Author Topic: Look at my age and how big this tumor was!  (Read 6269 times)

Taylor

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Look at my age and how big this tumor was!
« on: March 21, 2006, 11:18:29 pm »
I am 6 1/2 post surgery and still using a walker if that tells you anything. I'm also slow with everything and my handwriting is very slow and shaky.  My left side feels asleep but moves faster than my right side (I'm right handed) I have dry eye and i can't feel the right side of my face including my eye. I CAN feel my cheek though. No headaches (yet) I still get a little dizzy if i turn upside-down. I'm too young for this!
Taylor
Translab/4.8 cm AN on right side removed 2/3/06
St. Louis Children's Hospital (next to Barnes-Jewish)/ Jeffery Leonard - Neurosurgeon
Cross-facial nerve graft with muscle transplant
Bad coordination on right side - constant pins-and-needles sensation on left side
21 years-old
Illinois

Taylor

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Re: Look at my age and how big this tumor was!
« Reply #1 on: March 21, 2006, 11:21:41 pm »
6 1/2 weeks that is.
Taylor
Translab/4.8 cm AN on right side removed 2/3/06
St. Louis Children's Hospital (next to Barnes-Jewish)/ Jeffery Leonard - Neurosurgeon
Cross-facial nerve graft with muscle transplant
Bad coordination on right side - constant pins-and-needles sensation on left side
21 years-old
Illinois

Larry

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Re: Look at my age and how big this tumor was!
« Reply #2 on: March 22, 2006, 12:02:01 am »
Taylor,

You are too young for this and we can help you mentally and hopefully, physically help you through this awful experience that you are going through.

There are a lot of posters on this site who have experienced your symptoms and am sure that they will share their efforts to get better. Please search on this site about things like dry eye, or red eye, also dizziness. There are some wonderful tips that will help improve the quality of your life.

We are also here for you to vent your anger. We listen and understand very well coz we have all been through it, one way or another.

You will receive a lot of advice from this post and one thing that I have learned from this site is that the advice is all consistent and has no hidden agenda behind it.

Also, if you need cheering up, the Good morning thread is interesting reading and you can read about some wacky middle aged people (well the others are anyway!!!) carry on.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

shoegirl

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Re: Look at my age and how big this tumor was!
« Reply #3 on: March 22, 2006, 12:02:22 am »
Taylor,

You are right you are way too young for all of this!  All of this has to have turned your world upside down.  You have come to the right place, and I am glad that you found this site.  Everyone here is very open, encouraging, and supportive.  I am sure some members who have had surgery will soon respond with some good advice.

Your tumor was very large, were they able to remove all of it?  What is your doctor's prognosis for your recovery? Taking "everything slow" is okay, you take all the time you need to recover.   Surround yourself with lots of supportive and loving people.  Have you been able to do anything fun?  Movies perhaps?  I hope that you are able to find a new normal and feel better soon.

Suzanne
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

Kathleen_Mc

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Re: Look at my age and how big this tumor was!
« Reply #4 on: March 22, 2006, 07:00:26 am »
Taylor: I was young too when I had my tumor discovered, but not as young as you, I was 23. You must be having a whole lot of thoughts and emotions running around in your head. I can clearly remember this time,  even though it was so long ago. I was angry and very, very depressed. Before this happened I was never so concerned about the way I looked, I wasn't a raven beauty but I was able to acept the way I looked....post-operatively I became very self conscious and critical and frankly I hated the way I looked. Did you loose your facial nerve function? It is very hard to be young and loose your independance just as you were really getting it and I supposed you've had to become dependant on your parents again, been there and done that too.
I can say that things will get better but right now that propobly doesn't mean beans to you, but it will anyway.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Battyp

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Re: Look at my age and how big this tumor was!
« Reply #5 on: March 22, 2006, 07:34:30 am »
Taylor I know this has to be rough on you I can feel the anger in your post.  It was rough on me and I'm in my forty's.  I agree with Kathleen it must be hard to become dependent again after you were just finding your independence.  I dont' have facial paralysis but I do have facial numbness and that not being able to feel that side of the face is a pain.  I keep hoping it will wake up but I'm 7 mos post op and wondering.  I do know that I feel more than I did right after surgery so that gives me some hope.  I used a walker for about 2 mos or so after surgery.  With time you'll be able to get rid of it and at least get you a stylish cane (not that you want that either!).  I'm still shakey but able to walk without assistance it just took lots of time and frustration.  Are you doing any vestibular therapy?  That did help a lot and still does.  I had my surgery in Aug and it was about November before I started to come to and become a little more independent.  I couldn't even feed myself and had to have my 15 year old son and my mom step in.  It was hard not being able to do the normal things I took for granted.  I've escaped in many a movie! (just dont' forget to take a little flashlight with you)

