2.5months POST SURGERY..HELP

[Battyp]

I had my surgery aug 23rd at moffit cncer center in tampa.  Was told various things by various doctors had several consults, read the literature and find myself very frustrated.  I had a 2.54 cm tumor on my left side accoridng to the mri films but was told it was bigger once they got inside.  Everything I read said I should be back to work in 6 weeks and i'm to the point wondering if I'll even make it back in Jan as I planned.  I'm a teacher.  My balance is still off, my left ear is ringing and now the right too, and I def. have hearing loss, left eye doesn't tear and I have trouble managing normal household things like laundry, cleaning and cooking.  I'm also a single parent and financially am starting to panic.  I still can't sleep on the surgical side, my face, mouth, tongue is still numb (no idea if or when it might go away) still dribble without a straw...was told the pressure to my brain stem pre surgery was incredible and it was a wonder i was even alive so I'm trying to be thankful that I am but am beginning to wonder if this is as good as It's going to get and how to accept my fate.  any one have any encouragement?  The first month after surgery I had phot sensitive vision and spent my days in the dark, they thought I had a seizure post op but now are questioning that, had major problems with my blood pressure which I had not had previously (now down to two meds instead of 4) off the steriods which of course made me gain a bunch of weight..don't let the doctors tell you you shouldnt be hungry (post op I didn't sleep, mind raced and was hungry constantly), thanks for listening, Michelle

[wind6]

Michelle, Wow...sounds like you really have a plateful. Being a single parent, running your household alone, and the financial load on top of major surgery. I think you should just try to take care of you and if its at all possible go ahead and give yourself till after the holidays to return to work. My surgery was August 2nd and I am planning on going back to school in the spring. There is no way I could handle that right now. I also understand that "is this as good as it gets" feeling but, when I look back and compare a month ago to now, there is definate improvment. It is just so slow going. I tell myself that its no wonder I worry...I am CONSTANTLY reminded...everytime I try to blink...evertime I move quickly...everytime I try to walk in a darkend area... How do you get away from thinking about it? That alone gets very tiresome. I hope you will be kind to you and give yourself the comfort that we all need after this trauma. Remember that you "are" incredibly strong to be doing the balancing act that you already have without adding your work.
My thoughts and prayers will be with you, Sherry

[luv2teachsped]

Michelle:  I agree whole heartedly with wind6.  Be kind to yourself.  I had my surgery in May, took off all summer and started teaching this fall and I am still very tired, but I am getting stronger every day.  You can't push your body to heal, if you do, you may find yourself even more stressed, depressed and frustrated.(ummm sounds like I've been there..) and it will take even longer.  You'll do it.  Take one day at a time and thank God for every new day. Thinking of you!  :Pluv2teachsped

[Battyp]

thanks for the input.  I'm just real unsure what to expect since the doctors originally said I'd be able to go back to work in 3 to 6 weeks and I decided to take the semester off.  I just dont' see myself able to go back to my job in jan when I don't go back to the surgeon until dec and i am not even able to drive yet and they indicated I should be by the 1st of november.  I'm so sick of my teeth, lips and mouth being numb and still can't sleep on the incision side.  I guess there is still too many unknowns and variables and my son lost his dad to a brain tumor so things have been tense with mom having this and it's hard to reassure him when I don't know nor feel confident things will get better.

thanks for listening,
Michelle

[Jeanlea]

Michelle,

You have my best wishes for your recovery.  I also found it hard to believe that people could return to work after only 6 weeks.  I had my translab surgery for a 3.5 cm tumor on September 6.  I also am a teacher.  I returned to work for half days on October 31.  Today was my first whole day with no support from the sub teacher.  Luckily, I'm not too tired.  I read so many people's advice on here that said to rest while recovering so I listened.  At school I sit down when I'm tired, even while I'm teaching.  I teach 3rd graders and they are very helpful.  They even keep track and remind me to put in my eye drops every two hours. 

I still have some facial paralysis.  I'm just beginning to accept it as part of my "normal" for now.  Teaching and having to talk out of the side of one's mouth is strange at first, but everyone around me seems to have adapted well.

It took me a while to be able to sleep on the surgery side of my head, but I kind of forced myself to do it for short periods of time until I could do it longer.  It's almost normal now.

Take time to concentrate on healing yourself.  Other things can wait for awhile. 

Good luck.

Jean

[luv2teachsped]

Hi Again Michelle!
I bet things are hard on your son, all the more reason to take care of yourself!  Take heart, things do get better, but it takes a long time.  Somethings I'm not sure I ever will get used to. Like teachers(of all people) seem to some of the worse people when it comes to using a microphone.  I've just return from a 2 day conference on our MEAP and MIACCESS state assessments.  Although I marked hearing impaired on my reg. papers(help, I've forgotten how to spell it!), AND they did put a microphone in most of the rooms I had signed up for, all but one speaker said THEY didn't need it!  I am still not comfortable speaking up and advocating for myself.  I imagine over time we will. I am learning where best to place myself during meetings, at restraurants, church etc...Take Care Michelle, you too Jeanlea!Glad to hear things are going well! luv2teachsped

[David707]

Michelle,

I am sorry to learn you situation.  I don't know how to tell you at this moment.  I just want to let you know; your will be in our thoughts and prayers a lot.

