Hi there

[Guest guest]

Janice

Because I was trying to AVOID surgery at any cost.The shots were over a 15

year period..and my pain doc would do a course of 3.1-2 weeks apart..so on

average I had 12 a year (2 levels) and I also had my facet joints injected

....[i guess because of RA I have had my wrists, elbows, knees, hips, ankles

and toes injected..(these are not in the 120 count) By far the most painful

injection I have ever had was in my toe.I have a high pain threshold, and I

vomited while my toe was injected.my toes are hurting just thinking about

it]..I was told the likelihood of being able to go back to work as a RN

without restrictions was not very good..so I used the time to put myself in

a financial position that when the time came when I couldn't work anymore I

would be ok..I was diagnosed with RA in my 20's and since marrying and

having my first child at age 26 I had never worked full time.so, I went back

to work full time...Weird thing, I didn't even put my back as one of the

disabling conditions. When I became disabled, I got STD and then LTD

without any problems. When I applied for SSDI I was approved and had my

back pay deposited within 8 weeks. I applied myself, on line, and never had

any problems. Granted, I now meet the qualifications for disability on my

back alone but when I applied and was approved I did not..I am waiting for

some sort of form or update on disability since it has been over 5 years.

FYI for any one else in my position..since I did not list my back as a

disabling condition..if and when I get one of the fill in the blank forms, I

will not include my back..if I did it would cause the form to be kicked out

and read by a human being rather than the computer, which one doesn't want,.

So, if you are filling out disability papers for SSDI make sure you only use

the diagnosis that you were approved on.do not write anything else in..

There is a good group called COFWA..that you might be interested in...

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Wednesday, September 01, 2010 11:09 AM

spinal problems

Subject: Re: Hi there

Why on earth would a doctor give anyone 120 ESI's. I probably had 12 which

they come in 3 injections and I think I had them 4 times. I thought that was

a lot but you sure have me beat. Good grief why did they do that to you?

What was the reasoning behind it?

Janice

[Guest guest]

Barb

I am so sorry to hear what you have had to suffer with...I ended up in the

hospital for 7 days prior to my last surgery as I was walking up the steps

carrying a 12 oz can of coke and went to drop it and moved funny to catch

it.the next morning I could not get up out of bed. Apparently after

multiple attempt to put me in the CT and MRI they finally had to call

anesthesia to put me to sleep..all I did was scream in pain..I remember

NOTHING.I spent a week in the hospital getting dilaudid IV every 2 and

ativan every 2 and I remember nothing.I had no bladder control and although

they had cathed me multiple times it kept on leaking..there idea was to send

me to a nursing home..NOPe . I remember going home from the hospital it

took me 45 minutes to walk from the car to my front door which was about 10

feet. Every time I brought my leg forward I had such severe pain down my

hip and leg that I am surprised I didn't lose my mind.I went in to see my

neurosurgeon (the one I saw in the hospital said there wasn't a fix) anyway

, I had a laminectomy the following week, and I was in such pain prior to

surgery that post op I didn't need pain meds..(other than my regular

narcotics..so I didn't need any extra doses).I felt incredible...it's

amazing if the neuro surgeons numb up your skin really well, laminectomies

are not really painful.if they don't numb your skin, the burning pain is

horrific from the incision..

I hope that neither of us ever has to deal with a tethered cord

surgery..(again for you)

Hugs

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Me

Sent: Wednesday, September 01, 2010 11:06 AM

spinal problems

Subject: Re: Hi there

Oh Deb, I hope you never EVER EVER have to have the tethered cord surgery. I

have had to do it twice and I honestly wanted to die...I was praying to die

because it hurt so incredibly bad. I was on a morphine drip, additional

medication by mouth every 4, morphine pump, baclofen drip and I was still

wanting to die!!! I knew mine was tethered again for about a year and didn't

do anything about it until I had severe problems, when that happened I had

to go in and do it on an emergency basis. I had two days notice! Fun, fun.

I can't have anything like a pain pump because I have had so many surgeries

in that area I have that pseudo-meningocele from no muscle mass left. I wish

I could have a pump or something because this pain is unrelenting. I still

go out and try to do as many things as I can to continue trying to live my

life, but the pain is ALWAYS there.

I'm glad you finally got yours under control. I have heard of a lot of

people that do have their pain from AA under pretty good control for the

most part. It's been a year since my diagnosis and I'm still working on

it....maybe soon it will be.

