Re: update on my joe vs neuropathy

September 23, 2005

In a message dated 9/23/2005 6:17:03 PM Eastern Standard Time,

debbied31@... writes:

I am going to call the doc on monday and see if I cant get in sooner , (

Like next week) I feel like there is an Elephant sitting on my chest , I knooow

its stress related however I just want it OFF ( hmm the circus is coming to

town think I could ditch the elephant there?)

Deb....isn't that a sign of heart attack?? Do you need to go to ER for

YOURSELF?? Of course, it's stress-related, but.....so are heart attacks!!! If

it gets one tiny bit worse you can start taking regular aspirin just in

case....that saved my brother!!

The circus does Not want THAT elephant...LOL

Donelle

September 23, 2005

Deb,

This may sound like a strange question, but, what

exactly is the neurosurgeon supposed to do for him????

A neurologist to assess the neuropathy and prescribe

therapy makes sense, but neuropathy that is part of a

disease process or result of the oxaliplatin(and yes,

permanent neuropathy is a side effect of oxaliplatin,

pre-existing conditions make one more prone to this

effect)are not resolved by surgical means. Physical &

Occupational Therapists can improve function

dramatically even when the nerve loss does not return.

AND.....if you need to see your doc and are told you

can't get in for 3 months, that is NOT acceptable.

Call again & tell them it is URGENT and cannot wait.

Or, go to an ER or call your local social services

office & tell them you NEED to talk to someone about

your emotional state immediately. They have social

workers & psychologists on staff and available for

immediate assistance.

Good Luck!!

H

--- deb vamdembos debbied31@...> wrote:

> Well heck!!!!!!!!!!!!

> Joe had to have a nerve study done to see if the

> neuropathy was caused by the chemo or the syrinx

> that the found in his neck ,

> Results are in , the neuropathy is secondary to

> chemotherapy HOWEVER the radiculopathy (No friggin

> idea) is secondary to the syrinx ,

> So now they want him to go to a Neurosurgeon on

> Monday !

> Which of course he is hollering about , and may not

> even go to.

> ( He feels pretty good other than the neuropathy and

> electrical jolts down spine )

> When is enough

>

enough???????????????????????????????????????????????????????????

>

> Sorry I havent written much lately but I think Im on

> the edge of a breakdown , called the doc and cant

> get into see her for THREE MONTHS !!! geeeeeeeeez oh

> petes

>

> Mom is doing ok , still not better but the diarrhea

> is gone , still extremely weak , but she did get up

> at 330am and made potato

> salad!!!!!!!!!!!!!!!!!!!!!!!!

> Umm dont ask why I have NO IDEA LOL

> I told her no wonder she is tired she got up and

> cooked a meal in the middle of night

>

> Dani went to neurosurgeon on Monday it was a spinal

> Leak but it had stopped so body will reabsorb (

> Yay!!))

>

> God bless all

>

> Deb

>

> 33yrold husband Joe, was diagnosed with CC in Sept,

> resection on Sept 27th 2004

> found mets to the abdominal wall lining 3 lymph

> nodes involved

> open wound from infection until Jan 2005

> Ileostomy reversal Dec 7th 2004

> Chemo regiment begun Jan 2005

> 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005

> (Happy Valentines

> Calcium Magnesium added for the Tingles Feb 28 2005

> Ct Scan done March 23rd 2005 , 16 millimeter cyst

> like object on liver found

> April 1 2005 PET scan done awaiting results

> April 11 PET SCAN SHOWS

>

NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> May 9 Plateletts are low 75,000

>

> ---------------------------------

> Yahoo! for Good

> Click here to donate to the Hurricane Katrina

> relief effort.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

September 23, 2005

Deb,

This may sound like a strange question, but, what

exactly is the neurosurgeon supposed to do for him????

A neurologist to assess the neuropathy and prescribe

therapy makes sense, but neuropathy that is part of a

disease process or result of the oxaliplatin(and yes,

permanent neuropathy is a side effect of oxaliplatin,

pre-existing conditions make one more prone to this

effect)are not resolved by surgical means. Physical &

Occupational Therapists can improve function

dramatically even when the nerve loss does not return.

AND.....if you need to see your doc and are told you

can't get in for 3 months, that is NOT acceptable.

Call again & tell them it is URGENT and cannot wait.

Or, go to an ER or call your local social services

office & tell them you NEED to talk to someone about

your emotional state immediately. They have social

workers & psychologists on staff and available for

immediate assistance.

Good Luck!!

H

--- deb vamdembos debbied31@...> wrote:

> Well heck!!!!!!!!!!!!

> Joe had to have a nerve study done to see if the

> neuropathy was caused by the chemo or the syrinx

> that the found in his neck ,

> Results are in , the neuropathy is secondary to

> chemotherapy HOWEVER the radiculopathy (No friggin

> idea) is secondary to the syrinx ,

> So now they want him to go to a Neurosurgeon on

> Monday !

> Which of course he is hollering about , and may not

> even go to.

> ( He feels pretty good other than the neuropathy and

> electrical jolts down spine )

> When is enough

>

enough???????????????????????????????????????????????????????????