You'll get sick of hearing "it takes time" "be Patient"  I know I did.  I've never been a patient person.  But in reality it does take time.  Please know we are here for you!  My heart truly aches for you.  I can only imagine some of the struggles yet to face you.  {{{{{{{{{HUGS}}}}}}}}}}}}}}

Raydean

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Re: Look at my age and how big this tumor was!
« Reply #6 on: March 22, 2006, 11:45:22 am »
Hi Taylor,

My husband also had a large tumor removed,(6cm) I know how difficult it was at age 50,  I can only imagine how much more difficult it is at your age.  You're right, you are to young for this, but unfortunately life isn't always fair.  It had nothing to do with who you are, or what kind of person you are.  You are still the same beautiful person regardless of the outcomes.  First of all you've shown tremendous courage and inner strength to make it to where you are today.  I'm not sure i could of handled it was well as you have.  Right now Taylor alot of your body's energy is going into healing, surgery was a major event.  As you know healing starts on the inside, in places that we can't visably see, so the improvements seem pretty far away.  Improvements will come.  It won't be overnight, and it may take alot of work on your part but things will get better.

 
Consult with your doctor as to the outcomes that you mentioned.  Organise a medical team to stay on top of the issues.  An medical eye doctor (opthalmologist) to monitor the dry eye and cornea , and possible eye problems. Your eye needs to be protected to remain healthy.  A dentist to help monitor your teeth. Sometimes with facial paralysis the mouth is at risk for increased cavities due to
decreased salivia. A knowledgable neurologist who can help identify the issues and offer advice as to the direction to take.  Use this  healing time to research options, so if needed when the time is right you're ready to proceed.

I'm not a doctor, but I do know that the additional problems you mention is due to having such a large tumor, brainstem involvement and possible hydrocephalus.  These outcomes adds to the feelings of being alone in this, because very few ANer's overall experience these outcomes.  Know that you aren't alone. Those  ANer's with positive outcomes understand because they had the same fears.  Those that have the same outcomes understand too, because they  live it everyday.  Everyone here will walk along side of you as move forward on this journey.

If I can be of help, please feel free to email me anytime.

Thinking of you
Hugs and best wishes
Raydean

 


Do not go where the path may lead, go instead where there is no path and leave a trail.

matti

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Re: Look at my age and how big this tumor was!
« Reply #7 on: March 22, 2006, 11:58:43 am »
God Bless you Taylor

You are right, you are way too young for this! We know how hard this is for you and we are here for you through every step of your recovery process. I too had facial paralysis and all that goes with it. The fact that you can feel your cheek is a good sign. You have a great advantage in the fact that you are so young and your healing process will hopefully be quicker.

Several months back there was another girl around your age or a couple of years older that had AN surgery and had just started college. I will go through the theads and find her and post back.

You will hear this alot Taylor and that is be patient and positive. I, like some of the other posters, got sick of hearing it, but that is the reality of it. Things WILL get better Taylor. I am 8 years post op and life is good.

Larry - I think she is too young for the "good morning" thread. LOL  We need to protect this young lady. Read with caution Taylor.  ;)

Sending a big hug your way and please know we all understand and are here for you. Feel free to e-mail.

matti







3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

ppearl214

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Re: Look at my age and how big this tumor was!
« Reply #8 on: March 22, 2006, 12:17:51 pm »
Taylor

I have to chime in here with the others to say welcome and know that I am sending hugs. Unfortuneately, AN's are non-discriminating when it comes to age. Research does show that they tend to show more in "older" adults, but as you and many others here demonstrate, they also affect the young folks.  Know that we are here for you. Know that we certainly do understand. Know that even though others in our lifes just don't get it... we certainly do.

Sending you hugs...
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

matti

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Re: Look at my age and how big this tumor was!
« Reply #9 on: March 22, 2006, 01:39:32 pm »
Hi Taylor - I found one of the threads I mentioned earlier. I brought it back up and it is posted by lovingchild, regarding her 14 year old daughter. There are a some other's in the thread that are close in age to you.

