Author Topic: Seems my "buddy" grew...  (Read 4192 times)

petgroomer

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Seems my "buddy" grew...
« on: May 14, 2010, 05:52:52 am »
Just recieved my MRI report.  Bums me out.  Last July in Toronto my vagal schwannoma was 5.6 cm X 3.9 cm.  The new report from Ottawa states it is 7.1 cm X 4.1 cm.  They say it is really inconclusive because I could have been in a different body position on the first MRI at the other hospital.  Therefore, the tumour may always have been this size.  hummmm...
Anyway, I'm bummed out because I actaully put this under the rug, and moved on with my life.  Don't think about it (too much), talk about it at all, and don't worry about it.  Can't change anything and they won't/can't help me in Ontario, not even the Cyberknife is safe for me I am told... :(  :(  :(
I needed 5 mins for a cry,, just 5 mins.  I even stated "Sorry for crying, I just need 5 mins to get over this, then I'll be back to my bubble self".  Then I would be over it and move on once again.  Well, turned out that I was accused of feeling sorry for myself.  I won't go into detail, but all I wanted and needed was 5 mins...  and it didn't happen.
It's amazing how someone can be strong and not one word of how they are coping is mentioned, but one show of weakness and it's squashed like a bug.
Anyway,,, It's Friday and the broom is back out to sweep this all under the rug once again.
No need for any replies, I just had to get this off my chest to others in my situation.  Cause really, there is no one else out there who understands.
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

CHD63

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Re: Seems my "buddy" grew...
« Reply #1 on: May 14, 2010, 07:14:39 am »
Rhonda .....

You have every right to feel bummed out ..... and you certainly deserve the right to have the release of a mini-meltdown.  I hope you have someone with some professional expertise that is counseling you on how to channel your fears.  I'm not sure it is totally healthy to sweep it all under the rug.

I do admire you for being able to put it out of your mind and go on with life ..... and maybe that is the best way for you to deal with it until better treatment options are opened to you.

My thoughts and prayers remain with you!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: Seems my "buddy" grew...
« Reply #2 on: May 14, 2010, 07:40:20 am »
Rhonda, do not feel bad to feel upset over the MRI.      Whoever was so tactless has no idea  that your tumor is not of an easily treatable type and when given such news would be very upset and most people for longer than 5 minutes!      Sounds like you are coping well and that has to be not easy!             Feel free to vent here all you need.     We do understand!
                                                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

mk

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Re: Seems my "buddy" grew...
« Reply #3 on: May 14, 2010, 08:28:49 am »
A growth like this seems unbelievable (but then, nothing can be predicted with these finicky monsters). Do you have the CDs with the scans? Sometimes it is not the measurement itself that counts, but the shape and if it is visibly changing. I found that the only time that I had MRIs in two different machines, the measurements reported were different, but the images were actually quite similar. Can you compare the present images, with the ones you had before?

This week I also had a mini-meltdown over my most recent results and part of my "therapy" regime was to prepare a powerpoint presentation comparing all my previous scans.

More importantly, do you feel any significant change in symptoms? If there was a huge growth like the one reported, I would think that you should have a huge rush of symptoms.

I will guess that it was a guy that accused you of feeling sorry for yourself. I found out after countless arguments with my husband over such situations that guys think about this in a completely different way. After a lot of bitterness he explained to me that he gets really worried himself when he hears about my problems, and this is why he becomes withdrawn. Also, guys are problem solvers, so they don't see the point of complaining about something "just to get comfort", if it cannot be solved. They simply don't understand the "just to get comfort" concept. Of course this is not enough for women, as we need a shoulder to cry on. So vent off on the forum all you need.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

Mickey

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Re: Seems my "buddy" grew...
« Reply #4 on: May 14, 2010, 08:31:28 am »
Rhonda, your a very special person! In our AN cummunity there are many different problems and situations. We are here and have a better way to understand what your going thru. Please always fight and stay strong to the best of your abilities. In life anything is possible.  Best wishes fellow W+W, Mickey P.S.I`m fighting every day to stay healthy!

petgroomer

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Re: Seems my "buddy" grew...
« Reply #5 on: May 14, 2010, 10:08:45 am »
ahhh , :)  thanks...
what does it mean when they state "internal hemorrahaging within the lesion"...
That was also on the new MRI report.
I'm guessing bleeding of some sort, but is this normal?
After the MRI, he did not ask to see me again, only stated that he would book me for another MRI in October.
Good news on it tho is,, no apprearance of lymphadenopathy,, which I suspect is "no cancerous appearance."
Yiiipppeeee  ;D
JULY 2009 found 5.6 cm X 4 cm vagal schwan on the 10th cranial nerve and by MAY 2010 it grew to 7.1 cm X 4 cm X 4.1 cm  Nov 2010 it has grown another 10%... time for C.K.! :)
I love life but I'm finding it harder to do .. one millimetre at a time.
www.vagalschwannoma.com 
www.allinonepetcare.co

Cheryl R

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Re: Seems my "buddy" grew...
« Reply #6 on: May 14, 2010, 10:44:20 am »
Rhonda,    The bleeding may or may not be normal but must not be of concern. Not sure what to say about the lymphadenopathy.      Not sure if means of some lymph tissue possibilty and need to look up.                   
More interested with this post if you think you could report to some higher up how you were talked to?    Facilities are so big, here in the US anyway with customer service and how patients are treated.             That was a big thing when I was  working.        I am spending some time daily now with a older lady friend who had a new hip done last Thurs.    She is doing super but has no family here and I am her help for the time.   She is getting now skilled care for a few more days at where I used to work but her surgery was elsewhere.           So I have been seeing how all the staff has been so good to both of us.                The more I think about your event, the more it is upsetting that you could be talked to that way.              Anyway I would try to report it if possible as that should not have been done!                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

been there done that

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Re: Seems my "buddy" grew...
« Reply #7 on: May 22, 2010, 04:10:35 pm »
My tumor grew for ten or more years before I had my first MRI it was the size of pancake. My doctors got it out and all is well.. you will
be fine ,you caught it early. If you need a little surgery than go for it!! Hey have you ever shaved a cat ??   LOL pete