12 weeks post op

[badkins]

HI
I had my  an removed 1/10/06.I  was in the  hospital for 3 weeks.The tumor  was originaly 18mm but when they went to remove it it  had grown  1 1/4 inch  into my cerebellum and starting to press on my facial nerve.  The doctors  left the portion of tumor on my face.  My recovery is slow and I am very frustrated. I have  no balance, hearing  is gone also. I am nauses mostly all day even when I am medicated. I need alittle incourgement  here and let me know how  much longer I am going to live like this.

[sunshine16]

hi badkins,

I had my surgery Nov. 15 of last year... I also stayed in the hospital for 3 weeks.

I understand why you feel a little discouraged.  Just hang in there!  You'll get better soon.  It takes time and a little effort to get better and stronger again.  I'm still recovering but I can say, physically strong now......  I can still remember for 3 months after surgery, It was tough recovery for me, very tough but now I'm feeling much better.  No more dizziness....... (well maybe in the morning, when I first get up.  But after a while it goes away)

So, just give it a couple more weeks...  and you'll feel the difference...  

[Raydean]

Hang in there!!  Things will get better.   So much of your body's energy is going into healing that the improvements you want  seem so far away.  It may help your body if you're able to walk in a safe place (halls are great because you can touch the sides to help regain your balance).  Walking will help you to regain your strength, and help to regain balance which will help with the nausea.   Please consider seeing a vestubular Rehap specialist.  They specialize in balance issues and will be able to work out a program designed for your specific needs.  

Regarding the hearing loss check with your doctor, there's some pretty amazing hearing systems out there such as the BAHA, and Bi Cros.  A good audiologist or ENT should be able to show you what's available.

Talk to your doctor about the problem areas so he/she can make the referrals needed.  Insist on a referral ( if your insurance requires it) Be your own avocate.

Know that you aren't alone, many of us on this site are willing to walk with you as you move forward on this journey.   You've all ready have come a great distance from the day you were first told of the tumor's existence.  Be proud of yourself for what you have all ready accomplished.  it took courage and strength to research, choose a treatment option, and assemble a medical team..
Stay the course, don't give up and Believe

Hugs to you
Raydean

 Ã‚ 

[shoegirl]

Badkins,

Hi, I read your post and wanted to wish you well.  I didn't go the surgery route so I can't give you advice on recovery.  But I wanted to ask that you give your body time to recover.  I am sure it is frustrating but you had brain surgery.  Give yourself the time you need,  the rest will fall into place as it should.  I have heard that the more you walk and work with the balance issue the more your brain will compensate?  And by all means - vent here! It always makes me feel better - you find lots of people who are willing to help, understand, and have great advice.

Hope you feel better soon!

Suzanne

[shoegirl]

Hi,

Forgot to ask, how will you have the remaining part of the tumor treated?  Second surgery or radiation?  Or can it just stay there?

Best Wishes Again!

[matti]

Badkins - This healing process takes time. Your body is working overtime to repair the trauma that you underwent during surgery. And a major surgery at that! I agree with Raydean, I would also ask to see a vestibular rebabilitationist.

I know it is frustrating for you, and please know that you have a ton of support here anytime you need it. Most importantly, stay positive!

Take care and sending you a hug!

matti

[Battyp]

Badkins....for encouragement you've come to the right place.  I remember all too well how I felt at about the same time.  I felt stagnant and like I had made a huge mistake.  The people here are such an inspiration and a connectiont that is very cherished! 

Are you doing vestibular therapy?
Are you doing cognitive therapy?

You'll hear it so many times you'll want to scream but...It takes time.  We are here to give you whatever emotional support you need, provide entertainment (read the good morning post) answer any and all questions.  Heck, Ppearl will even dance on the table top if we let her 

hang in there brighter days are coming!