Barb

[Guest guest]

Hi Deb I was in cofwa for a long time I was a moderator there but the politics

behind the scenec was to much for me so I quit and started my own group. But my

group is just AA and A it is not like this group at all. I am already learning

things from you and the group. There is no such thing a to much information when

it comes to this disease. I have been on Social Security since 1996 I worked for

over 30 years. I was a restaurant manager I worked in huge restaurants an dI

worked 6 days a week 12 hours a day in high heels. No wonder my back is so bad.

I had not been diagnosed with Arachnoiditis when I applied fro SS but I got it

right away. At that time I had only had 3 back surgeries but the MRI's spoke for

themselves and I was awarded SS right away also. I was not diagnosed with Arach

until 5 months after my last surgery. The doctor had tried to hide it for years

he noted it in a surgical report done 5 years earlier. He jsut neglected to tell

me. I think he thought I would sue him but he didn't do anything wrong Arach

mostly comes from to many surgeries and a tendency to form more than normal

amounts of scar tissue.

I can not imagine being a nurse with this disease it would just be to much for

me. Lifting things kills my back even today.I too have had joints injected like

my shoulders and hips and wrists. RA is not a good disease to have my oldest

daughter had it as a child but out grew it by the time she was 10 years old.

Many children can outgrow it but then there are many who do not out grow it. I

feel bad for you I can't imagine the pain you must go through on a daily basis.

I was only 20 the first time I hurt my back and to this day I don't know how I

did it. But I was working and had 2 babies one new born and one was only 18

months old. I got up one morning with a back ache and by evening I was in the

hospital screaming in pain. They made me wait almost 2 years to do the surgery

because of my age they thought surgery wouldn't be necessary. By this time I had

3 babies under 5 years old. It was a very hard time in my life. My children have

never known me without pain.

I am rambling so I will go. Thank you all for allowing me to join this group.

Not only can I learn maybe I can help someone.

Janice

Re: Hi there

Why on earth would a doctor give anyone 120 ESI's. I probably had 12 which

they come in 3 injections and I think I had them 4 times. I thought that was

a lot but you sure have me beat. Good grief why did they do that to you?

What was the reasoning behind it?

Janice

[Guest guest]

Janice

Dr Tennent is a huge contributor to the pain management professional mag I

read monthly..(if he is the pain doc I am thinking of Dr Forrest Tennent)

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Wednesday, September 01, 2010 10:45 AM

spinal problems

Subject: Re: Re: Hi there

I believe it is a combination of to many surgeries plus the ESI's. I have

had quite a few. I have also studied Dr. Sara s works plus Dr. Tennent

of California he is also an expert.Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Janice,

I would love it if you would send me an invite to your group or send me the

name privately..

Deb

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Wednesday, September 01, 2010 11:58 AM

spinal problems

Subject: Re: Hi there

Hi Deb I was in cofwa for a long time I was a moderator there but the

politics behind the scenec was to much for me so I quit and started my own

group. But my group is just AA and A it is not like this group at all. I am

already learning things from you and the group. There is no such thing a to

much information when it comes to this disease. I have been on Social

Security since 1996 I worked for over 30 years. I was a restaurant manager I

worked in huge restaurants an dI worked 6 days a week 12 hours a day in high

heels. No wonder my back is so bad. I had not been diagnosed with

Arachnoiditis when I applied fro SS but I got it right away. At that time I

had only had 3 back surgeries but the MRI's spoke for themselves and I was

awarded SS right away also. I was not diagnosed with Arach until 5 months

after my last surgery. The doctor had tried to hide it for years he noted it

in a surgical report done 5 years earlier. He jsut neglected to tell me. I

think he thought I would sue him but he didn't do anything wrong Arach

mostly comes from to many surgeries and a tendency to form more than normal

amounts of scar tissue.

I can not imagine being a nurse with this disease it would just be to much

for me. Lifting things kills my back even today.I too have had joints

injected like my shoulders and hips and wrists. RA is not a good disease to

have my oldest daughter had it as a child but out grew it by the time she

was 10 years old. Many children can outgrow it but then there are many who

do not out grow it. I feel bad for you I can't imagine the pain you must go

through on a daily basis.

