newly diagnosed

[Guest guest]

In a message dated 2/8/2008 6:30:28 PM Eastern Standard Time, randolrn@... writes:

Newly Diagnosed

Suzanne,

I am glad you are feeling better after joining this list. I have found that

joining this list and the ACOR one has helped me a lot.

My MD first suspected I may have CLL when I was diagnosed with early stage

endometrial/uterine cancer. While doing routine blood work for my pending

hysterectomy, my white count was a bit high and I had some unusual

lymphocytes. My hysterectomy went well, and we watched my blood work and one

yr after my surgery, I was dx. with atypical CLL.

Make sure your CLL specialist weighs in on whether you should proceed with a

hysterectomy sooner vs. later. Your CLL makes your immune system function

less well and you may want the surgery while you are still in the early

stages of CLL. I too had some abnormal pap smears but they went back to

normal, but later I developed the endometrial CA. There is no way to know if

those abnormal paps were related to my later developing endometrial CA. But,

you and your docs have to weigh and consider all the particulars of your

case. My endometrial CA was caught very early and I had a lot of dysplasia

in my cells along with the start of CA. It has been 3.5 yrs since my

hysterectomy and I had a CT scan last mo. that showed no signs of CA or of

any internal lymph gland enlarged and my spleen is normal in size. I am

lucky right now on all counts.

You have made so many good moves in researching for a good ONC., trying to

be informed. We are all here to support you. I see an ONC at Sloan and was

pleased with the consults there, but now see someone equally good closer to

home, and just go to NY once per yr. Stay well and reach out when you need

us.

Randolph

DX 11/05 atypical CLL

W & W

[Guest guest]

Hi and welcome! I'm happy to hear that you've been diagnosed with flatback -

not that I'm happy that you have it, but sometimes just the act of figuring out

what has gone wrong is very challenging, as many doctors seemingly don't

recognize the issue of flatback and may just tell you how beautiful and solid

your fusion looks! When was your original surgery?

Who diagnosed you, and have they suggested what might be done to help fix it?

If you've done that already, have you considered getting another opinion to see

if there is a vastly different approach taken by another surgeon?

Hang in there! It can be tough to wrap your head around sometimes, but you've

found a great group of people who understand!

>

> I don't have much to say right now due to the severe depression I'm going

through due to just being diagnosed 8/3/10. I'm scared my life as I once new it

is gone because of a frigging harrington rod. I'll be 43 in September and feel

my life is over already. Maybe as I find strength to read this support group

more, I'll find acceptance and hope.

>

[Guest guest]

CLL is not guaranteed to be similar among relatives. It can

differ. there is a phenomenon called anticipation which

suggests that it is worse in succeeding generations. But

this is disputed.

In a message dated 10/07/2011 04:12:56 GMT Daylight Time,

lsquittman@... writes:

/message/15506

[Guest guest]

Dear All,

In response to Dr. Hamblin, I have CLL and was diagnosed at

age 60. My son was diagnosed with Mantle cell when he was

age 45. I think that these are quite related, but not sure.

He is among the fortunate ones, who after treatment with

surgery, chemo and radiation, has been free of mantle cell

for 8 years. And as his Mom, I am extremely happy.

AGC

Dr. Hamblin wrote:

/message/15507

[Guest guest]

To say that every CLL patient is different is probably a

truism, and an oversimplification, but it is true. The

concept of 'elderly', no treatment, dying of something else,

is quite old, and misleading, but still believed. Get all

of the tests you can and read, read, read. You are well on

your way since you've been offered these important tests.

Even tho these two links are very old, in cll terms, 2004/5

they for the most part are as valid today as they were then

(if not more so). With a few tweaks, the 'new science' has

done very little to change the way patients are approached

today.

http://bloodjournal.hematologylibrary.org/content/103/4/1202.long

or http://tinyurl.com/3d7l32x

(this is the Mayo article from Blood, that deals with

prognosis at diagnosis, still valid.) one quote from this

article:

" Although this categorization no longer distinguishes these

diseases as indolent or aggressive, the low-grade B-cell

disorders are still evaluated along these lines. These

disorders are often considered chronic diseases of the

elderly, and patients are thought likely to die of unrelated

causes. These assumptions are incorrect and, to a certain

extent, have hampered progress in this field. "

This one from Venkat's site (there are other sites

such as CLL canada where much information is archived,

as well as this list):

http://clltopics.org/DC/DawnofaNewEra.htm

Just think this article should be read by all cll patients.

if you have before, read it again. This 'new era' is

definitely here now. Newly diagnosed patients are more

fortunate now since the testing they refer to has been made

more widely available, less costly, faster, and more

accurate. More centers are capable of doing these tests

than they were back in 2004. Patients diagnosed prior to

that 'new era' were not afforded these tests, treatments

were more harsh, and fewer choices were available to them.

