Re: Re: Wife's 2nd Surgery

December 7, 2000

That is wonderful to hear about your wife and hope her facial function resumes

too. thx for sharing.

> My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in

> right ear. Tumor was cut in half but she lost hearing. Back in October, MRI

> found tumor had re-grown aggressively. It was back to 5cm. Surgery November

> 29 successfully removed entire tumor. Facial nerve was cut. Fortunately,

> Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out

> fascial nerve at root and reattach.

>

> Very happy to have entire tumor removed. Dr's say it will take 6-9 months to

> regain use of right side. Will have gold weight placed in eye to help it

> close. Using Real Tears and Aqua Lub to keep eye moist.

>

> It was difficult for her to go through two surgeries in 5 months. She does

> not regret giving debulking a try. We know it has worked for some people.

>

> Although I don't get to reply as often as I would like, I read all relevant

> postings. The Crew is an invaluable asset as we go down this road. It feels

> like yesterday (diagnosis 12/97) me and my wife were just learning about all

> this. Now we are starting to feel like veterans. It is important for

> everyone to keep sharing their stories so that new comers can educated and to

> keep adding to the knowledge base so that better treatments can be found and

> shared.

>

> Ceretti

>

December 7, 2000

That is wonderful to hear about your wife and hope her facial function resumes

too. thx for sharing.

> My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in

> right ear. Tumor was cut in half but she lost hearing. Back in October, MRI

> found tumor had re-grown aggressively. It was back to 5cm. Surgery November

> 29 successfully removed entire tumor. Facial nerve was cut. Fortunately,

> Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out

> fascial nerve at root and reattach.

>

> Very happy to have entire tumor removed. Dr's say it will take 6-9 months to

> regain use of right side. Will have gold weight placed in eye to help it

> close. Using Real Tears and Aqua Lub to keep eye moist.

>

> It was difficult for her to go through two surgeries in 5 months. She does

> not regret giving debulking a try. We know it has worked for some people.

>

> Although I don't get to reply as often as I would like, I read all relevant

> postings. The Crew is an invaluable asset as we go down this road. It feels

> like yesterday (diagnosis 12/97) me and my wife were just learning about all

> this. Now we are starting to feel like veterans. It is important for

> everyone to keep sharing their stories so that new comers can educated and to

> keep adding to the knowledge base so that better treatments can be found and

> shared.

>

> Ceretti

>

December 7, 2000

That is wonderful to hear about your wife and hope her facial function resumes

too. thx for sharing.

> My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in

> right ear. Tumor was cut in half but she lost hearing. Back in October, MRI

> found tumor had re-grown aggressively. It was back to 5cm. Surgery November

> 29 successfully removed entire tumor. Facial nerve was cut. Fortunately,

> Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out

> fascial nerve at root and reattach.

>

> Very happy to have entire tumor removed. Dr's say it will take 6-9 months to

> regain use of right side. Will have gold weight placed in eye to help it

> close. Using Real Tears and Aqua Lub to keep eye moist.

>

> It was difficult for her to go through two surgeries in 5 months. She does

> not regret giving debulking a try. We know it has worked for some people.

>

> Although I don't get to reply as often as I would like, I read all relevant

> postings. The Crew is an invaluable asset as we go down this road. It feels

> like yesterday (diagnosis 12/97) me and my wife were just learning about all

> this. Now we are starting to feel like veterans. It is important for

> everyone to keep sharing their stories so that new comers can educated and to

> keep adding to the knowledge base so that better treatments can be found and

> shared.

>

> Ceretti

>

December 7, 2000

Prayers for her . Sounds as though both of you have high spirits!

Carol, land

Ceret1@... wrote:

Crew-

My wife anne had surgery

in June in an attempt to debulk 4.5 cm tumor in

December 7, 2000

Prayers for her . Sounds as though both of you have high spirits!

Carol, land

Ceret1@... wrote:

Crew-

My wife anne had surgery

in June in an attempt to debulk 4.5 cm tumor in

December 7, 2000

Prayers for her . Sounds as though both of you have high spirits!

Carol, land

Ceret1@... wrote:

Crew-

My wife anne had surgery

in June in an attempt to debulk 4.5 cm tumor in

December 7, 2000

please send us an address were we can send cards to her to let her know we are still think if her

December 7, 2000

Just to say I had a debulking done, and my tumor grew very agressively within a few months after that. Marie

Re: Wife's 2nd SurgeryCrew- My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in right ear. Tumor was cut in half but she lost hearing. Back in October, MRI found tumor had re-grown aggressively. It was back to 5cm. Surgery November 29 successfully removed entire tumor. Facial nerve was cut. Fortunately, Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out fascial nerve at root and reattach. Very happy to have entire tumor removed. Dr's say it will take 6-9 months to regain use of right side. Will have gold weight placed in eye to help it close. Using Real Tears and Aqua Lub to keep eye moist. It was difficult for her to go through two surgeries in 5 months. She does not regret giving debulking a try. We know it has worked for some people. Although I don't get to reply as often as I would like, I read all relevant postings. The Crew is an invaluable asset as we go down this road. It feels like yesterday (diagnosis 12/97) me and my wife were just learning about all this. Now we are starting to feel like veterans. It is important for everyone to keep sharing their stories so that new comers can educated and to keep adding to the knowledge base so that better treatments can be found and shared. Ceretti