[FlyersFan68]

I remember feeling sick in my stomach after surgery and I think I took a medicine called Protonix for a while. Maybe you can ask your doctor. I made sure that I rested often after surgery but I also made it a point to do my eye excercises for example staring at an object on the wall and moving my head side to side without taking my eyes off the target. I took walks in the evening and used the darkness to challenge myself physically. I also got back on the treadmill after the initial resting phase. I hate excercing but I feel great after a good workout. I took breaks from the computer because that could make anyone feel sick after a while. Don't forget the small things like drinking plenty of water and taking in some sun. Take Care!

[badkins]

I want to say thanks for all the support. To answer a few questions. I have been in vesticlar therapy
since I came home.  11days I was in a rehab unit at the hospital. PT came to my house 3x a week and now I am on a outpatant  rehab.On  4/7 I have another MRI to see if the tumor has grown or is dying.Everyday is like groundhog day. Its hard to be happy in the morning when you know it is going to be just like the day before and sometimes even worse.

Beth

[Battyp]

beth keep the faith it does get better.  I remember feeling the same way at about the same time.  I spent most of November and December crying thinking is this as good as it's going to get.  It's gotten better for me it's just a very slow process and I'm not used to having to slow down.  Focus on the things you can do and don't worry about the things you can't.  I remember not being able to get socks etc..out of the dryer (back in November/December)  my parents bought me one of the gizmo's to help me.  I was weeding in the yard today (still having some trouble but not falling over) and haven't had to use the gizmo in a long while for laundry retrival.  It does get better!!

[Kathleen_Mc]

Beth: It is hard to tell you when you will feel better, everyone is different. I think you should focus on small improvements and not the big picture. I hope you are able to get outdoors for a short walk daily and continue to do the exercises recommended by PT, I know they seem simple but they do work. I cannot recall at what point the vertigo became less of an isuue for me the first time around and the second time around it took about 14 weeks for it to deminish to the level it was pre-operatively (I have never been completely rid of it since my inital surgery 15 years ago and the doctor's were surprised that my recent surgery for the regrowth caused it to increase again).
Kathleen

[Battyp]

Also,  I was told by my sister in law (who's an nurse guru) to keep a journal so that I could look back and see how far I came plus people you don't see every day notice and that would help me realize yeah, I am doing slightly better than I was 3 weeks ago.  Even though at the time I didn't notice or didn't feel like it.  Having someone's opinion that wasn't around me daily helped me to realize my improvement. 

[ppearl214]

Hi Beth and welcome to our little corner of the world!

I have to agree with everyone here. Remember, you have had extensive major surgery. I know that it gets tiresome to hear "give it time" but I have to say that time does heal all wounds (physical, emotional, etc).  I can share like everyone else here... to hang in there. Just know that during this time of healing, you have all of us nuts out here to help you along... we send hugs, we send giggles, we certainly do understand where you are "at" and we're here if you need us.

Continued speedy recovery to you!
Phyllis

[Captain Deb]

He Beth
Well you certainly are in good company here, hope us wenches don't corrupt you too bad.
The worse part of my recovery from surg was trying to stay busy and get my mind off of all this overwhelming stuff.  I took up knitting and started embroidering all the denim stuff in my closet.  Well needless to say I started to look like I'd spent a few too many years on the old commune after a while.  And I actually had to start selling some of the scarves, because I had way too many.  Going to the yarn store was my PT.

 I also began to read some of the things I had always wanted to read, which was really hard but reading is like a little jungle gym for the concentration.  I'd read the same page for 20 minutes sometime!

Keeping in touch with AN friends on a regular basis is good for the spirit--esp since you have found us wenches!

Take Care,
Captain Deb

[Larry]

Beth,

agree with all above. I am fairly fortunate in that whilst I have re-growth and headaches, everything else is not too bad - within acvceptable parameters i guess you vould say. Part of your rehab has to be humour. Whilst very difficult and at times, I struggle to convince myself to laugh, when i do, it really helps.

However, watch out for some of the wacky wenches on this message board, they are a corrupting lot especially the two headed, one eared Capt Deb who spends 20 minutes reading one page coz its not in parrot.

hang in there and force a laugh

Laz