - the brain must compensate - it compensates by receiving dizzy signals - for example by making yourself dizzy - although horrible, gets the brain to realise there's a problem. Vestibular meds DAMPEN and sedate these signals so the brain does not "get it". What's your ENT's opinion on this?

Hang in there!

Mari

 

Gina!

Hang in in there girl! I know it is frustrating, especially after being at work a few times, Remember you had brain surgery, will write more later, busy day today,

In my thoughts
Danny

 

I am trying to hang in there, and I know it takes time... I just am freaking out because I don't feel much better than I did 2 weeks ago so I worry that I'm not recovering... but I'm sure it will, I just have to be patient..and that's something I'm having a hard time with. The thing with the valium is just something I'm going to have to work with, the nurse from my doctor's office is suppose to call me back but she thinks that it would be ok to use the 5mg on the days that I am working as I am only working part time, or use it when i need it (bad days,etc) and then try to use just the 2.5mg on the days i'm off or feel ok.. so that is what I think i'm going to do for now. I got up this morning and although I haven't been up long enough to be sure how i'm going to do today.. i only took 2.5mg... i work this afternoon 1 to 5pm so I will take a 5mg right before i go to work and then see how i do today.

Mari ~ I've had 3 gent injections and actually I did pretty good with them, I was dizzy for about a week and then it passed and I got about a year of relief with 2 of the 3 injections the 3rd only got me 4 months and I saw my ENT again and after all the fun testing again he suggested the VNS and it was something I was really trying to stay away from but the gent wasn't working any more and my ENT thought I had some scar tissue covering the nerve from 2 previous fistula surgeries so we did the VNS.. he did tell me that there was alot of scar tissue and he had some cleaning up to do along with cutting the nerve so maybe that is why i'm having such a hard time... i don't know but the gent wouldn't of worked again for me. thank you for the info though!

Iowa ~ I know your 2 years post and still have some issues but it sounds like you've pretty much got your life back though right? I remember reading a post where you had rode your motorcyle quite a distance and traveled across country in a motor home....?? so... if I can get to that point i would be thrilled. Do you remember how long it took for you to feel actually "recovered"? just wondering.

Tuck ~ thanks for the support, you're always there even when you are down and out... I just need to hear those encouraging words to get me thru each day.

Gina

 

Gina...I agree 100% with Mari here.
This is just my opinion and you can do with it what you want...but, I kind of think you are rushing things with going back to work before you are actually better. I would suggest you stay home and get yourself OFF the valium, rather then taking more valium to get through a work day and come home exhausted and frustrated. It sounds to me like you are fighting an endless battle here and not getting anymore progress because you are not letting yourself heal properly. I know that sounds harsh, and for that I am sorry, but you sound so frustrated, and taking more valium after the VNS recovery and progress you've made so far...I'm just surprised that that nurse said its ok to do that. I would talk personally with your doctor or even your VR therapist and see what they say.
The whole idea SHOULD be to get you off the valium and allow your brain to work and learn new things...drug free....if that makes sense.
I know how hard it is, just getting off the drugs is hard enough, (been there) its not easy, but its something you really need to do in order to let the VNS do its job.

Good Luck...you can do it!!
HUGSSSSSSSS!!
Bergie

 

Bergie that makes me really think... good point and I never thought about it that way... the problem is that I need to get back to work and I feel that I should be ready after 2 1/2 months... so you are right, I am frustrated and I probably am pushing myself too much but I don't know how else to do it... I've been on the couch for over 6 weeks and I can't take it anymore... so at 8 weeks i went back to work, part time... what the nurse suggested was exactly that... take the 5mg on the days that you need it, work.. bad day, etc.. but when I do then I'm slowing my recovery so I feel like I don't know what to do. Your comment is something I will definitely talk to my doctor about and thank you for the info, it makes sense... but I just cant take anymore time off of work.. i've been off a long time already so I guess it's a combination of pushing myself, worrying about work (which induces stress) and then going back and forth with the dosage of valium.

I just hope that I get better soon... lots of ppl commented that after their VNS it took up to 6 months or longer so I know I need to give it more time.

thank you
Gina

 

Gina
I ride a 3 wheel motocycle so I can't fall over, I did pull a camper 1500 miles last summer but it wasn't a piece of cake. My wife said she would drive if I felt bad but a 10000 lb camper with a long box pickup is about the same length as a semi so I doubt my stress level would have gone down. (smile) 8 to 10 months after my VNS I still felt crummy and some days worse. I remember going down the road on the trike and feeling like I was falling off it because my eyes were telling my brain the crown in the road was level so I needed to lean, weard feeling. I deal with each day on its own, some days its my eyes that don't focus right, some days my balance is off, other days I just need to slow down and smell the roses. I still have to limit my time in walmart and menards, something about the lighting and the vast area that makes me feel weard. I wish you a speedy recovery, you did say you were a hard headed german didn't you??? Well I am.
Blessed as usual
Dennis

 

Hello Gina,

It does sound like you are a very strong person who has delt with so much. I appricate your courage, strength and endurence through all of your challenges. My thoughts are with you. I do hope you feel better with much relief from your surgery soon.

stay with it,

Denise

 

Hi Gina, I am sending major good wishes to you. When I had a colectomy about 14 years ago, my aunt who is a nurse told me, no matter what they tell you, it will take a long time to feel normal again. Many patients it takes up to a year after major surgery. I am SO glad she said that because just when I was expecting to feel "me" and did not, I thought of what she said. Sure enough, the year mark had me at major recovery and feeling great. Our bodies go through a lot. Best of luck to you, Lisa

 

Gina ~ Sorry I haven't been here sooner for you !!! What can I do to help you? What do you need, other than getting back to work and moving forward? Is there something missing now that you need to do to help yourself with that you haven't thought of before ?

I am asking you these questions because I feel helpless and when you feel helpless I feel helpless thru you (((hugs))), so if you don't mind I am going to be positive for you when you can't be, in the hopes that this message will help you in some small way but in a big way as well

Sparrow who is always thinking about you and remember that the light shines in the darkness, just look for it !!!