Chris surgery

[chrissmom]

Hi all,
Thanks for your help and the information that you provided about your experiences with large tumors.  We've had quite a busy schedule lately.  Chris' surgery is scheduled for June 15.  He recently had surgery for hydrocephalus and since that time, we are now feeling the full effects of the tumor.  His balance is so impaired that he needs a wheelchair.  His brother is getting married on Saturday and Chris is best man but he will be in a wheel chair most of the time.  He can walk but we're afraid that he will fall. I'm also seeing some effect on the facial nerve (mouth droops at times).  I'm still not sure what to expect after surgery.  With a 5cm tumor, I worry constantly.  The doctors may have to do a two-staged operation, each a month apart.  The brain tells them when to stop.  This surgery will be retrosigmoid and if they need to go in again, it will be translab. 

[Battyp]

Wow mom are you on overload yet?  One son getting married and one son with health problems how are you doing?  Keeping Chris in my prayers for a speedy recovery.  Hoping all the bad stuff has happened prior to surgery instead of after!  Sending extra prayers your way! 

[Larry]

We are here for ya Mom,

Keep positive.


Laz

[nannettesea]

Hi,
Where is Chris having his surgery?  Is the team very expert at AN surgery?
That's a large tumor...it's always REALLY important to have the best surgeons possible....
Nan

[Pembo]

Great thoughts coming your way for your soon-to-be married son, Chris and you, the mom! Take care of yourself too.

[Crazycat]

Hi Chrissmom,

 Ã‚        You know, I was practically in the same boat as your son: 5cm x 5cm tumor with hydorocephalus. I had the shunt surgery a month before the tumor surgery. My equilibrium was the worst of it, along with the hearing loss. No headaches though - thankfully. I'm much older than Chris - I'll be 49 this month - and came through the surgery well,  mostly because I was in pretty good shape going into it. I'm jogging 2 miles a day and working as a musician. While it's frightening to see someone that young with an A.N. so advanced, I think he'll get through as long as he has experienced doctors working on him as I did. After all, he's still a very young person.

 Ã‚       Things to watch out for: Hopefully he writes with the hand opposite the A.N. is on. Tumors that big usually short-circuit a person's penmanship if they're on the same side as the writing hand. I had my surgery in September and I'm still struggling with getting my handwriting back. I can't even hold a pen correctly. They tell me this will come back but over a long period of time.
 Ã‚       A tumor that big my be entangled with the facial nerve. Make sure the doctors talk about this and plan a course of action around it such as leaving a bit of the tumor behind after it's been debulked - as they did with in my case. Cutting the facial nerve should not have to be an option.
 Ã‚       Steroids will most likely be used to reduce brain swelling. They work well but can also screw up the bodies metabolism. The person may become weight-prone months after the steroids have been stopped, giving them the excess weight as well as the "moonface" look.

 Ã‚      Have to go now. Please keep us posted,   Paul

[Jeanlea]

Chrissmom,

I will be thinking of you and your son.  Hope all goes well with his surgery.

Crazycat, I'd never heard of a person being weight-prone after taking steroids.  How long would you have to take them before having problems.  I was given steroids after my surgery for about 12 days.

Jean

[chrissmom]

Thanks everyone,
Yes, I'm on overload but at least the school year is over and I don't have to worry about subs or plans for a while.  Chris' surgery will be done in Pittsburgh.  He has great doctors, they both worked at House.  They have alot of  experience. I'm hoping that the facial nerve is just riding over the tumor but if entangled, they have discussed nerve graft.  Unfortunately, Chris is already having writing problems and the tumor is on the side of the dominant hand.  He has mastered alot with his left hand .  Today I got him a walker and he is doing great with it.  He did not want a "granny walker" though.  Nope, he had to have the one with handle bar brakes and fast wheels.  Crazycat, what instruments do you play with your hands?  Please stay in touch all of you.  You have truly helped me get thru this.

[Battyp]

Hey if he's got to have a walker he might as well have a fun one!  Not to mention it will be good for his coordination later.    Sounds like he's got his humor which will be a big help in healing!  Know we're here for you...is you're school year over?  I'm on summer break...YEAH!