Wishing you all the best,

Beth Fillman

[Guest guest]

An excellent and balanced overview by Dr. Furman on markers

can be found here:

http://asheducationbook.hematologylibrary.org/cgi/content/full/2010/1/77

or

http://tinyurl.com/6eh3gts

~chris

[Guest guest]

Hi -

* Go to http://www.cllinfogroup.org and download an entire

booklet called " UNDERSTANDING CLL/SLL "

http://tinyurl.com/3l9kevf

This explains much of the CLL basics. You can read it

online, download it or order it (90 plus pages). This

excellent resource is co-sponsered by the CLL Information

Group (CIG) which also is responsible for this wonderful

discussion site tour on now. Thank you for

these invaluable CIG efforts.

1) Other resources for some basics about CLL are

http://www.clltopics.org and

http://cllcanada.ca/2010/index.htm

2) find a CLL expert (specialist) doc that will work with

you, your local PCP & your local hematologist/oncologist.

See the following online resources to help find a CLL expert

doctor close to where you live. Go see a CLL specialist asap

http://www.cll.acor.org/DRdoctors

http://www.cllfoundation.org/drdirectory

3) find a local hematologist/oncologist (H/O) willing to

work with your CLL expert doc - your primary care physician

(PCP) can probably help with this

4) have you had the following blood tests - FISH analysis,

Flow Cytometry, IvGH analysis, ZAP-70. Have these blood

tests done (I had to virtually force a local H/O to order

these tests -when done they confirmed I had CLL. Then I

quickly found a CLL specialist and a NEW local hem/onc). Get

copies of all the tests and go to

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm to

learn what these tests mean.

5) organize your team with 1, 2, 3 above - then be pro-

active and take good care of yourself

Here's more resource info -

CLL Topics is at

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm and the

article updates are at http://updates.clltopics.org/

Note: if you register for the updates@ clltopics.org you can

then read and post to the comments section that's after each

new article. Again, it's a lot of interesting information.

Some of the notable posters here are Dr. Hamblin, from

CLL Canada, and a few doctors (general practice) who

themselves have CLL.

Dwyer started the excellent

http://cllcanada.ca/2010/index.htm -again more

scientifically/medically oriented. is one of the best

researchers and nicest people I have encountered on the

lists. This is not a discussion group - it's a source of up

to date information about all things related to CLL. Chris

is also is very active on this discussion group

your now on.

I was Dx with CLL 2 years ago. For me being a pro-active

type A person - learning all I could about CLL helped me to

understand, accept and deal with my situation. Knowing what

to watch out for and how to take care of my CLL put my CLL

in perspective. I'm in watch & wait (w/w) mode but with CLL

one needs to be diligent and have frequent blood testing to

monitor the disease. I see my local hem/onc every 2 months

and my CLL specialist @ UCSD every 3-6 months depending on

how I'm doing.

It really helps me to make every possible effort to stay

mentally, emotionally & spiritually fit. Enjoy life, spend

time with family and loved ones. And good friends are

priceless.

Warm regards - Patti

[Guest guest]

Hi - here are some additional resources.

(of the CLL Canada website) recently posted some information/resources

helpful for a person newly diagnosed with CLL. I've copy/pasted his

suggestions/comments below.

**********************************************

General CLL guides can be found here. They are listed in

order of complexity and jargon...

http://www.cancer.net/patient/Cancer+Types/Leukemia+-+Chronic+Lymphocytic+-+CLL

or http://tinyurl.com/2chur62

http://emedicine.medscape.com/article/199313-overview

http://www.mhprofessional.com/content/media/kaus_094%20%281431-1482%29.fm_.pdf

or http://tinyurl.com/3b65qbj

http://www.clinicaloptions.com/inPractice/Oncology/Hematologic_Malignancies/ch40\

_Heme-CLL.aspx

or http://tinyurl.com/4xfcer9 (free registration required)

CLL is a highly complex disease and nearly every patient in

some ways is different.

