Holly

[Guest guest]

So sorry to hear that Holly's feeling bad. You are both in my thoughts

and prayers. Please keep us posted.

Love

C 2

On 26 Nov 2003, at 03:05, ajaomom@... wrote:

> Hi everyone,

> I am just sending a quick post, holly isnt doing very well, she is

> having a hard time breathing, coughing constantly, her throat hurts

> and her head hurts, she is miserable, i think she may end up in the

> hospital. Keep usin your thoughts and prayers, please.

>  

> Love and hugs,

> Aj and Holly

>

>

>

>

[Guest guest]

So sorry to hear that Holly's feeling bad. You are both in my thoughts

and prayers. Please keep us posted.

Love

C 2

On 26 Nov 2003, at 03:05, ajaomom@... wrote:

> Hi everyone,

> I am just sending a quick post, holly isnt doing very well, she is

> having a hard time breathing, coughing constantly, her throat hurts

> and her head hurts, she is miserable, i think she may end up in the

> hospital. Keep usin your thoughts and prayers, please.

>  

> Love and hugs,

> Aj and Holly

>

>

>

>

[Guest guest]

WE found out today, Holly has Pneumonia..........but they didnt hospitalize and won't if she starts improving. I will post more later. Aj

[Guest guest]

WE found out today, Holly has Pneumonia..........but they didnt hospitalize and won't if she starts improving. I will post more later. Aj

[Guest guest]

Thanks, Aj for your up date on Holly. I'm sure she's taking antibiotics and they should knock the Pneumonia right out of her. Hope...Hope... Tell her hi from me and to take it easy so she will get well fast.

Mi. Carmen

[Guest guest]

Hope she gets to feeling better soon. (n, 14, systemic)

Re: Holly

WE found out today, Holly has Pneumonia..........but they didnt hospitalize and won't if she starts improving. I will post more later. Aj

[Guest guest]

Happy Thanksgiving Everyone!!!!! Well Holly had a pretty good nights sleep last night, her first in 4 nights, they are still sleeping, i am having some early mommy time, i never, NEVER have mommy time. So I am using that time to catch up on my email. I will post later today and let you all know how she is..........don't eat too much turkey!!!!!!

Luv and Hugs,

Aj

[Guest guest]

Happy Thanksgiving Everyone!!!!! Well Holly had a pretty good nights sleep last night, her first in 4 nights, they are still sleeping, i am having some early mommy time, i never, NEVER have mommy time. So I am using that time to catch up on my email. I will post later today and let you all know how she is..........don't eat too much turkey!!!!!!

Luv and Hugs,

Aj

[Guest guest]

Mosy definately will do AJ big hugs!

Holly girl! much Love from

Uncle Rusty Limbs!

and many good thoughts and lots of PRAYERS!

[Guest guest]

AJ and Holly...you know without any doubts you guys are in my thoughts and prayers today. Holly girl you are one tough cookie and will fly through this. n, take a breath and know you will be okay too!!! Please send me the mailing address if she will be there several days if not I will send to your home addy.......

you uys hang tight and hang tough!

love ya!!

Donna

[Guest guest]

Hi Aj:

I have been thinking of you all today. How did surgery go? How is Holly?

Let us know how all went when you can.

Take care.

Patty

[Guest guest]

Hi Aj:

Happy to hear Holly did so well and came through with flying colors:) Hope

she is home soon.

Take care.

Patty

[Guest guest]

Good going Holly girl! hugs! can't wait to meet ya'll

in San Diego!

HPLTA Rusty

On Sat, 17 Apr 2004 18:27:09 -0000 " ajaomom " <ajaomom@...> writes:

> Hi guys,

> Just wanted to let you all know that holly did really well, the

> did the reflux surgery and while they were looking around they found

>

> a small hernia, so they fixed that, and the dentist came in and

> pulled to teeth. She is doing whaat i think is remarkably

> well.........they are giving her morphine for pain, but the last

> time they gave that was this morning at 8. We will prolly be here

> till Monday.

>

> Luv ya,

> Aj

> (thanks for all the positive thoughts!!!

>

>

>

>

[Guest guest]

Great to hear!!! Hugs! Prayers! Love to All!