[Crazycat]

Chrissmom,

         I'm a bass guitarist primarily, but also play six string acoustic and electric. I've been playing professionaly for over thirty years.
So, as you can well imagine, it's been quite an experience having my acoustic nerve as well as my vestibular system ripped out of my head. And here I was thinking that it was the loud music making me go deaf! Not so. God only knows how long that thing had been growing in me.
   I started having profound dizzy spells in 1968 at age 11 that seemingly came out of nowhere and lasted only a short time. The last time I experienced a dizzy spell like that was in 1987 at age 30. They were few and far between but could have represented the genesis of the neuroma. I never told anyone about them even as a child. I had excellent hearing up until 1999 when I first started noticing my left ear was going deaf. In 2002 I started having double vision. I continued to go on with that until my equilibrium went on me in February 2005. Around that time I noticed my handwriting was failing me. I kept going as long as I could by virtue of physical fitness. I'll never forget how bad it was getting just before I went for treatment last summer. I knew that I was dying and that I just couldn't go on any longer. It's hard to describe that feeling. It was like something Carlos Casateneda would have described in his books on Indian sorcery, "The Teachings of Don Juan".
        The amazing thing was that I continued working as a musician right through the worst of it. I don't know how I held on for so long. I had enemies around me that accused me of being a hypochondriac and even laughed at me upon learning of my official diagnosis. All in all it was an amazing experience that made me a much stronger, better and more mature person than I had been before.


   And Jeanlea, yes, it's true: steroids lead to weight-gain, especially after long term use. Why do you think high school and even professional athletes take them to bulk up, making them heavier and stronger?

  Take a steroid such as Dexamethasone or Decadron. Do a search on Google and check for side effects and see for yourself!

Take care.......Paul

[Battyp]

I can attest to the weight gain on decadron..I blimped out! 

[ppearl214]

Was on decacrap for 3 wks, post radiation... yes, weight gain but keeping it mind that you're only on it for short term helps. There are worse things in life to deal with than the meds....

Please give Chris a major huggle and we're cheering ALL of you on! What a terrific mom you are... and I have faith in Chris to come through this with flying colors!!!!!!!!!  Please tell him to hang tough and anxiously waiting for the updates!

Be well!
Phyl

[TaylorsMom]

Hi Chrissmom,

My heart goes out to you as we are in the same boat.  My daughter (Taylor) had a 4.8 cm AN removed Feb 3rd.  She turned 18 on March 11, the day after she was released from the hospital.  A 5 week stay for recovery and much rehab therapy.  About a year ago we started to notice she was walking funny.  She seemed to lose her balance sometimes.  Her Dad and me would look at each other and wonder what she had been up to.  Had she been drinking? Taking something?  We didn't know.  About the same time she started being a real slob.  Food stuck to her lip and chin while she was eating that she didn't bother to wipe off.   We now know she couldn't feel the food on her face, but she never said anything about it being numb.  Finally in January she started saying she couldn't write or type as fast as she used to and couldn't walk a strait line no matter how hard she tried.  We expected the doctor to say she had an ear infection.  Wow if only it was that simple.  3 days later the MRI showed the tumor and 4 days later she had a 12 hour operation to remove it.  The morning of the MRI she woke up with a bad headache and didn't want to go to school.  She hadn't missed a day since Christmas break.  She didn't seem to have headaches any more than normal and ibuprofen always made them go away.  Her tumor was pressing on the brain stem and pressure was building up which explains the headache on the day of the MRI.    That was the end of attending school, but she did do enough homework that the graduated with her class on May 21st.  She walked in with no walker or cane looking like she had been drinking all day but she walked!!!!!!!!  A big accomplishment considering she couldn't even pull herself up in bed right after surgery. 

You and Chris will be in my thoughts as you face surgury on Thursday.  Hang in there and remember you are not alone.  Best of luck to you.

Kathy

[TaylorsMom]

Oh and yes , she gained weight too.  Lost about 15 or 20 pounds at first because she couldn't swallow but then gained it back plus more.  Just one more depressing thing to deal with for her. 

Kathy

[chrissmom]

Taylorsmom,
Your story sounds just like our story.  We noticed Chris walking funny too, a strange gait and he held his hand in an odd way.  His balance got worse, and his handwriting is so bad that you can't read it.  He was upset about a week or two ago that he was having some involuntary movements when using the mouse.  He is actually worse since the shunt surgery but the doctors said that the spinal fluid was probably cushioning the brain stem somehow and now we see the full effects.  He is anxious to get the tumor out but I don't think he is aware of the complications and the long recovery.  My heart goes out to Taylor.  You must have been so proud to see her walk without the walker at Graduation.  That was probably a big boost for her too.  Soon she'll be walking so much better and this will all be a memory.  I feel for these young kids having to deal with this.  I keep telling Chris that God must want him to work with deaf children or something like that.  I told him to look for the meaning.  It's got to be there.  Take care.