The prime prognostic indicators are IgHV gene mutation, CD38

percent, staging and lymphocyte doubling time. (LDT)

There are some others that are used and relevant for

clinical trials and are either not available on a clinical

level or have limited relevance...IgHV gene mutation is

often not available outside of clinical trials in most

hospitals.

***************************************************

Warm regards - Patti K

[Guest guest]

Thanks to all of you for your excellent posts and

suggestions. What a great group for the type of help and

support I need. Ct scan results showed numerous small lymphs

in the lower back, under arms and stomach. Liver and spleen

were clear but I showed opacities in my right lobe. The

doctor never mentioned this when we spoke today so I first

saw this at home reading over ther reports. (I am 67, have

11q deletion, positive for zap-70, no IgVH mutation) I am in

stage 2. Was wondering how long I could possibly stay in

this stage. Do people stay like this for years? My doc said

overall life expectancy for stage 2 without treatment has a

median of 5 to 10 years BUT many of those people probably

dont have my FISH results.

A

ny information appreciated.

My prayers are for all of you.

Hipgram

Updating original message:

/message/15506

[Guest guest]

It was nine years before I needed chemo. Carolyn Swift

Hipgram wrote:

/message/15574

[Guest guest]

, I don't think most Docs would give you a time frame.

But I suspect this is not exactly what he said as he would

have had to also tell you a life expectancy after having

received treatment. I think it is best to ignore any written

time frames as most would not apply to any individual. You

may have different prognostics than your mother, but we also

have different drugs in the pipeline now.

In response to:

/message/15574

[Guest guest]

- Dave is right. Every doctor who I've heard or read

who addresses the question of statistics has said that they

are just that. They apply to thousands of patients over

time, not to any one patient. My numbers were so bad at

diagnosis that I was told that I would need a kidney

transplant (my CLL affects my kidneys). The doctor who told

me that is fabulous and set up such a good team for me that

she proved herself to be wrong and she was looking at my

specific case. I still have both of the original ones. You

could go forever and never need treatment. Who knows?

Pat

Dave wrote:

/message/15580

[Guest guest]

Earlier this year I had a MRI which detected Spinal Epidural Lipatomosis, a

build up of fat in an allergy to some chemicals used, this build up caused

Spinal Stenosis adding that to the Tarlov Cysts, 3 damaged disks and

Osteoporosis and that's just my lower back so they bundled me off to a

neurosurgeon who stated. Whilst looking down his nose to me that there was

nothing he could do for me and had no advice to help me.

Then when I saw the Pain Management clinic, he stated I had SS, nothing can be

done about it as the type I have affects the entire spine and has been that way

since birth, no way could they widen it all then with all the other problems...

But why was this not diagnosed earlier? I know you don't have the answers. But

I'm only 52 and am in a chair all the time now except when pain levels reach 7+

then I can't move off the couch, can't even concentrate to join a conversation

online. Hate staying in bed I try to keep that for night time to keep a routine

or else I think I'd loose total track of time.

I'm not chasing pity just thought I'd share a bit more of my story, as you have.

I'm glad there is an option for you when the time is right but do get other

opinions so your sure of what's happening. Our body is so important, we truly

should worship it.

Cheers to all hope you have a lovely day

Adrienne - WestAustralia

>

> My neurosurgeons words were exactly the same. " You'll know when its time. "

(I live in Fort Lauderdale). Sometimes the fact that they don't want to jump in

and immediately operate is a good sign. I managed to go another year and a half

with pain management shots. Then when I couldn't move out of bed even to go to

the bathroom it was time. I am 73 years old this was done when I was 70. If

you are in pretty good shape without a lot of extra weight on you I would say

that you shouldn't have any problems. It also depends what they are going to

do. My doctor only wnet in and removed the bone spurs. After the back surgery,

I fell and broke my foot and then had my hip replaced all within a year and a

half.

>

> I am now almost able to do anything. I go to the gym, I stand in the security

line at the airport and then face the extra security with the dumb hip. I swim,

I dance. I do not pick up heavy things. I go to the gym.