I was only 20 the first time I hurt my back and to this day I don't know how

I did it. But I was working and had 2 babies one new born and one was only

18 months old. I got up one morning with a back ache and by evening I was in

the hospital screaming in pain. They made me wait almost 2 years to do the

surgery because of my age they thought surgery wouldn't be necessary. By

this time I had 3 babies under 5 years old. It was a very hard time in my

life. My children have never known me without pain.

I am rambling so I will go. Thank you all for allowing me to join this

group. Not only can I learn maybe I can help someone.

Janice

Re: Hi there

Why on earth would a doctor give anyone 120 ESI's. I probably had 12 which

they come in 3 injections and I think I had them 4 times. I thought that was

a lot but you sure have me beat. Good grief why did they do that to you?

What was the reasoning behind it?

Janice

[Guest guest]

They do CESI's too...I just had one today. It was actually less painful then

the ones I had in my lumbar spine that dont work anymore.

" Without rabbits a rabbits foot would be nothing but a disembodied

hand full of unidentified toes. " -Pogo

spinal problems

From: ellijaygal@...

Date: Wed, 1 Sep 2010 16:11:11 +0000

Subject: Re: Hi there

Are the injections limited just to the lower back or do they do them wherever

there is a problem??

I know before my surgery after my cervical fusion I was still having problems

with my neck and the pain management doctor mentioned doing injections and I

told him I didn't want injections. Now I wonder what type of injections he was

wanting to do. I don't suppose it matters now, but for other people's sake I

just wandered if they ESI's are specifically for lower back problems or

everywhere.

Barb

>

> > Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> > I have learned so much about this disease and back disorders. I hope to

learn more.

> > Janice

> >

> >

[Guest guest]

Janice, I too have arachnoiditis, was diagnosed at age 26 and am now 56. I've

been fused from C1-C7 and L2-S1. I just learned yesterday that as a result of

all the lumbar fusions I have flatback and a revision was suggested before I

have the next level fused. I have a very painful, badly herniated disc at L1-2.

My whole life seems to have been dealing with surgery and/or pain. My colon and

panceas were removed due to complications of anterior fusions as well. This is

not a success story but I wanted you to know that others are struggling right

along with you. I wish you all the best!!!!!!! Kate

From: Janice

Sent: Tuesday, August 31, 2010 8:29 PM

spinal problems

Subject: Re: Re: Hi there

Three od them were discectomies and one was a fusion and one was to remove all

the hardware. Since I was 23 I have had back surgery every 8 to 10 years the

rest of my life. My grown children have never known me without pain. They are

very helpful and supportive. I don't know what I would do without them.

I now have Arachnoiditis I dont' know if anyone in this group has this disease

but it is a life changing disease that will eventually put me in a wheelchair if

I live long enough. I am already having a lot of problems. I also have

osteoporosis as a result of taking pain meds for the last 40 years. I haven't

had a break yet but I have lost all my teeth due to this. I used to not go out

at all unless it was to the doctor I didn't want anyone to see me. But now I

don't care it just doesn't matter. Somthing else that has effected my spine and

that is the ESI's they try to talk you into all the time. Many people have good

luck with them but for me they were a disaster. I will shut up for now. I really

look forward to talkign with you all. Everyone has a story and I would love to

hear some success stories.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have had

a bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and to many ESI's to remember. I also have Arachnoiditis a disease caused by

built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to learn

more.

> Janice

>

>

[Guest guest]

Hi, , I read where you say ESI's are the likely cause of arachnoiditis. I

don't know what ESI's are but was diagnosed with arachnoiditis 30 yrs ago

following botched laminectomies of L4-5 & L5 -S1. I thought arachnoiditis was

generally caused by poor surgical technique. What are ESI's and why do you say

they cause arachnoiditis? Thanks much, Kate

From: Deb

Sent: Wednesday, September 01, 2010 1:04 PM

spinal problems

Subject: RE: Re: Hi there

Janice

Dr Tennent is a huge contributor to the pain management professional mag I

read monthly..(if he is the pain doc I am thinking of Dr Forrest Tennent)

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Wednesday, September 01, 2010 10:45 AM

spinal problems

Subject: Re: Re: Hi there

I believe it is a combination of to many surgeries plus the ESI's. I have

had quite a few. I have also studied Dr. Sara s works plus Dr. Tennent

of California he is also an expert.Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Yes that's him he is a great pain doctor and an expert on Arachnoiditis.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Arachnoiditis connection is the name of the group. Everyone of us has

Arachnoiditis and several disorders caused by arach.