Hope this helps.

matti
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

HeadCase2

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Re: Look at my age and how big this tumor was!
« Reply #10 on: March 22, 2006, 02:09:06 pm »
Taylor,
  Sorry to see that you've joined our group, but welcome anyway.  I hope you feel better soon.  My surgery was about a week after yours.  Keep after that walker, you have to use it and work it to be able to get rid of it eventually.  I'm no longer using the walker, but I remember taking a walk with it, and then having to sleep it off.  All of this is your brain reajusting, it's using a lot of exra energy trying to relearn now that your "input" system has changed.
  We'll be thinking of you. 
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

Joef

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Re: Look at my age and how big this tumor was!
« Reply #11 on: March 22, 2006, 02:41:43 pm »
at 6 weeks I was still a mess .. I know it hard but keep your head up ! .. practice your walking and hand writting skills !!. dont let people do things for you, even if it takes 10 minutes to walk to the TV from the bedroom ... I'm at 7 months working like a dog like old times  :( .. and still a little wobbly when I'm tried but the walker has been put away !!  ;D to bad the Lacri-lube has not  >:(

« Last Edit: March 22, 2006, 02:43:23 pm by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

***Leigh***

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Re: Look at my age and how big this tumor was!
« Reply #12 on: March 22, 2006, 03:31:56 pm »
Hi Taylor,  Welcome, but not welcome if you know what I mean.  I am so sorry to hear that you have has such a bad experience so far.  Mine was discovered when I was 23 (I'm 27 now) and it seemed like I had the weight of the world on my shoulders. I really did feel, and still do, that I am far too young to have to experience this and make a decision on what to do.  Whilst I have not had to experience surgery (so far) I do want to send my support and hugs to you.  The others are right, there are so many sources of information on this site and so many people able to provide support and give you reassurance that you are not alone.  You will get through this, I am a firm believer in (and I know this will sound corny) "whatever doesn't kill you makes you stronger".  Family and good friends around you are key to getting through your nightmare and everyone here will help you as much as they possibly can.

This is a very different situation but when I was 18 I was knocked down by a car.  I suffered a broken leg, broken and bruised ribs and nose ( I looked like I had done 10 rounds with Mike Tyson!) but what I remember the most was the feeling of helplessness and the loss of my newly gained independence.  I was at university and living away from home and all of a sudden I had to move back in with my parents.  Whilst they were and still are really great parents and tried to do everything they could for me it was so frustrating not being able to do all of the things I was used to doing, driving to see my friends, going out dancing and even walking down the street to go shopping.   Things like getting down the stairs in the morning took it out of me that I ended up sleeping for a hour or so as soon as I made it to the couch.  Although you shouldnt try and do too much too soon, you can do small things to help you feel like you  have has much independence as possible.  I remember thinking "How do I get this cup of tea/ juice through to the other room when I have crutches without spilling it".  It is amazing how resilient how you can get! My Aunt got me a back pack and a flask so that I could pack up while in the kitchen and take it into the other room.  I know this particular experience is no where near as bad as what you are probably experiencing now but I think I probably share and understand some of your frustrations.  If you want to vent some of your frustrations please feel free to email me.

Take care

Leigh


thecakes

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Re: Look at my age and how big this tumor was!
« Reply #13 on: March 22, 2006, 05:26:16 pm »
     Thats very young to have such a burden.  Hang in there.  It's not like its cancer.  Its to bad this had to happen to you, but you'll be OK.  Your life will go on happly and healthy.  I stated in a  post before that we are all healthy people, we just have this stupid thing in our head.  My dr. told me it will take "baby steps" to get better. It did take me baby steps too.  Someone your age will not stay in a walker.  Little by little things will get better.       Stay strong,  Patti

Crazycat

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Re: Look at my age and how big this tumor was!
« Reply #14 on: March 22, 2006, 05:39:38 pm »
Hello Taylor........

Your post really hit home with me, as I have suffered through many of the same problems you're having. In fact, this week marks the six month period for me. Below is a copy/paste of a post I made last December. Although this is rather redundant on my part, the information is pertinent and I think you will find it interesting.

 Ã‚ Lately I've been feeling pretty good. I just came back from jogging - every day -and am writing this while inbetween sets weight-lifting. Exercise for me has always been a creedo and a mantra. While something like an Acoustic Neuroma may be something that can just "happen"
to anyone, staying in shape as well as good nutrition are the tools or weapons by which we can fight back.

