Author Topic: Kristine and her mother Erlina  (Read 6103 times)

MDemisay

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Kristine and her mother Erlina
« on: October 24, 2012, 11:32:23 am »
To all members of this special group called NF2,

Erlina and her daughter Kristine have asked me to update you on Kristine progress with Dr. Slattery at HEI unfortunately he is of the opinion that another surgery will be needed and will be performed on November 29, 2012. There is no other option. He has said that she will lose hearing in the affected. Slattery says radiation will trigger growth of more tumors.

Can anyone help here? I feel at this point that I am beyond my league and am not qualified enough to render an opinion on NF2 here (as another person with NF2 is).

I have a rather simple AN  subtotal extraction in 2004 and a regrowth in 2011 followed in June 2012 by a hopefully successful GK radiation.

I am prayerful though, and with the help of those here both mother and daughter will be encouraged.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Raven

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Re: Kristine and her mother Erlina
« Reply #1 on: October 25, 2012, 06:50:40 am »
Slattery says radiation will trigger growth of more tumors.

Yikes.........Never heard of that, so I'm not much help, however, I'm getting my annual MRI next week and going to see my Dr. in two weeks...............I'm definetley asking him about this as my only option on my remaining AN is GK

John
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

producer

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Re: Kristine and her mother Erlina
« Reply #2 on: October 27, 2012, 05:11:25 am »
To all members of this special group called NF2,
Slattery says radiation will trigger growth of more tumors.



when doctors throw quotes like the  above it makes me upset because it basically forces the patient to follow their recommended treatment! I have recently been advised by Professor Gareth Evans who is probably the most respected and experienced NF2 geneticist in the world that risk of malignancy with radiation on a benign NF2 patient tumor is at about 1% or  2% at 20 years!  That means even if you are in the 1-2 percent  the risk is really after 20 years of the treatment.

Now, ofcourse thats still a risk to be considered, i agree...BUT to just throw a comment like the above to the patient, well, you can make your own mind up..


please, be informed before making any treatment decision..

chris
Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

Susan A

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Re: Kristine and her mother Erlina
« Reply #3 on: October 27, 2012, 06:45:33 am »
There is a lot of information about NF2 treatment on this site: http://nf2is.org . Here's the page about radiation treatment: http://nf2is.org/radiosurgery.php It's my understanding that in some cases radiation is a good treatment and in others it's not, depending on the size and location of the tumor.

Quote
"If a tumor is in a life threatening location or is over a certain size, preliminary surgical de-bulking (surgical removal of part of a tumor) followed by radiation is sometimes a course of treatment. Since there is no guarantee that radiation will stop a tumor from growing, a life threatening tumor can be partially removed to remove the immediate threat. The radiation oncologist considers the tumor size in determining the dose of radiation necessary to treat a tumor. A tumor over a certain size may require a radiation dosage that would be too dangerous for the patient."
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

Cheryl R

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Re: Kristine and her mother Erlina
« Reply #4 on: October 27, 2012, 07:42:35 am »
Chris, I did not take Dr Slattery's talk of more tumors being malignant ones but more NF2 ones.     Dr Slattery has been at the AN symposium yearly and does the NF2 sessions.    I have talked to him personally plus the NF2 group is usually very small at the symposium so we do get to talk about any questions we have.
My neurotologist is not for radiation for NF2ers for several reasons.         My take on Kristinas case is that she might be better off in the long run with surgery due to some symptoms she has now being less post op.        Dr Slattery is the one who would know more about this.                  NF2 tumors can be different than regular AN's with the nerve going thru them and the regular AN on top of a nerve.               Each NF2 case is more individual and needs to be trreated with what works best for that person.                                  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

producer

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Re: Kristine and her mother Erlina
« Reply #5 on: October 31, 2012, 09:02:14 am »
Hello Cheryl,

The primary risk (although very small) with radiating  benign tumours is the malignancy factor.  I have not come across any literature to suggest that secondary or more benign tumours have arisen as a result of radiation. Id be very interested to examine any such literature, please share if you have any.

cheers


chris

Mosaic NF2  diagnosed march 2011.

9mm x 6mm x 6mm left VS

Cyberknife 3 day treatment completed May 2nd.

nftwoed

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Re: Kristine and her mother Erlina
« Reply #6 on: December 21, 2012, 08:36:09 pm »
Hi;

  "Slattery says radiation will trigger growth of more tumors."  > Not focused beam as GK, CK, PB, FSR. I disagree with the Dr. Of course, HEI is a surgical facility and it's Dr's mindsets are biased against radiation. I find Dr's statement appalling!


 
To all members of this special group called NF2,

Erlina and her daughter Kristine have asked me to update you on Kristine progress with Dr. Slattery at HEI unfortunately he is of the opinion that another surgery will be needed and will be performed on November 29, 2012. There is no other option. He has said that she will lose hearing in the affected. Slattery says radiation will trigger growth of more tumors.

Can anyone help here? I feel at this point that I am beyond my league and am not qualified enough to render an opinion on NF2 here (as another person with NF2 is).

I have a rather simple AN  subtotal extraction in 2004 and a regrowth in 2011 followed in June 2012 by a hopefully successful GK radiation.

I am prayerful though, and with the help of those here both mother and daughter will be encouraged.

Mike

MDemisay

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Re: Kristine and her mother Erlina
« Reply #7 on: January 11, 2013, 12:12:16 pm »
To Everybody who frequents this board,

Erlina has sent me a message yesterday about her daughter Kristine who has NF2 and about her positive experience at HEI with Dr.Slattery et al. If you want to find out what she wrote to me, please visit the AN Community under " a message of Hope and to all the Prayer Warriors from Erlina".

Prepare to be amazed and uplifted. Hope you all had a Happy Holiday and a Happy New Year!

 Considering some of the things we've been experiencing on the East Coast, it was good news from the West Coast! Do you agree?

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: Kristine and her mother Erlina
« Reply #8 on: January 11, 2013, 12:16:46 pm »
To Everybody who frequents this board,

Erlina has sent me a message yesterday about her daughter Kristine who has NF2 and about her positive experience at HEI with Dr.Slattery et al. If you want to find out what she wrote to me, please visit the AN Community under " a message of Hope and to all the Prayer Warriors from Erlina".

Prepare to be amazed and uplifted. Hope you all had a Happy Holiday and a Happy New Year!

 Considering some of the things we've been experiencing on the East Coast, it was good news from the West Coast! Do you agree?

Indeed!

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.

 


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