>

> Try the pain shots under twilight anesthesia. If not get another opinion or

two and then if you like go for it. If I can be of any further help let me

know. lie

>

[Guest guest]

Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of suscide, but guess I am too big a

coward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God Bless you!!From: Cathie <ksiera45@...>Spinal Stenosis Treatment Sent: Wednesday, September 28, 2011 10:23 AMSubject: RE: newly diagnosed

Ann, I am like you surgery is not on my list

of things … I feel once they mess with my spine I will forever be worse.

Do you work? So far I am trying not to let this pain rule me … I go out

... and then suffer when I get home … I wish I had something positive to

say to you … hope you keep in touch … I am wishing there were local

groups for support just to talk so people who have the same thing that can lend

an ear and hear there stories too. Cathie

From:

Spinal Stenosis Treatment [mailto:Spinal Stenosis Treatment ] On Behalf Of Ann Sisley

Sent: Tuesday, September 27, 2011

7:24 AM

To:

Spinal Stenosis Treatment

Subject: newly

diagnosed

I've been having low back pain for several years, but since

getting stuck in an airport security line for over 90 minutes in May -

standing, shuffling one step at a time - with no support, the pain has really exacerbated.

MRI's in past years showed disk space narrowing, but the most recent MRI

confirmed the spinal stenosis. The neurosurgeon's words were simple.

"You'll know when it's time." That scares me to death. But I see how

this pain has changed my life. One day, in a fit of self-pity, I sat down

and wrote the things I can no longer do. It seems the list gets longer

daily. I realize that if I do minimal standing, and I do mean minimal, I can

manage the pain. Surgery is the last thing on my list. I have a medical

background and this time it isn't a good thing. I know too much about what

might/could/maybe result. I have heard horror stories, but I've also heard

success stories.

I just want my old life back, when I could do things without

thinking ahead of what might be a pain trigger. I miss traveling. But the icing

on the cake happened over the weekend. I wanted a hot fudge sundae at the Dairy

Queen. (small place with no drive through). There were 10 people in line,

one clerk working. I knew I couldn't stand in line to wait for a hot fudge fix.

But that still isn't enough to make me agree to the surgery.

Anyone in the group have some positive experiences with

surgery?

Ann

[Guest guest]

For those of you who say you will never have surgery, I say you are not in

enough pain. For those of us who couldn't bear another day of excruciating pain,

surgery is the only option. I had surgery two years ago and I am much better. Am

I as good as new? No. Am I better off? Yes. I was able to have the " simple "

laminectomy and not fusion. My friend had the fusion and was in a brace for

about 12 weeks. She is doing great. The brace is off and she can walk!

I wish you the best, Ann. Keep your thoughts positive!

[Guest guest]

Surgery isn't always an option, with all that is wrong with my spine no surgeon

will even touch my back even tho I'm in excruciating pain all the time...

Attempting surgery most likely result in a CSF leak due to my TC's, THen my life

wouldn't be worth living. Tho when they first offered I know my pain levels

were not high enough then, they are now, and yet no one will touch me now.....

Best wishes to all

Adrienne

>

> For those of you who say you will never have surgery, I say you are not in

enough pain. For those of us who couldn't bear another day of excruciating pain,

surgery is the only option. I had surgery two years ago and I am much better. Am

I as good as new? No. Am I better off? Yes. I was able to have the " simple "

laminectomy and not fusion. My friend had the fusion and was in a brace for

about 12 weeks. She is doing great. The brace is off and she can walk!

>

> I wish you the best, Ann. Keep your thoughts positive!

>

>

[Guest guest]

Adrienne, I apologize. I only took into consideration what it took for me to consent to surgery. It never dawned on me that it might not have been an option for me. I wish I had an answer for you and the pain you are experiencing. My best to you. On Sep 30, 2011, at 6:21 PM, Adrienne wrote:

Surgery isn't always an option, with all that is wrong with my spine no surgeon will even touch my back even tho I'm in excruciating pain all the time...

Attempting surgery most likely result in a CSF leak due to my TC's, THen my life wouldn't be worth living. Tho when they first offered I know my pain levels were not high enough then, they are now, and yet no one will touch me now.....