Janice

Re: Hi there

Why on earth would a doctor give anyone 120 ESI's. I probably had 12 which

they come in 3 injections and I think I had them 4 times. I thought that was

a lot but you sure have me beat. Good grief why did they do that to you?

What was the reasoning behind it?

Janice

[Guest guest]

, I read further in my emails and found what ESI's are so please disregard

that part of my question. Thanks, Kate

From: Kate Carroll

Sent: Thursday, September 02, 2010 12:29 PM

spinal problems

Subject: Re: Re: Hi there

Hi, , I read where you say ESI's are the likely cause of arachnoiditis. I

don't know what ESI's are but was diagnosed with arachnoiditis 30 yrs ago

following botched laminectomies of L4-5 & L5 -S1. I thought arachnoiditis was

generally caused by poor surgical technique. What are ESI's and why do you say

they cause arachnoiditis? Thanks much, Kate

From: Deb

Sent: Wednesday, September 01, 2010 1:04 PM

spinal problems

Subject: RE: Re: Hi there

Janice

Dr Tennent is a huge contributor to the pain management professional mag I

read monthly..(if he is the pain doc I am thinking of Dr Forrest Tennent)

Deb RN

From: spinal problems

[mailto:spinal problems ] On Behalf Of Janice

Sent: Wednesday, September 01, 2010 10:45 AM

spinal problems

Subject: Re: Re: Hi there

I believe it is a combination of to many surgeries plus the ESI's. I have

had quite a few. I have also studied Dr. Sara s works plus Dr. Tennent

of California he is also an expert.Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Please be very careful you can also get Arachnoiditis in the neck. I am told

the pain is horrific and it can take away your ability to use your arms. I

just want everyone to beware of the dangers of these injections. You don't

have to take my word study about it on the internet it will tell you what I

have been saying plus a whole lot more.

Janice

Re: Hi there

>

>

>

>

>

>

>

> Are the injections limited just to the lower back or do they do them

> wherever there is a problem??

>

> I know before my surgery after my cervical fusion I was still having

> problems with my neck and the pain management doctor mentioned doing

> injections and I told him I didn't want injections. Now I wonder what type

> of injections he was wanting to do. I don't suppose it matters now, but

> for other people's sake I just wandered if they ESI's are specifically for

> lower back problems or everywhere.

>

> Barb

>

>

>>

>> > Hello my new group of friends. I am Janice and I am 60 years old and

>> > have had a bad back since I was 20 in 1970. I have had 5 back surgeries

>> > over the years and to many ESI's to remember. I also have Arachnoiditis

>> > a disease caused by built up scar tissue. It effect the whole lower 1/2

>> > of my body. I see a wonderful pain doctor once a month and he has saved

>> > my life. As the Arachnoiditis progresses he helps me with pain issues

>> > and together we deal with what is happening to my lower body. This

>> > disease effect the legs, feet bowels and bladder. It's not very

>> > selective it will change my life as it gets worse.

>> > I have learned so much about this disease and back disorders. I hope to

>> > learn more.

>> > Janice

>> >

>> >

[Guest guest]

Kate I am going to jump in here because you posted this to the group but I am

sure you will hear from too she seems to be very knowledgeable in this

area.

Arachnoiditis can be caused by many things and yes it can be caused by the ESI's

Epidural Steroid Injections. That's an injection in the spine usually given at

the bottom of the spine but if you have neck problems you can also get an

injection there too. The chemicals in the ESI's can literally destroy the very

sensitive nerves in the spine. Arachnoiditis is inflammition at the surgical

site or the injured site. Scar tissue grows and cuts off the sensitive nerves in

the spine thus Arachnoiditis. It can be caused by many things not just the

injections. Surgery is the biggest culprit and it can't be helped. The pain and

the damage to the spine can be horrific to a person. You reach a point where you

have to have surgery then scar tissue forms. It's anever ending process that

gets worse as time goes by. I have had Arachnoiditis since the 1990's but I had

5 back surgeries starting at the age of 23. I am now having trouble with my legs

my bladder my bowels and feet.In the last year it has advanced to the point

where it's hard to walk at times. I pray everyday that I don't lose my ability

to walk.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Janice, Thanks for responding. I too have had many spinal surgeries, starting at

