Author Topic: Pinch me now I want to wake up!  (Read 11416 times)

Joseph

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Pinch me now I want to wake up!
« on: March 04, 2009, 08:38:38 pm »
I know I'm having a nightmare...A well detailed, specific, painful, unrelenting, and physically exhausting nightmare. I WANT TO WAKE UP!!!
And when I awake my face will be normal and none of this will have happenend; and if I'm not dreaming, when I go to sleep and I dream away my nightmarish reality, I never want to wake up again...
Three resection surgeries; 2008-2010. Tumor @diagnosis: 4.5cm diam. brainstem "C" shaped Remaining tumor: 2.5cm wide by 3.3cm long/ no more brainstem compression but residual tumor rests near brainstem. Cyberknife @ BMC completed 11-11-2010.

MAlegant

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Re: Pinch me now I want to wake up!
« Reply #1 on: March 04, 2009, 11:11:14 pm »
Joseph,
I think many of us (definitely me!) have similar thoughts.   Especially in the morning, before I'm fully awake and various levels of pain and discomfort set in, I feel "normal".  Then I wake up and reality smacks me.  Where exactly are you in this process?  Tell us the details.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Joseph

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Re: Pinch me now I want to wake up!
« Reply #2 on: March 05, 2009, 11:07:48 am »
Well Marci thanks for asking.

I am new to this discussion forum and spend most of my days very angry now as I imagine most everyone else here feels the same. I find it very difficult to talk about and my girlfriend would rather not discuss it at all. Last april I began waking everymorning to regular headaches. At first I assumed the headaches may have been from something else like dehydration or a large variety of other reasons. About a decade ago I served in the USN and lost hearing in my left ear as a result from audiologists I saw as noise pollution. Turns out years later this was not noise related but rather the initial sign of what became a very large brain tumor.
   According to the ENT and other brain surgeons the tumor was so large it was pressing on my brain stem so much it caused a shift in many parts in my head. They told me if I didn't get emergency surgery to relieve the pressure build up I would not live much longer. Reluctantly I agreed and underwent two seperate open head surgeries last summer. Swelling became an issue for me both times and the second surgery required removal of abdominal tissue to stop cerebral spinal fluid leaking.
   Healing from the second surgery was bad I was in so much pain and the surgery site bursted open a few weeks after, and I had to return to the hospital. I was also left with a blood clot in my neck and poor circulation through nerves in my neck. My face still lacks movement and the tumor is not all gone suggestions are being made now to the remaining treatment. Some are saying surgery others say radiation, I am still in shock...
Three resection surgeries; 2008-2010. Tumor @diagnosis: 4.5cm diam. brainstem "C" shaped Remaining tumor: 2.5cm wide by 3.3cm long/ no more brainstem compression but residual tumor rests near brainstem. Cyberknife @ BMC completed 11-11-2010.

Jim Scott

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Re: Pinch me now I want to wake up!
« Reply #3 on: March 05, 2009, 01:39:24 pm »
Joseph ~

Thanks for posting.  If you need to vent, this is the place to do it.  Many of us have 'been there' in one way or another.

I'm sorry to learn of your troubles stemming from (what I assume was ) a huge acoustic neuroma.  Two skull surgeries are no fun, neither are CSF leaks, facial paralysis or the blood clots you've had to endure.  A very rocky road to travel and good reason to characterize your experience as a 'nightmare'.  I would hope that, with all you've been through, non-invasive radiation can be used to kill the remaining tumor.  I truly hope your AN-related troubles are almost behind you.  If you have any questions or need more support, feel free to post and ask.  We'll be here for you.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Sue