Best wishes to all

Adrienne

>

> For those of you who say you will never have surgery, I say you are not in enough pain. For those of us who couldn't bear another day of excruciating pain, surgery is the only option. I had surgery two years ago and I am much better. Am I as good as new? No. Am I better off? Yes. I was able to have the "simple" laminectomy and not fusion. My friend had the fusion and was in a brace for about 12 weeks. She is doing great. The brace is off and she can walk!

>

> I wish you the best, Ann. Keep your thoughts positive!

>

>

[Guest guest]

Alls cool , it's not the first time, luckily for me where I missed out on

the body side, I got a good mind and it's open to many ideas and thoughts so can

understand what you were saying... If only it was that simple! In a good world

I'd be perfect!

The answer is so easy to enjoy each day as best you can doing what you can but

be gentle on yourself. ( this bit I forget) Your precious and deserve a

fantastic day. Tho not always easily to remember some days, when the pain won't

let you think as it sinks it's claws in deep, scaring your soul...

That sounds morbid, sorry but I'm sure it does, hope you enjoy your day

Cheers Adrienne

> >

> > For those of you who say you will never have surgery, I say you are not in

enough pain. For those of us who couldn't bear another day of excruciating pain,

surgery is the only option. I had surgery two years ago and I am much better. Am

I as good as new? No. Am I better off? Yes. I was able to have the " simple "

laminectomy and not fusion. My friend had the fusion and was in a brace for

about 12 weeks. She is doing great. The brace is off and she can walk!

> >

> > I wish you the best, Ann. Keep your thoughts positive!

> >

> >

>

[Guest guest]

You and the doctors are so right when you say, " You'll know when it's time. " My

heart goes out to everyone I read about who feels their backs are against the

wall with this SS pain. I knew when it was time when I wanted to die and prayed

every night to die. I'd had fibromyalgia pain my whole life, but this SS is

something few people will have to deal with in their lives. 3 years out from

surgery, I still have some pain, but it is manageable pain. I had fusion with

laminectomy and was in a brace for 3 months. I still put on that brace when

I've done too much.

My surgery was done by a neurosurgeon, not an orthopedist, due to my choice.

Those of you who can't have the surgery, get a good pain management specialist.

Perhaps a pain pump would help you?

Now I have to decide what to do about my cervical SS. Oh yeah, I'll know.....!

[Guest guest]

What pain do you get with SS? When you've so many thing wrong it's hard to know

what is causing what...

Also suffer with FM along with a list of others.. So can you tell me what SS

causes

Cheers

Adrienne

>

>

> You and the doctors are so right when you say, " You'll know when it's time. "

My heart goes out to everyone I read about who feels their backs are against the

wall with this SS pain. I knew when it was time when I wanted to die and prayed

every night to die. I'd had fibromyalgia pain my whole life, but this SS is

something few people will have to deal with in their lives. 3 years out from

surgery, I still have some pain, but it is manageable pain. I had fusion with

laminectomy and was in a brace for 3 months. I still put on that brace when

I've done too much.

> My surgery was done by a neurosurgeon, not an orthopedist, due to my choice.

Those of you who can't have the surgery, get a good pain management specialist.

Perhaps a pain pump would help you?

> Now I have to decide what to do about my cervical SS. Oh yeah, I'll

know.....!

>

[Guest guest]

i was meaning noone in my family understands, not those who are here. SorryFrom: BRUCE WINGO <joanwingo2@...>Spinal Stenosis Treatment Sent: Sunday, October 2, 2011 10:32 AMSubject: newly diagnosed

To say that "noone here seems to understand" was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it.The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving.I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it.

Joan

Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of

suscide,

but guess I am too big a

coward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God Bless you!!

[Guest guest]

I empathise with you,as i also suffer from other problems beside three level stenosis.I do not take any pain meds but I do use and have used for two years a low level laser machine that reduces my everal areas of pain.If you have an interest you can e/m me @ jerflo13@... newly diagnosed

To say that "noone here seems to understand" was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it.The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving.I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it. Joan

Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times ofsuscide,but guess I am too big acoward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God Bless you!!

[Guest guest]

Words are so easily misunderstood, even more so when souls are plaugued with

insistent pain and each of us harbour different problems each unque

But what better than to have this place where we can vent and everyone

understands in one way or another.