age 26. I'm now 56 and also having difficulty walking at times. My feet burn

tremendously and pull up sometimes, making it very difficult to walk. I spend my

time lying flat or being upright as sitting increases my problems ten-fold. I am

planning a revision surgery for " flatback " from all the lumbar fusions and a

fusion of L1-2. It is hard to say how much of my problem is arachnoiditis and

how much is from these other issues. I pray neither of us loses the ability to

walk and am sorry you are having so many problems. Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 3:53 PM

spinal problems

Subject: Re: Re: Hi there

Kate I am going to jump in here because you posted this to the group but I am

sure you will hear from too she seems to be very knowledgeable in this

area.

Arachnoiditis can be caused by many things and yes it can be caused by the ESI's

Epidural Steroid Injections. That's an injection in the spine usually given at

the bottom of the spine but if you have neck problems you can also get an

injection there too. The chemicals in the ESI's can literally destroy the very

sensitive nerves in the spine. Arachnoiditis is inflammition at the surgical

site or the injured site. Scar tissue grows and cuts off the sensitive nerves in

the spine thus Arachnoiditis. It can be caused by many things not just the

injections. Surgery is the biggest culprit and it can't be helped. The pain and

the damage to the spine can be horrific to a person. You reach a point where you

have to have surgery then scar tissue forms. It's anever ending process that

gets worse as time goes by. I have had Arachnoiditis since the 1990's but I had

5 back surgeries starting at the age of 23. I am now having trouble with my legs

my bladder my bowels and feet.In the last year it has advanced to the point

where it's hard to walk at times. I pray everyday that I don't lose my ability

to walk.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

It sounds like all your problems are probable related to Arachnoiditis. Surgery

will make you worse but if you have to do it then you have to do it. What you

need to do is find a really good pain doctor and start on a regime of drugs that

will keep you on your feet longer. We have to get some type of exercise

everyday. I am not talking about riding a bile or running a marathon.LOL Just

some simple walking enough to keep the old back stretched. If we don't do

something the scar tissue in there just tightens up. It's hard to tell how much

of your pain is coming from injury to the spine or the Arach itself. I don't

know what you take for pain but it must not be working very well. Talk to your

pain doctor.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they

fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a

>bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and

>to many ESI's to remember. I also have Arachnoiditis a disease caused by

built

>up scar tissue. It effect the whole lower 1/2 of my body. I see a wonderful

pain

>doctor once a month and he has saved my life. As the Arachnoiditis

progresses he

>helps me with pain issues and together we deal with what is happening to my

>lower body. This disease effect the legs, feet bowels and bladder. It's not

very

>selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn

>more.

> Janice

>

>

[Guest guest]

Kate is any of your pain sciatic pain like going down your leg? Your in a catch

22 position the surgery will definately make the Arachnoiditis much worse over a

period of about a year but you need the surgery to repair your back. I feel for

you I really do. Do you have a good pain doctor? They can be alife save when you

need them.I have a great one he is jsut the best. We have been experimenting

with different drugs for breakthrough pain and I think we finally got the right

one it's oxycodone. I take methadone for the major pain btu I am on a schedule

with that I take it in the morning and again at night. It works great for the

major pain but if I stand to long or walk to far I have breakthrough pain and

lately I have had a lot of it. But this new drug seems to help.

You do know you will be on pain meds for life dont' you? It's not easy but we

have to do what we have to do to live and get by in this world. If I can be of

any help please let me know.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Hi Janice, Yes I have sciatic pain and other pain in my legs. My leg pain got so

much worse after my pancreatectomy and I don't know if it is due to the disc

herniation or not. It follows the L1-2 nerve root but doesn't stop at the knee,

like it should, but goes on down the leg. My pain doc gives me lots of meds but

is rather remote. Once I missed an appt because I was in the hospital, I had

called the day before to let them know, and he gave a message to the sec. not to

schedule me again. I was able to talk them out of it but it doesn't make me feel

very secure. I'm on 4mg dilaudid 3-4x's a day and 150mcg fentenyl in patches,

which is a whole lot of pain meds. I've been trying to come down but my pain doc

encourages me not to. It worries me that I'll be in agony following the revision

as my tolerance is high.