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Re: Pinch me now I want to wake up!
« Reply #4 on: March 05, 2009, 02:13:34 pm »
Dear Joseph, I am so terribly sorry that your AN had so many years to grow and become life-threatening.  :'( These AN's are so strange, because one person may have so many problems that leads to diagnosis when the tumor is so small, and other's don't have much trouble until the darn thing is huge.  Doesn't seem like that could happen, given that the area in which these things grow and thrive isn't that big of a space. But, that's just the way it is sometimes.  I wish I had some words of comfort for you.  I have spent many a night in bed, thinking about why in the world would something like this happen to me, and how in the world am I going to learn to live with the many symptoms that will accompany me the rest of my life.  But, my symptoms don't come anywhere near what you are experiencing, so I know I am very fortunate. Fortunate, but, still, having to learn to adjust to a new "normal".  I can't even comprehend what you have gone through.  But, truly, you were on the edge of a greater disaster than most of us, and you were literally brought back from the brink of a tragic ending.  Hard to be grateful when the cure entails pain and misery.  I can only suggest that counseling might help you deal with the anger issues and help you along the road to acceptance.  The five phases that we go through on any life changing event are:  Denial, Anger, Bargaining, Depression and Acceptance.    You've got the first two down pretty good!  ;)  I think I finally reached Acceptance, but I do revisit Anger now and then, so I know how easy it is to get stuck there.  I am afraid that you are slipping into Depression and by-passing Bargaining altogether.  Of course your sleep comments might be Bargaining:  "If I just sleep a lot, maybe it will go away."   But I am worried you might find yourself deep into Depression and not get out of that one.  Serious bottom of the barrel Depression really would need the help of counseling and maybe some meds to help you.  You might also consider alternative medicine - acupuncture, meditation, yoga, etc -- as a secondary help for you.  Of course, you will need something stronger to finally kill the darn thing as holistic medicine can only do so much, but you get my drift, I think.

I truly hope that things get better for you.  I was so saddened by your post.   :(  Do NOT let this control your life.  Find the doctors that can help you with the symptoms.  Fight for your health.

Take care,

Sue in Vancouver, USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

nancyann

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Re: Pinch me now I want to wake up!
« Reply #5 on: March 05, 2009, 02:15:17 pm »
Hi Joseph:  WHEW !   You HAVE BEEN THROUGH IT ! !     I'm so sorry to hear about the complications - like the usual expected post op symptoms aren't enough.   Exactly how long ago was your surgery ? - is it April '08 ?   I'm hoping the facial paralysis will improve, & you won't need further surgery for this.   There are several of us here with permanent facial paralysis so down the road if necessary we can help,  but let's hope your nerve is just sleeping & hasn't woken up yet.  
I am sure you are in shock, who wouldn't be ?  I agree with Jim re: radiation to get the remaining tumor.
Hang in there,  we're all here for you,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

Joseph

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Re: Pinch me now I want to wake up!
« Reply #6 on: March 05, 2009, 04:54:05 pm »
Thank you all so much with the wonderful advice and comments. I attempted to post my picture on my profile so all can see me and just how I look. I value all of your words of inspiration and hope. I need all the friends I can get...
Three resection surgeries; 2008-2010. Tumor @diagnosis: 4.5cm diam. brainstem "C" shaped Remaining tumor: 2.5cm wide by 3.3cm long/ no more brainstem compression but residual tumor rests near brainstem. Cyberknife @ BMC completed 11-11-2010.

Soundy

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Re: Pinch me now I want to wake up!
« Reply #7 on: March 06, 2009, 08:53:58 pm »
Sorry you have been through so much ...

It is OK to get mad ... trick is learning not to get stuck there in Madville ... I visit the place and it gets
me down ...have learned to pick myself up and move on with help from people here...

come vent away ... that is also good for you ...getting your feelings out to people who understand ... my
husband is great most of the time but then others times he is like ...OK it has been 20 months and this should
be over not really understanding alot of the issues I now have will never be over ...then he goes back to
the nice understanding guy I love ..

3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Tamara

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Re: Pinch me now I want to wake up!
« Reply #8 on: March 07, 2009, 10:35:22 am »
Hi Joseph,
  Sorry you've had so much trouble.  It can be a long road - I remember what it's like waking up feeling normal.  Then having to untape my eye, use drops all day long, food and drink dribbling out my mouth, and dealing with the aspect of not looking like normal.  Remember to celebrate every move forward, no matter how small.  Also remember that you ARE still here with us, and that's good too!
  I wouldn't have chosen to get on this particular boat ride, but am happy for the companions found here. 

Best wishes,
Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

wendysig

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Re: Pinch me now I want to wake up!
« Reply #9 on: March 10, 2009, 06:36:49 am »

  I wouldn't have chosen to get on this particular boat ride, but am happy for the companions found here. 


Joseph,

Hi and wellcome to this forum.  I'm sure you'll find many people here who can relate to your experience, you've certainly been through the wringer!  I hope you and your docs decide soon  on a course  of treatment for the remaining portion of your AN.  Whether you choose surgery yet again, or radiation, I hope it is the last course of traetment you will need. 

My husband was s ilently flipping out after my diagnosis and shut me out in his efforts to not influence my decision, which after all was mine to make, and trying not to make me more scared than I already was.  I wish he would have talked to me, because like you, I felt abandoned.  Let your girlfriend know how you are feeling, I'm sure she will be there for you.