I have been very grateful for the success of my surgery and the peace I had.  It, however, does not mean I am 100% back to what I was.  It was a given in my case of losing my left hearing and left balance nerve.  I am still have balance problem when I make a big upper body movement.  I also have difficulty to follow group discussion.  I just try be patient and hand it over to God.  I am very grateful for the peace I have had.  You don't have to be religeous.  But try to stay positive and be easy on yourself.  Things might be getting better if we can take it one by one. 

We will all be with you.  Best wish.

David(707)

[debora]

Michelle,

I am sorry, it's all we can all say,  I didn't have surgery but had radiation which changed my life totally.  I can understand what it means to go through this with such awful worry about the financial worry that  comes not only comes with paying for the procedure but also with having to take time off and not having money coming in.  I pray that you will have help from those who love you.  I went back to work right away and thought I was in the clear, then got so sick after 4 months.  Because of our financial situation I worked many hours, looking back I don't know how I did it and I also don't know how I kept my job.  I do know we are a lot tougher than we ever thought, you will make it through this and we are all here to listen, you are not alone.  God Bless you.  Deb

[cookiesecond]

Michelle,
I am  sorry things are so tough for you right now.Things will get better!!!The road to recovery is a slow one but don't give up.You are in our thoughts and prayers. Keep us posted and feel free to vent any time. We are here for you.
Lynn

[Battyp]

Thanks to everyone for the kind words.  I'm def. having a better week this week than last...still not where I want to be but it's nice to know I'm not alone!

Hugs and prayers to all,
Michelle

[Pembo]

Stay strong. I had a lot of your issues after surgery. At 17 mo post op I still can't blink but most of my face moves. I still use a straw because of numbness in my mouth, lips and face but the feeling is returning. I can now go without the straw but feel more confident with it.

Have you seen a physical therapist for balance exercises? The best one was standing close to a wall with one foot in front of the other (as if your on a balance beam) keep some space between your feet. Then try to balance without holding on. Try to hold it for as long as you can without touching the wall. You will notice that the more you practice the better it will get. Switch your feet and try it as well. 

The balance improves in time as well but I'm still not so good in the dark.

And you'll adjust to the hearing loss somewhat. But it's still very different. I just went for the Baha implant in Sept.

Read up on PTSD. Brain surgery qualifies! These boards have been a godsend for me too. It's nice to know you're not completely alone in all this and you're not crazy either.

The one thing I have learned thru all of this is It just takes time! I'm 37 with 3 small children and time is a premium but I have no choice. Get your rest, take it one day at a time, and seek out help.

Take care and stay strong. Email me if you'd  like!

[Battyp]

I was in the middle of typing you a note clicked on the wrong thing and lost it..darn!!

I have no idea what I was saying either..darn the short term memory loss!

Anyway, thanks for the input and kind words.  It is making it easier to get through this ordeal as my doctor is so far away and no one locally seems to know what do to.

Hugs, Michelle

[debora]

Michelle,  I am so glad to find that I am not the only one who has short term memory loss, I also know what I want to say but can't find the words, I just have to laugh at my self but am totally embarressed (sp?).....................

[David707]

Michelle,

Good to see you are not as panis as a few days ago.  I have been thinking how to be more helpful to ease your fear and frustration.  I guess the best I can do is to share some of my own experience with you.  However, I am very slow in writing (English is not my native language) and my computer is also slow.  So, I will just do a little each time.

First all, I also have the short memory problem, although my friends keep tell me it all has to do me getting older.  But, I think it is more than age.  It is quite often now that I my mind just went blank.  Don't remember colleague's name or forget the words in my favor songs.  It is also true that, after the surgery, I often type words in a worng order of letters.  I know this is a problem but, thanks God, it is not a big problem and had not brothered me too much.  I just let my colleagues know that I am differnt from what I was.  So far I have not heard any negative comment about my job.  I had to give a presentation yesterday in an annual meeting with a customer.  I did the same thing to tell everybody before my presentation that I have hearing problem.  The presentation went well and the discussion was acceptable.

I also want to share with you about my recovery of balance which is not 100% yet after 10 months but I have no problem to deal with daily life needs.  Let me share this next time.

Take care,
David(707)

P.S.  I am kind of surprise to know that quite a few teachers in this post.  Maybe we shoud have AT within ANA.  My wife and a few of my sisters (I have a total of 6 sisters) were also teachers.  So I  feel ...

[nannettesea]

Michelle,
I'm now 3 month post-op and as dizzy as I was two months ago.  Do you have dizziness, too?  I hope not, on top of everything else.

Glad your last posts found you feeling better.  When I think I have it bad, I don't have kids to take care of and no facial problems other than no tearing in the affected side.

I'm dizzy all the time, up to 30 hours/week in a fairly low-stress but new job with wonderful, understanding employers who hired a sick person over a well one!  They were definitely sent to me as a miracle.  But don't know if I can keep up the hours, have applied for disability but soon making too much money to qualify.

I know about the difficulty in doing household chores.  I drive, but when I come home after work have to sit in my chair and stay still.  I recover on the weekends, my husband and I have no life to speak of.

I go to this forum every day, so many sad stories and suffering but so much support as well.
Keep writing,
Nan