December 7, 2000

You know I think it is interesting that they re attached Anns facial nerve; I was t old my nerve was " preserved " , my I had total paralysis; it wasn't til later when I asked that Brakman admitted it would not come back completely; I am now 8 months post op, and I would say I have maybe 25% back at most. Are they hopeful Ann will get all her movement back? Marie

Re: Wife's 2nd SurgeryCrew- My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in right ear. Tumor was cut in half but she lost hearing. Back in October, MRI found tumor had re-grown aggressively. It was back to 5cm. Surgery November 29 successfully removed entire tumor. Facial nerve was cut. Fortunately, Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out fascial nerve at root and reattach. Very happy to have entire tumor removed. Dr's say it will take 6-9 months to regain use of right side. Will have gold weight placed in eye to help it close. Using Real Tears and Aqua Lub to keep eye moist. It was difficult for her to go through two surgeries in 5 months. She does not regret giving debulking a try. We know it has worked for some people. Although I don't get to reply as often as I would like, I read all relevant postings. The Crew is an invaluable asset as we go down this road. It feels like yesterday (diagnosis 12/97) me and my wife were just learning about all this. Now we are starting to feel like veterans. It is important for everyone to keep sharing their stories so that new comers can educated and to keep adding to the knowledge base so that better treatments can be found and shared. Ceretti

December 7, 2000

You know I think it is interesting that they re attached Anns facial nerve; I was t old my nerve was " preserved " , my I had total paralysis; it wasn't til later when I asked that Brakman admitted it would not come back completely; I am now 8 months post op, and I would say I have maybe 25% back at most. Are they hopeful Ann will get all her movement back? Marie

Re: Wife's 2nd SurgeryCrew- My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in right ear. Tumor was cut in half but she lost hearing. Back in October, MRI found tumor had re-grown aggressively. It was back to 5cm. Surgery November 29 successfully removed entire tumor. Facial nerve was cut. Fortunately, Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out fascial nerve at root and reattach. Very happy to have entire tumor removed. Dr's say it will take 6-9 months to regain use of right side. Will have gold weight placed in eye to help it close. Using Real Tears and Aqua Lub to keep eye moist. It was difficult for her to go through two surgeries in 5 months. She does not regret giving debulking a try. We know it has worked for some people. Although I don't get to reply as often as I would like, I read all relevant postings. The Crew is an invaluable asset as we go down this road. It feels like yesterday (diagnosis 12/97) me and my wife were just learning about all this. Now we are starting to feel like veterans. It is important for everyone to keep sharing their stories so that new comers can educated and to keep adding to the knowledge base so that better treatments can be found and shared. Ceretti

December 7, 2000

You know I think it is interesting that they re attached Anns facial nerve; I was t old my nerve was " preserved " , my I had total paralysis; it wasn't til later when I asked that Brakman admitted it would not come back completely; I am now 8 months post op, and I would say I have maybe 25% back at most. Are they hopeful Ann will get all her movement back? Marie

Re: Wife's 2nd SurgeryCrew- My wife anne had surgery in June in an attempt to debulk 4.5 cm tumor in right ear. Tumor was cut in half but she lost hearing. Back in October, MRI found tumor had re-grown aggressively. It was back to 5cm. Surgery November 29 successfully removed entire tumor. Facial nerve was cut. Fortunately, Dr. Elowitz and Dr. Feghali of Beth Israel (NYC) were able to tease out fascial nerve at root and reattach. Very happy to have entire tumor removed. Dr's say it will take 6-9 months to regain use of right side. Will have gold weight placed in eye to help it close. Using Real Tears and Aqua Lub to keep eye moist. It was difficult for her to go through two surgeries in 5 months. She does not regret giving debulking a try. We know it has worked for some people. Although I don't get to reply as often as I would like, I read all relevant postings. The Crew is an invaluable asset as we go down this road. It feels like yesterday (diagnosis 12/97) me and my wife were just learning about all this. Now we are starting to feel like veterans. It is important for everyone to keep sharing their stories so that new comers can educated and to keep adding to the knowledge base so that better treatments can be found and shared. Ceretti

December 7, 2000

,

So sorry to hear of your family's trials with NF2 which have been unfairly

intense since diagnosis. Wow, you all must be still reeling from the

surgeries and the effects. Sounds like these last doctors did very well on

anne's face but of course, the side effects of the surgery are very hard

to live with. My daughter Anne had two abdominal surgeries in 6 months (you

may have read) and it has been hard to rebound. In fact, her incision has

opened in six places---a problem we have dealt with for 1 year. It seems

that the surgeons are remiss in telling the full story of side effects before

the surgeries. Yes, we are helpful to each other by writing our accounts,

our recoveries, etc. Hopefully, we will be seeing a treatment or cure soon.

The very best to you and anne. Please know you are in my prayers. Vicki

December 7, 2000