 Ã‚  Please do not feel too discouraged that you're still in rough condition at the 6.5 week mark. I remember I too was hobbling around with a walker at a rehab hospital three weeks after surgery - and I was in great shape going into surgery. It only took 2 weeks to wipe me out after years of physical conditioning. Did you lose your hearing on one side? The left side of my face is still numb but it is getting better like the doctors said it would. This is due to the "insulting" or stretching and bending of the nerves which will eventually right themselves. It takes time and they weren't kidding when they told me "long recovery". The good thing is, after everything I went though, I haven't had
to take so much as an asprin in over 3 months! But then, as big as the tumor was before it was removed, I never had headaches from it.
On the down side, I do get tired fairly easy and my equilibrium has been compromised - not surprisingly. Also, my handwriting is atrocious!!
I used to have excellent penmanship and now I can barely hold a pen correctly. This is the problem that concerns me the most. However, I was told that this too, will eventually return.

 Ã‚                                            **********                           **********

 I was diagnosed with a 5cm x 5cm AN in early August.
I'd been dealing with symptoms for some time, having lived with double vision since Jan. 2002.
I'm an athlete of sorts and had been running 5 miles per day and weight training so, although
the double vision was always there my equilibrium hadn't been effected and I could work around it. I'm also a musician and thought that the hearing loss in my left ear was due to loud music - I'd been playing 4-5 nights every week so it didn't surprise me that it was finally starting to  wear on me. It wasn't until Feb. 05 when my equiibrium took a turn for the worse that I took action and had some tests done. My initial impression of my condition was either a brain tumor or M.S. back in 02, but because I had control of it through exercise and nutrition I thought I'd overcome it.
 Ã‚  Last Feb I got worse and continued to deteriorate. When I was jogging downhill I couldn't
stop running or even slow down unless I grabbed on to something like a sapling or a street sign to break my forward momentum; I'd stagger around like a drunk and could not, for the life of me, walk a straight line. Also, my hand writing was deteriorating.
Finally, I went for help. MY primary care doctors at Mass General ordered an MRI and the next day the phone began ringing off the hook after the results came in. The day after that, I found myself sitting in the Neuro-oncology department at Mass General waiting to see Dr. Barker, the staff neurosurgeon. He had said, after viewing the MRI photos, "This guy is still walking around?"
Both he and Dr. McKenna, the ENT surgeon, had never seen anyone with an AN growth that size. It would seem that fitness does indeed play an important role in one's survival.

 Ã‚ I had two surgeries; the first being in mid-August where a shunt was installed to remove C.S.F.
build-up in my head. The tumor was so big it was compressing the briain stem and preventing
the fluid from draining. It was also pressing on the cerebellum and effecting my left side - I happen to be left-handed. I was in the hospital two weeks for that procedure.

 Ã‚         The date for the tumor resection/debulking was set for Sept. 21st - 3 months ago.
 Ã‚ During the interim - about one month -  I had plenty of time to reflect on what was in store for me, i.e.: facial nerve damage, swelling of the brain, permanent deafness, problems with anesthesia, catheders, entubulation, etc.....lots of fun!! After having had a taste of what it was
going to be like with the shunt installation I was worried. The amazing thing was that after I was home for a week I was jogging and started playing my gigs again even though my left hand was somewhat impaired. I noticed that I was much more sure-footed than I had been but still impaired. That thing had to come out.  I made a conscious effort to stay as fit as possible because I knew next surgery would be much harder to endure. I was right.
When I woke up in ICU I couldn't even utter a word. I was in for three weeks, two in the hospital and one in a rehab hospital, hobbling around with a walker.

 Ã‚   I noticed that my double vision had kicked in in earnest - I mean full blown double vision. I wore an eyepatch every day. Also, there was what can be considered, some facial paralysis on the left side. It was like, and still is, like I'd been shot up with Novocain that never wears off.
I want you to know though that these problems have been improving little by little. I no longer wear an eyepatch, chew more freely when I eat and no longer requier a straw when I drink.

 Ã‚ Last Monday, the 19th, I visited with Dr. McKenna, the ENT surgeon that worked on me. I asked him about my facial numbness again. He touched a place on my left cheek and asked if I could feel that. I could and he said that the feeling will come back in entirety. It could take up to a year but it will get better. It already is after three months. He also said that what I was feeling was from the "Trigeminal Nerve," which is responsible for sensation and not the facial nerve.
 Ã‚ At the end of our session I thanked him for having saved my life. He said, "You have no idea how big that tumor was". He also said that he does fifty to sixty AN surgeries a year and has never seen a growth like the one I had.

Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.