recovery ?? For those with AN over 3.5cm

[konnie]

Hello Forum:
My sister Konnie is in surgery today, and she has asked me to update this website due to how overwhelmingly helpful it has been for her in this short time of discovery and now surgery.
Here is alittle back ground:

Email Konnie sent 7-30-08 (We just figured out how to post.)
    ( I am a new AN just found out three weeks ago by accident.Thought i had a bad sinus infection.
    my left side of my face was numb went to the doctor and he ordered an MRI
    and they found a 4cm tumer pressing on my brain stem and it needs to come out ASP.
    I have one of  the largest he has seen and it will be a long 10 hour or more surgery.
    My doctor told me about this web site. It seems to be the best thing. The internet can be so
    scary.  I'm very interested to see how things have been going for others that AN tumor over 3.5cm?) My name is Debbie and like to thank Leapyrtwins she has been so helpful and encouraging we (family) are so deeply grateful.

Konnie went into surgery 7:00am this morning and is expected to be 10 to 14 hours long. She is at Hinsdale Hospital with Dr Wiet
and Dr Kazan. They told us they will breaking as much up as they can, she does have a nerve going through the tumor and will probably loose all hearing in left ear. Your stories have been a God send, Thank you.
I am heading to the hospital and I will send updates and keep Konnie updated too.   

Debbie (Konnie's sister)
P.S I'm still trying to figure this posting out I hope I did it right this time.
Thank you for your time and assistance!!

[Jim Scott]

Hi, Debbi:

Thanks for your post on behalf of your sister Konnie.  I'm so glad you've found this site helpful.  You seem to have the posting thing figured out. 

As my signature shows, I had a 4.5 cm AN that was 'debulked' by a neurosurgeon, then, after a planned 90-day 'rest period', treated with FSR (radiation) to kill the tumor's DNA.  Both procedures were eminently successful.  I had no real complication from either the surgery or the radiation and today, a bit over two years later, I'm back to my normal life and have only the slightest reminders of my 'AN experience'.

I hope and will pray that Konnie's surgery is totally successful and she comes out of it with few or no complications.

Any news or further information you may wish to share regarding Konnie's AN, surgery or whatever will be appreicated.  We're a support group and here to help, support, advise or whatever is needed at any one time.  Please avail yourself of the help we are eager to offer you and your sister, whom you seem to be close to and helping very much.  Thanks. 

Jim

[GRACE1]

My prayers and thoughts are with you and your sister.  Please keep us posted on her surgery.  Take care.

[Pooter]

Since we're double-posting, I can Copy and Paste with the best of them so I'll put it here, too.

Debbie - Give Konnie our best after her surgery.  We'll definitely be thinking of her during this time and beyond.  It's great that she has a good support system (including this forum) with her like you.  Recovery comes slower than one thinks and so she'll need help and support during that time.  It's been 3 months (tomorrow) since my surgery and I'm not 100% back to "normal" yet.  Granted, I'm doing most things like driving and working, but I still have some issues that need resolved before I'm back to 100%.  We're definitely pulling for her and are here to help you or her whenever you want.

Brian

[leapyrtwins]

Just talked to Debbie on the phone.

Her sister Konnie is out of surgery - much earlier than expected - and is in ICU.  Drs. Wiet and Kazan were able to remove all of her tumor and her facial nerve looks good.   She is currently in a lot of pain, but I'm sure she will be getting some very good medication to help her deal with that.

Hopefully Debbie will continue to update us as time goes on and at some point, we'll be able to welcome Konnie back as a fellow "postie".

Please keep Konnie and her family in your thoughts and prayers.

Thanks,

Jan

 

[MAlegant]

My tumor was 3x4cm+ and as the doctor said yesterday, was "huge" and was fortunate to find it and remove when we did.  I'm glad Konnie's was discovered and removed.  It's been 3 weeks since surgery and I'm not in any pain.  In fact, similar to childbirth, while I know that I was in pain after surgery, I can't clearly remember, which is a good thing.  Hang in there Konnie, you're through the worst of it and will now get better each day.
Best wishes,
Marci

[Joef]

once you get into 4cm+ recovery does seem to be longer and harder .....  if there are eye issues .. keep up on the drops.. (dry eye can cause other problems, for me the dry eye was the worst part of the recovery) ..