, my siblings and parent don't understand either and it's not nice and I

believe it scares my kids deep down. I just try to keep a focus on today and

plan for tomorrow I've had a hard time getting Dr's listening to me either it's

as tho apart from a select few me or my words don't exist at all.

Joan, I also want to do many things with my 3 grandies but grasp every sec I can

get with them, tho one I've yet to cuddle, our daughters new fiancé daughter,

but they are over the other side of the world and only chat on Skype, we hope to

visit next year...

Cheers All

Adrienne

>

> i was meaning noone in my family understands, not those who are here. Sorry

>

>

>

> >________________________________

> >From: BRUCE WINGO <joanwingo2@...>

> >Spinal Stenosis Treatment

> >Sent: Sunday, October 2, 2011 10:32 AM

> >Subject: newly diagnosed

> >

> >

> > 

> >

> >

> >To say that " noone here seems to understand " was an unfair thing to say. I

completely understand. I feel the same way. I also have many other health

problems besides spinal stenosis. The fact that my family loves me is what keeps

me going. I would never purposely hurt them. However, I get so frustrated

because my body will not let me do the things that I want to do with my six

grandkids. When I try, I pay for it.

> >The neurosurgeon told me to let him know when I'm ready for surgery. I'm

scared to even think about back surgery. I know the day may come when I have to

have it, but for now the shots and medicines are keeping me moving.

> >I never saw my last post on this site so I'm not sure what caused that. Maybe

this one will make it.             Joan

> >

> >

> >

> >

> >>

> >> 

> >>Thanks for writing Cathie, I am a very depressed unhappy person. I am just a

REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a

few steps without sitting are laying down. I have tried so many things pills,

shots, etc with no relief. My back and my legs hurt so bad and sometimes they

burn. I can't even go to the gro. store anymore. I am scheduled for surgery on

the 14th, but I am so sc ared and undecided, as the neurosurgeon  ,I asked him

would this surgery take away my pain, and he said he couldn't promise me

anything. How scary is that.?? I feel like I am being tortured for some reason.

Seems once they try to fix one thing that will call for more surgeries. I can't

work anymore and that is killing me.To be truthful with you I have even thought

many times of suscide, but guess I am too big a coward for that.Hope you will

keep in touch, because noone here seems to understand. Have A Great Day and Feel

Better. God Bless you!!

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[Guest guest]

That's alright. I understand. I am misunderstood at times also and it is frustrating. It is hard to think straight when you are in pain, I went to a hand specialist for a ganglion cyst on my wrist. He did all kinds of tests and finally told me that my uric acid is high. Now I have to talk with my family doctor about that. There's always something. Joan

i was meaning noone in my family understands, not those who are here. SorryFrom: BRUCE WINGO <joanwingo2@...>Spinal Stenosis Treatment Sent: Sunday, October 2, 2011 10:32 AMSubject: newly diagnosed

To say that "noone here seems to understand" was an unfair thing to say. I completely understand. I feel the same way. I also have many other health problems besides spinal stenosis. The fact that my family loves me is what keeps me going. I would never purposely hurt them. However, I get so frustrated because my body will not let me do the things that I want to do with my six grandkids. When I try, I pay for it.The neurosurgeon told me to let him know when I'm ready for surgery. I'm scared to even think about back surgery. I know the day may come when I have to have it, but for now the shots and medicines are keeping me moving.I never saw my last post on this site so I'm not sure what caused that. Maybe this one will make it.

Joan

Thanks for writing Cathie, I am a very depressed unhappy person. I am just a REcluse anymore. I have spinal stenosis and DDD plus RA and I can't walk but a few steps without sitting are laying down. I have tried so many things pills, shots, etc with no relief. My back and my legs hurt so bad and sometimes they burn. I can't even go to the gro. store anymore. I am scheduled for surgery on the 14th, but I am so sc ared and undecided, as the neurosurgeon ,I asked him would this surgery take away my pain, and he said he couldn't promise me anything. How scary is that.?? I feel like I am being tortured for some reason. Seems once they try to fix one thing that will call for more surgeries. I can't work anymore and that is killing me.To be truthful with you I have even thought many times of

suscide,

but guess I am too big a

coward for that.Hope you will keep in touch, because noone here seems to understand. Have A Great Day and Feel Better. God Bless you!!