Trying to find peace...

[sarahinPA]

Well it's Wednesday, my surgery was Friday and I'm still in the hospital. Surgery was a little over 12 hours, they removed 97% of the tumor and did not damage the facial nerve. Doctors said my balance was already compensated, having some dizziness and pain in my legs from being in surgery so long. I had a horrible reaction to anestesia and shook for 24 hours straight.now I'm having trouble swallowing. My an side of my throat is basically paralyzed, not allowing me to swallow.  They are discussing another surgery to isert a peg tube into my belly. I'm very scared because of the anestethia reaction. My neurosurgeon said this type of anestesithia is much different, so not to be worried. But of course I am.   

My head hurts when I sit up but is not as bad when I lay or stand. So my recovery is coming along slowly bit surely I guess 

[Jim Scott]

Hi, Sarah ~

Welcome to 'Postieland'!  I'm so pleased to learn that the surgery went well but sorry you're experiencing so much trouble from the anesthesia.  I hope these issues are quickly resolved.  For now, rest and do whatever you have to do to get well enough to leave the hospital and begin your recovery in fighting form.  Thanks for posting.  Keep us updated as you can but don't worry if you can't.  We'll understand. 

Jim

[Dolwin]

Congrats on the positive outcome with your surgery, Sarah (no facial paralysis, 97% removed).  You are in my thoughts and prayers as your recovery progresses - I hope you quickly overcome the after-effects of the anasthesia and can get closer to your old self that much sooner!

[Mei Mei]

I'm so sorry you are having these problems.   I was always told the first three days in postie land are the worse.   Make sure you leave the hospital with a script for balance therapy.   It really helps.   I am over a year and a half post op and still have issues with balance.   I'm so glad to hear your facial nerve wasn't compromised.   They were wise to leave some so that you didn't have damage there.  Did they say what they are going to do with the remainder?   Dr. Kondziolka there is a world expert in the radiation option so I know you are in good hands.    Remember to take baby steps in the year to come.
Hugs,
Mei Mei

[moe]

So sorry to hear about the problems with the swallowing. Hopefully it is resolving itself, but you must get that nourishment so if the tube is necessary, it won't be permanent. Hang in there, it is definitely a journey. There have been a number of members who needed the feeding tube temporarily but then had it taken out (can't remember names).
Peaceful wishes,
Maureen

[Mei Mei]

My father had a feeding tube put in because of a swallow problem.   He went to Adventist Rehab Hospital and had Vital Stim.  It;s a new kind of therapy in which they put electrodes on your neck where your larynx is and turn up the electricity.   You do this 3 times a week as an out patient and when the speech therapist thinks it's time, you go for a repeat barium swallow test.   It's tremendous.   After a month or so of this the larynx is much stronger.   I've watched it on the monitor and what a difference this Vital Stim therapy makes.

Go for it so you can get the tube out.
Mei Mei

[Rivergirl]

No worries about the peg tube therapy, that is a piece of cake should not take long at all.  Sorry about your throat, that must be so disappointing, hopefully you will regain the swallowing soon.  Best of luck, I know it is hard right now but it will get better.

[sarahinPA]

Just in case anyone has missed my other posts. I am home, came home yesterday which made 6 days in the hospital. I was sent home with the feeding tube in my nose but it's ok. Just sad that I can't enjoy my moms cooking while she's here! Tinnitus is a lot louder than it used to be, but even with it I can hear some things from that ear! Can't hold a phone up to it but I can hear directional sound and people on my
Right side!

My an ear feels very numb and full. Is that from the trauma and will that go away? The incisions isn't too soar, I got to wash my hair today which was amazing!

[vsfunkhouser]

Sarah... I will soon be having surgery and have so appreciated everyone on this forum's support and encouragement.  Just seems like everyone has their own story to tell... but in the end all is well!  I am trying to stay positive and some days it is not so easy but one thing I do know is that God is with you and your faith in Him and the prayers from your family/friends will carry you throughout this journey. I obviously can't tell you that I know what your experiencing but I will pray for your continued recovery.  Blessings, Victoria

[sarahinPA]

Thank you Victoria and good lick with ur surgery. This first week has been a journey, although I have had minimal complications there have been a few and I pray that neither you or anyone in the future goes through these too.  I also had days of worry, but like my doctor told ne. You must find  peace with it and let the rest up to them and god. Having this attitude really helped me going into the surgery. I believe trying my best to keep this attitude helped me get string quick. The doctors were shocked by the complications I've had. According to them throat problems are rare as well as bad abasethia reactions. I know u will do great, just continue to stay positive and keep faith!!!   Keep us updated on all of your progress!!

[New girl]

Hi Sarah, I am glad to hear you are home.  I have been following your thread since I am having surgery in Sept.  Thanks for posting your progress - it is much appreciated.  Hang in there!  Best wishes.

[sarahinPA]

New girl, good luck! I'd be happy to chat on the phone as soon as this feeding tube is out! I'm going to figure out how to get on the willing to talk list too

[mk]

Hi Sarah,

I have been following your thread. Sorry you have had a bumpy road, but on the bright side your facial nerve is intact and it seems that you don't have serious balance problems. Keep in mind that nerves heal, they just need time. I was also warned that swallowing problems were possible - but from what I have seen here, they tend to resolve sooner or later. Swallowing problems can also be improved with appropriate therapy. This is how it is with these surgeries, you never know what challenge you will face. Patience is the key. Give yourself plenty of time to heal.
It took me almost 3 months for my trigeminal nerve and neck pain to improve, but I can tell you that now at 3 months post-op I feel overall much better. You have a positive attitude and this is great. Keep us updated.

Marianna

[sarahinPA]

Hello to all my an friends...

It's been a bad week on my end , Monday morning I awoke with s cough and chest pains. Came back to the hospital in an ambulance and was admitted with a blood clot and pneumonia in my lungs. Thought to be from a long surgery (12 hours) and having such a hard time walking after surgery due to positioning. So, I'm still in the hospital, waiting for my blood thinner medications to be at good levels in my body. Docs think I could be here till Monday at the latest. Good news is that they took out my feeding tube today!!! I got to eat my first meal since before surgery almost 2 weeks ago!

I'm hanging in there, my spirits were down today, I miss my home and can't wait to get home!!

I'll keep u all updated!!

[Mei Mei]

What a story.   I hope next week goes better for you.  Keep hanging.  Home is on the horizon.  I hope the meal  was delicious.   I remember my first meal after three days.   Yours was a long stretch.   Keep ordering those hospital meals and hope you are well enough to go home by Monday.
Hugs,
Mei Mei