Take good care, Kate

From: Janice

Sent: Thursday, September 02, 2010 7:28 PM

spinal problems

Subject: Re: Re: Hi there

Kate is any of your pain sciatic pain like going down your leg? Your in a catch

22 position the surgery will definately make the Arachnoiditis much worse over a

period of about a year but you need the surgery to repair your back. I feel for

you I really do. Do you have a good pain doctor? They can be alife save when you

need them.I have a great one he is jsut the best. We have been experimenting

with different drugs for breakthrough pain and I think we finally got the right

one it's oxycodone. I take methadone for the major pain btu I am on a schedule

with that I take it in the morning and again at night. It works great for the

major pain but if I stand to long or walk to far I have breakthrough pain and

lately I have had a lot of it. But this new drug seems to help.

You do know you will be on pain meds for life dont' you? It's not easy but we

have to do what we have to do to live and get by in this world. If I can be of

any help please let me know.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have had

a bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and to many ESI's to remember. I also have Arachnoiditis a disease caused by

built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to learn

more.

> Janice

>

>

[Guest guest]

Kate 4 mg.s is not much Dilaudid. Does it work for you. If it does then it's

enough but if you are still in crippling pain talk to the doctor. I can't

imagine them throwing you out of your program because of a missed appointment

especially since you called and told them you were in the hospital.

When and where will you be haing the surgery. I had sciatica all the way down my

leg and into the toe next to the baby toe. I begged my doctor to cut of the

whole leg and when he siad no I ask him to at least cut off my toe. I have never

had anything hurt so bad. Because I was so young (20) they tried everything to

avoid the myelogram with pantopaque dye an dthen surgery. But once they figured

out that they were going to have to do it because I was getting worse all the

time. So they did it and the very next morning I had surgery. I was on my feet

in 10 hours and home in just a few days. In a month I went back to work and was

as good as new until 8 years later when I hurt it again. The same thing has

happened over and over. I wish you luck and If I can help in any way please just

say so.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

Janice,Thanks for your kind words. My husband's last name is as are my

children's. I'm of the generation of women who tried to make a statement by

keeping the last name given us at birth.

I'm glad to hear you don't think 4mg dilaudid is a boatload. I came down

from the 12mg I was released from the hosp on in June, after my pancreatectomy.

The fentenyl dose is unarguably high and I want to try and get that down next. I

had a meeting with Dr. Kebaish at s Hopkins with regard to the revision and

am now trying to decide if I should go to one of the revision specialists in St.

Louis for a second opinion or just go ahead at Hopkins. I've had many of my

fusions at Hopkins and it is just 5hrs from my home whereas the other revision

experts are further (St. LO, Boston, NYC, San Fran). I do appreciate the

rollercoaster of fusions as I've been on it too, though with complications I've

been able to work very few years since I was 26. I went back for a law degree in

my 40's realizing I'd never return to nursing but only practiced a couple of

years before pain issues prevented it. Maybe if this revision is successful I'll

be able to return to work part time. Are you still working? Do take care of

yourself! Best, Kate

From: Janice

Sent: Thursday, September 02, 2010 8:46 PM

spinal problems

Subject: Re: Re: Hi there

Kate 4 mg.s is not much Dilaudid. Does it work for you. If it does then it's

enough but if you are still in crippling pain talk to the doctor. I can't

imagine them throwing you out of your program because of a missed appointment

especially since you called and told them you were in the hospital.

When and where will you be haing the surgery. I had sciatica all the way down my

leg and into the toe next to the baby toe. I begged my doctor to cut of the

whole leg and when he siad no I ask him to at least cut off my toe. I have never

had anything hurt so bad. Because I was so young (20) they tried everything to

avoid the myelogram with pantopaque dye an dthen surgery. But once they figured

out that they were going to have to do it because I was getting worse all the

time. So they did it and the very next morning I had surgery. I was on my feet

in 10 hours and home in just a few days. In a month I went back to work and was

as good as new until 8 years later when I hurt it again. The same thing has

happened over and over. I wish you luck and If I can help in any way please just

say so.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have had

a bad back since I was 20 in 1970. I have had 5 back surgeries over the years

and to many ESI's to remember. I also have Arachnoiditis a disease caused by

built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to learn

more.