Sending healing thoughts your way,

Wendy

 
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Syl

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Re: Pinch me now I want to wake up!
« Reply #10 on: March 13, 2009, 01:55:31 pm »
Joseph:

Welcome! You've been through so much. For me this discussion forum has been a great source of comfort. Family and co-workers have been wonderful, but I try not to alienating them by speaking about me and my AN too much. But the folks here are always willing to "listen" and offer support. So I suggest you hang around with this crowd. I can't imagine having gone through this experience without the AN discussion forum. 

I'll be sending good thoughts your way. Hang in there.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

kathylittlejohncobb

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Re: Pinch me now I want to wake up!
« Reply #11 on: March 13, 2009, 02:34:37 pm »
Hi Joseph,
I hope some of the things you must face are going a little better for you these last few days. 
I agree with others that you need to treat each small improvement and each small step as important.  Celebrate each one!  Also, if you and your girlfriend haven't had that heart-to-heart talk, it really is time to sit down and do that.  Not knowing your/her age or either of your personalities, it is hard to know if she is just scared to discuss these important issues, or if she is scared for YOU to discuss them with her.  ??? I'm sure she has seen your anger about your predicament....Not to get down on you for your anger, but it might be hard for her to know how to approach the topic.  Just something for you to think about.   :-\
Another topic I feel strongly about is your physicians.  If you do not have a good, secure, trusting relationship with them, perhaps it is time for you to find a different group of doctors, even though you've already had two major surgeries.  I assume that you have searched online for various medical facilities; if not, doing that could help.  House Institute in Los Angeles is excellent, and perhaps they or another insitute could review your records and help you further.
One small sideline:  When I had my AN surgery, they took some abdominal tissue, too, but it was just to fill in the gap where the tumor had been.  Could this have been what your physicians were conveying?  Just a thought.
Joseph, I wish you the best in your trying times.  Do remember that you are cared about.  Please let us hear from you some more.
God bless,
Kathy
Retrosigmoid at House/St. Vincent's in Los Angeles 4-4-06; partial hearing saved on AN side;
Dr. Marc Schwartz & Dr. Rick Friedman, my heroes!

GRACE1

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Re: Pinch me now I want to wake up!
« Reply #12 on: March 13, 2009, 02:38:54 pm »
I am so glad you found this site so you can get support from some great people.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

klangel

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Re: Pinch me now I want to wake up!
« Reply #13 on: March 30, 2009, 09:34:05 am »
hey joseph,   i understand completely where you are coming from. i have been out of my surgery for 4 years and am still stuck in the angry/depression seesaw. i i have some sort of refusal to accept that i must live with such a poor quality of life. those doctors painted a picture of the best case scenario and it turned out to be the worst. or hearing your story maybe the second worse! and yeah they use your belly fat to stuff up the hole they leave in your head.(they dont even take it all out!habut you have another nice scar) which approach did you have? and how long was your surgery? did you spring the leak second day? im glad you found this forum. there is so much good advice from folks on here and its a great place to vent which always makes you feel a little better. its nice to know that there are folks who understand. my husband, children and friends still dont get it and i suspect they never will. i dont mean to sound so negative but as someone aluded to before its like the stages of death and i think we get stuck in them maybe even for a long time...people will always tell you well youre alive... esp. docs but youre the one who has to learn to live with the tangled wires in your head which will always cause so many issues. i try hard to make strategies to deal but cant say im there in the acceptance stage yet. who knows maybe ill never get there. i have sought some alternative stuff which helps out and continue to seek doc after doc (now that i have medicare ha disability makes you wait 2 years!)(but thats another story) if you can check out chiropractic, biocranial, massage therapy and lymphatic drainage, also a physiatrist. i also see a psychiatrist for my anger and depression but not a counsellor . saw a couple of them and it cant work because they can only go so far unless they could be an an patient they dont get it either. im sorry that you have joined this hellacious nightmare but you arent alone. perhaps if we all pinch each other well wake up! stay strong.

Catflower

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Re: Pinch me now I want to wake up!
« Reply #14 on: March 30, 2009, 11:29:59 am »
Joseph:

I'm with you "pinch me and if I don't wake up; I don't want to wake up".  I think I'm having one of those days today.  I miss my old life so much; being able to hear, not having the wonky head, having my balance, being able to work in my flowers without stumbling all over the place, enjoying the beach sounds and walking in the sand, etc.  I told my husband today that I miss doing what I want to do.  He asked me what I wanted to do now and I said "just die".

Linda in WV

 


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