 I left the hospital in a walker .. but now I have the Kayak out every weekend... 

[Pooter]

Woo Woo!  Out of surgery AND all the tumor was taken out... That's great news!  Now, rest as much as you can!  Welcome to postie-land!

Brian

[robynabc]

Hi,

Glad that your sister is out of surgery and she has you to help and care.   There are lots of people that have had tumors larger than 3.5 CM tumors.  I heard a statistic that 15% fall into large tumors from House.    My son had a tumor 4.5 CM + over a year ago. So,  my son who gets a tumor that is supposed to happen to people 30-60 years of age.  He's 18. Only 3000 of them happen a year.  Those are huge odds too.  And of those 15% are as large as his.   How do you like those odds? 

Of course,  there are lots of variables in recovery.  Eric's surgery was 13 hours.  He has recovered from almost everything, his facial nerve was completely spared.  But he has some issues with his throat.  He lost his hearing and that is true of the large percentage of AN patients.  Eric did really well adjusting to  that.  Eric was driving again 2 months.  Probably could have driven earlier just didn't need to.  He was well enough to go to a movie after 11 days.  And he did really well. 

One thing our doc said is everyone is different.  ANs affect everyone differently BUT  there are lots of large tumor people that have done really well and are just out living life.  I would say that it does take about 3-4 months minimum to really feel like you did before surgery and the nerve stuff takes time and so does the adjustment to the SSD.  He also had HUGE brainstem involvement.  Just know that you can have a large tumor and great results.  I consider my son as a great results case.  The doctors think so too. 

Sending sunshine. Hope that helps you.

Robyn

[Pembo]

Good to hear that Konnie's surgery went well. I had a 4 cm tumor and it was sticky which meant 16 hours of surgery but all was removed. Recovery was long because of the length of anesthesia but other than SSD and facial paralysis it wasn't that difficult. I still have the facial paralysis and numbness but after 4 years I can say that I'm still recovering..........Patience..........

[sgerrard]

Good news on Konnie, especially as it was a rush job on a big one. I'm hoping that facial nerve comes through okay. And thanks Jan for keeping us updated on her.

Best wishes,

Steve

[Omaschwannoma]

Would like to send my congratulations on the good news with Konnie and thank you for keeping us updated on her recovery!  I pray all is well and she is on the fast track to a successful recovery! 

[Gloriann]

My tumor was 4 cm at the time of removal. It took 12 hours in all for the two doctors to do my surgery. Even though my facail nerve was left in tact, I had paralysis on that side, which caused a problem, for awhile, when I was trying to eat or drink anything. I had to use a cane to walk for awhile, too, since my hearing nerve and balance nerve were both removed, right along with the tumor.
The recovery period can be very frustrating, no matter how much a person knows ahead of time.
I wish her the best. Keep us posted.

[konnie]

Praise God!!!
Many blessings to sing praises over.
Konnie's surgery was 8 hours instead for 10 to 14. The Surgeons were very please with how well it went. The tumor was cone shaped and was deeper than they orginally thought, but they got it all and are sure they didn't hit any nerves as well as the one going through the tumor. I stayed with her the first night, the pain was rough so we prayed many times and listen to praise music to keep her focused on all the good God is doing. By morning the doctors came in asked her to do different facial moves and she was able to do every single one. Thank you Jesus!!!!
We are so thankful!!! This being day three, Konnie was moved to a new room an had her first real meal, she has to get up and walk 3 times through the day with assistance. She does have pain on the left side of her neck, probably from being in the same position during surgery or due to having to go deeper towards the brain. Konnie is progressing wonderfully. Doctors say if she continues to do well she may be home Tuesday or Wednesday, and she will need 6 to 8 weeks to recover time.
So now we are praying: Praise's to God for his awesome strength and care over Connie and Family and to keep her free from any inflamation and infections. Thank you all so very much for all your comments, I read them to her and she was very encouraged.

Sincerely Greatful,
Debbie

[Jim Scott]

Debbi/Konnie:

I'm so pleased to learn that Konnie had a successful surgery and is on the road to recovery.  May it be a road that is smooth and unobstructed.  Your praise to the Lord is amplified by many others who share your faith.  God bless you all.

Jim