> Janice

>

>

[Guest guest]

I no longer work but when I did it was 12 hours a day 6 days a week on my feet

in high heels. I was a manager of a very big restaurant. I had 150 employees and

we were a very busy place in fact we were the busiest place in town. But it

almost killed me. I had been in the restaurant business for over 30 years when I

had to quit. It broke my heart I loved my job and all the people who worked for

me. I had to stop in 1996 due to my fourth surgery. It just did me in then the

Arachnoiditis spread and grew effecting my legs something awful. I was married

to my second husband at the time. We didnt' need my money he made great money

and we had everything in the world. But he didn't like spending his money

supporting me so it fell apart a few years later. I lived with a man named

Nickie and we had dated in high school. Due to money I couldn't marry him but he

was the love of my life. We fit togethter like gloves. I loved him so. He died 2

years ago and I still grieve for him. I always will.

Why do you want to cut back on your meds. Kate you will now and forever need

pain medication. I hear so many talk about addiction I call it a dependency on

my drugs. But I have come to a place in my mind and heart where it doesn't

matter anymore. I have come to realize if I am to live with any quality of life

I need those drugs. I have never felt drugged sleepy or goofy on the drugs I

only feel relief. The way to make them work is to take them on a schedule

whether your hurting or now take your meds. I take 30mg.s of Methadone in the

morning and 20mg.s at night. If I have breakthrough pain I take oxycodone but I

only need it maybe one time a week. Don't let that consume you Kate.What kind of

pain do you have now? Is it in jsut the back or is it in the legs too. I have

severe leg pain at times and my bladder and bowels dont' work so well either. I

feel it won't be long before more starts to happen to me due to a build up of

scar tissue. I cannot have any more surgeries so I hope and pray that it doesn't

get to the point where I can't walk or care for myself.

I live with my 84 year old mother. I care for her since dad died 2 years ago

also he died 2 weeks after Nick died so it's been hard for us both. I promised

dad I would take care of her. She is extremely healthey takes no drugs at all.

She still helps with the housework and the cooking. Lately I have had a friend

of 25 years move back into town and he is alone and my age. I have been helping

him get settled and his house organized. The same day the hosue closed the

doctor called about a scn he had the day before. His left kidney is totally

consumed with a cancerous tumor. They will be removing it with in a few weeks so

when he comes home from the hospital I will care for him until he can do it

himself. He is under a lot of stress right now so I spend a lot of time with him

lately. I pray he will be ok were very special friends who lost touch years ago

but I got in touch with him about a year ago and now he has moved about 6 blocks

from me.

I better get out of here I am probably boring you to death by now. You take care

and we can talk anytime you want to.

Janice

Re: Hi there

Shad - I disagree. We are all special! hahahaha

Hi Janice,

What surgeries did you have? You said you had five of them. Were they fusions,

diskectomies, or what?

Barb

>

> Hello my new group of friends. I am Janice and I am 60 years old and have

had a bad back since I was 20 in 1970. I have had 5 back surgeries over the

years and to many ESI's to remember. I also have Arachnoiditis a disease caused

by built up scar tissue. It effect the whole lower 1/2 of my body. I see a

wonderful pain doctor once a month and he has saved my life. As the

Arachnoiditis progresses he helps me with pain issues and together we deal with

what is happening to my lower body. This disease effect the legs, feet bowels

and bladder. It's not very selective it will change my life as it gets worse.

> I have learned so much about this disease and back disorders. I hope to

learn more.

> Janice

>

>

[Guest guest]

I am Sally, 47 years young and happily divorced with 2 sons in their twenties,

one with Aspergers and one with Autism, so yep life has been anything but dull.

We live on a small island on the south coast of England and I would love to

talk/penpal with other parents and carers with Autism in their family.

[Guest guest]

Hi ,

Welcome to the group. I'm sorry you're having such a tough time, but you've come

to the right place and it sounds like your very fortunate that you've been

diagnosed and scheduled for HM.

You'll learn from here that everyone is different in what triggers their spasms,

or difficulties swallowing. A common thing though I believe is to not eat

anything at least 3 hours before sleeping. Food just sits in the E and causes us

all kinds of issues during the night. 

For the tired part - not sure I have an answer for that. This condition is very

debilitating. When I can get down protein shakes, antioxidant juice and anything

else packed with nutrition I take advantage of it and have found that helps the

tiredness a lot.

Hang in there and keep us posted.