>

> Sorry I havent written much lately but I think Im on

> the edge of a breakdown , called the doc and cant

> get into see her for THREE MONTHS !!! geeeeeeeeez oh

> petes

>

> Mom is doing ok , still not better but the diarrhea

> is gone , still extremely weak , but she did get up

> at 330am and made potato

> salad!!!!!!!!!!!!!!!!!!!!!!!!

> Umm dont ask why I have NO IDEA LOL

> I told her no wonder she is tired she got up and

> cooked a meal in the middle of night

>

> Dani went to neurosurgeon on Monday it was a spinal

> Leak but it had stopped so body will reabsorb (

> Yay!!))

>

> God bless all

>

> Deb

>

> 33yrold husband Joe, was diagnosed with CC in Sept,

> resection on Sept 27th 2004

> found mets to the abdominal wall lining 3 lymph

> nodes involved

> open wound from infection until Jan 2005

> Ileostomy reversal Dec 7th 2004

> Chemo regiment begun Jan 2005

> 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005

> (Happy Valentines

> Calcium Magnesium added for the Tingles Feb 28 2005

> Ct Scan done March 23rd 2005 , 16 millimeter cyst

> like object on liver found

> April 1 2005 PET scan done awaiting results

> April 11 PET SCAN SHOWS

>

NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> May 9 Plateletts are low 75,000

>

> ---------------------------------

> Yahoo! for Good

> Click here to donate to the Hurricane Katrina

> relief effort.

>

> [Non-text portions of this message have been

> removed]

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

September 23, 2005

Oh, Deb, I am so sorry to hear your Joe is having more medical

problems. Maybe the neurosurgeon will just say, it is nothing to

operate on, just have some physical therapy.

When I had a lump, the Ob-Gyn examined me. Then said get a mammogram

to make sure. The doc bought the mammogram machine and needed to use

it a lot to make the monthly payments. That sounds cynical, but it

is the truth. Yes, the mammogram showed something there, but you are

too dense to see it, better get a sonogram. Go to the hospital and

get the sonogram. Radiologist wrote a letter to my doc and said yes

there is something there. Photo shows something. Recommend to see

the surgeon. The surgeon felt me for less than 3 seconds and said it

is just a cyst, no problem, it's genetic. So there wasn't any

surgery at all. But the bureaucracy or red tape was extensive and

the mind game they were playing with me, thinking that I had a

cancer, as well as the medical bills, almost made me fall off the

deep end.

The funny thing was that the surgeon remembered me from a

few years earlier. He said didn't you have a gall bladder problem?

What did you do about that? Didn't he read the extensive papers I

filled out in the waiting room while I was waiting to see him? Every

medical condition I ever had (and all medical problems of ancestors)

and all my surgeries listed by year? I was really embarrassed that I

did not remember him. He had moved his office. I had to admit to him

that I went to another city and had the operation over there. Same

day surgery, laparoscopic gall bladder removal. He said oh, ok. I

guess I cheated him out of that surgery, so he was curious. But I

had to do it. The surgery in the other city was half the cost of

what the hospital here would have charged me.

Sorry this is such a long post. Had to get that off my chest.

Praying for you, Joe, Mom and Dani. God bless all.

~Deb from Kansas

> Well heck!!!!!!!!!!!!

> Joe had to have a nerve study done to see if the neuropathy was

caused by the chemo or the syrinx that the found in his neck ,

> Results are in , the neuropathy is secondary to chemotherapy

HOWEVER the radiculopathy (No friggin idea) is secondary to the

syrinx ,

> So now they want him to go to a Neurosurgeon on Monday !

> Which of course he is hollering about , and may not even go to.

> ( He feels pretty good other than the neuropathy and electrical

jolts down spine )

> When is enough

enough???????????????????????????????????????????????????????????

>

> Sorry I havent written much lately but I think Im on the edge of a

breakdown , called the doc and cant get into see her for THREE

MONTHS !!! geeeeeeeeez oh petes

>

> Mom is doing ok , still not better but the diarrhea is gone ,

still extremely weak , but she did get up at 330am and made potato

salad!!!!!!!!!!!!!!!!!!!!!!!!

> Umm dont ask why I have NO IDEA LOL

> I told her no wonder she is tired she got up and cooked a meal in

the middle of night

>

> Dani went to neurosurgeon on Monday it was a spinal Leak but it

had stopped so body will reabsorb ( Yay!!))

>

> God bless all

>

> Deb

>

> 33yrold husband Joe, was diagnosed with CC in Sept,

> resection on Sept 27th 2004

> found mets to the abdominal wall lining 3 lymph nodes involved

> open wound from infection until Jan 2005

> Ileostomy reversal Dec 7th 2004

> Chemo regiment begun Jan 2005

> 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy

Valentines

> Calcium Magnesium added for the Tingles Feb 28 2005

> Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on

liver found

> April 1 2005 PET scan done awaiting results

> April 11 PET SCAN SHOWS

NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> May 9 Plateletts are low 75,000

September 23, 2005