Kim

________________________________

From: wendyt8951 <wendy.taljaard@...>

achalasia

Sent: Sunday, December 11, 2011 6:22 AM

Subject: Hi there

 

Hi.

I am new o achalasia and to this forum. Around 5 months ago I started waking up

at night drowning and coughing. I thought it was my sinuses. I kept on telling

my GP that it can't be reflux as it does not burn. Eventually she sent me for a

gastroscopy and as soon as they put me under anesthetic liquid started pouring

out of my nose and mouth. Fortunately the anesthetist managed to suck most of

the liquid out before it got to my lungs, but it was a very scary experience.

After having a gastrograffin swallow, another gastroscopy and manometry they

have confirmed I have achalasia.

I am scheduled to go for a HM on the 2nd of February. I have also found sleeping

on a wedge helps, but I cough the whole night. I am tired all the time!

We are South Africans living in Melbourne Australia, and it is hard not having

my family around me for support.

[Guest guest]

Hello .  I am sorry that you are have all these problems.I am glad that

you have found us and we are here tp help and support you as best we can.  If

you have any questions please feel free to ask.  Keep us informed and I will be

thinking and praying that you have a easy surgery and fast recovery.

 

Mueller IV

 

<FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " >

From: wendyt8951 <wendy.taljaard@...>

achalasia

Sent: Sunday, December 11, 2011 6:22 AM

Subject: Hi there

 

Hi.

I am new o achalasia and to this forum. Around 5 months ago I started waking up

at night drowning and coughing. I thought it was my sinuses. I kept on telling

my GP that it can't be reflux as it does not burn. Eventually she sent me for a

gastroscopy and as soon as they put me under anesthetic liquid started pouring

out of my nose and mouth. Fortunately the anesthetist managed to suck most of

the liquid out before it got to my lungs, but it was a very scary experience.

After having a gastrograffin swallow, another gastroscopy and manometry they

have confirmed I have achalasia.

I am scheduled to go for a HM on the 2nd of February. I have also found sleeping

on a wedge helps, but I cough the whole night. I am tired all the time!

We are South Africans living in Melbourne Australia, and it is hard not having

my family around me for support.

[Guest guest]

Hi , I am so glad you have found this group. Achalasia is tough but here

you can always find support from people who know what it is like living with it.

Hang in there and all the best with your myotomy. love Kay, UK

>

> Hi.

>

> I am new o achalasia and to this forum. Around 5 months ago I started waking

up at night drowning and coughing. I thought it was my sinuses. I kept on

telling my GP that it can't be reflux as it does not burn. Eventually she sent

me for a gastroscopy and as soon as they put me under anesthetic liquid started

pouring out of my nose and mouth. Fortunately the anesthetist managed to suck

most of the liquid out before it got to my lungs, but it was a very scary

experience. After having a gastrograffin swallow, another gastroscopy and

manometry they have confirmed I have achalasia.

>

> I am scheduled to go for a HM on the 2nd of February. I have also found

sleeping on a wedge helps, but I cough the whole night. I am tired all the time!

>

> We are South Africans living in Melbourne Australia, and it is hard not having

my family around me for support.

>

>

>

[Guest guest]

Hi ,

glad you found this forum, there is so much information here and it helps

talking with others who are dealing with the same problem.

I only got diagnosed in Sep and had my HM 3 1/2 weeks ago, so I am a newbie here

too.

My wedge lives next to my bed. Most nights I don't use it, but this past

weekend I have lived on it!

Hope your HM goes well.

(Adelaide,Australia)

>

> Hi.

>

> I am new o achalasia and to this forum. Around 5 months ago I started waking

up at night drowning and coughing. I thought it was my sinuses. I kept on

telling my GP that it can't be reflux as it does not burn. Eventually she sent

me for a gastroscopy and as soon as they put me under anesthetic liquid started

pouring out of my nose and mouth. Fortunately the anesthetist managed to suck

most of the liquid out before it got to my lungs, but it was a very scary

experience. After having a gastrograffin swallow, another gastroscopy and

manometry they have confirmed I have achalasia.

>

> I am scheduled to go for a HM on the 2nd of February. I have also found

sleeping on a wedge helps, but I cough the whole night. I am tired all the time!

>

> We are South Africans living in Melbourne Australia, and it is hard not having

my family around me for support.

>

>

>