Rusty

On Sat, 17 Apr 2004 18:27:09 -0000 " ajaomom " <ajaomom@...> writes:

> Hi guys,

> Just wanted to let you all know that holly did really well, the

> did the reflux surgery and while they were looking around they found

>

> a small hernia, so they fixed that, and the dentist came in and

> pulled to teeth. She is doing whaat i think is remarkably

> well.........they are giving her morphine for pain, but the last

> time they gave that was this morning at 8. We will prolly be here

> till Monday.

>

> Luv ya,

> Aj

> (thanks for all the positive thoughts!!!

>

>

>

>

[Guest guest]

-AJ..

Glad to hear Holly came though her surgery with flying colors... hope

shes on the mend and back home pronto...

Give her a hug from us...

hugs Helen and ( 6,systemic)

-- In , " ajaomom " <ajaomom@a...> wrote:

> Hi guys,

> Just wanted to let you all know that holly did really well, the

> did the reflux surgery and while they were looking around they

found

> a small hernia, so they fixed that, and the dentist came in and

> pulled to teeth. She is doing whaat i think is remarkably

> well.........they are giving her morphine for pain, but the last

> time they gave that was this morning at 8. We will prolly be here

> till Monday.

>

> Luv ya,

> Aj

> (thanks for all the positive thoughts!!!

[Guest guest]

In a message dated 4/18/04 1:24:59 PM Eastern Daylight Time, ajaomom@...

writes:

<<

Hi Patty,

Thanks for the great thoughts and thinking of us all day, i dont know

about you, but it sure was the longest day of my life, she is doing okay now,

they

are talking of letting her go home today or tomorrow.

luv and hugs,

Aj

>>

Hi Aj:

You're welcome:) I know that feeling when they take your child into the OR,

something I don't care to experience ever again:(

Hope she gets to come home today.

Take care.

Patty

[Guest guest]

Hi Patty,

Thanks for the great thoughts and thinking of us all day, i dont know about

you, but it sure was the longest day of my life, she is doing okay now, they are

talking of letting her go home today or tomorrow.

luv and hugs,

Aj

[Guest guest]

n,

Thanks for keeping us posted on Holly. So glad that she's feeling better.

Our thoughts are with you! (and Ezra, 7 year old systemic)

[Guest guest]

Hi AJ,

I was so glad to read that Holly's surgery went well. Thought that was

terrific, how they were able to do the hernia procedure and dental work

all at the same time. I hope Holly has a quick and uneventful recovery

from all of this and that she's feeling lots better real soon. Send her

our love and get well wishes.

With Lots of Love and Aloha,

Georgina, Josh & Kayla

ajaomom wrote:

> Hi guys,

> Just wanted to let you all know that holly did really well, the

> did the reflux surgery and while they were looking around they found

> a small hernia, so they fixed that, and the dentist came in and

> pulled to teeth. She is doing whaat i think is remarkably

> well.........they are giving her morphine for pain, but the last

> time they gave that was this morning at 8. We will prolly be here

> till Monday.

>

> Luv ya,

> Aj

> (thanks for all the positive thoughts!!!

[Guest guest]

AJ...glad to hear all went well! Hugs to all!!!!!!

Donna

[Guest guest]

AJ -

Yeah!!! Way to go Holly! I can't believe how much they did! What a trooper!

Alia and caroline, age 2, poly/uveitis

-----Original Message-----From: ajaomom [mailto:ajaomom@...]Sent: Saturday, April 17, 2004 1:27 PM Subject: HollyHi guys, Just wanted to let you all know that holly did really well, the did the reflux surgery and while they were looking around they found a small hernia, so they fixed that, and the dentist came in and pulled to teeth. She is doing whaat i think is remarkably well.........they are giving her morphine for pain, but the last time they gave that was this morning at 8. We will prolly be here till Monday.Luv ya, Aj(thanks for all the positive thoughts!!!

[Guest guest]

Holly

I glad things FINALLY worked out for you. You have a paddle lead in

now right, where they do a lamenectomy and then put the leads directly

on the nerves? (done by medtronics -of course) Good luck with school!

Jaci

On May 11, 2004, at 2:37 PM, hollym262002 wrote:

> Dear Group,

>

> I am excited that we are growing in numbers. I feel that the more we

> have it will help each and everyone of us at one time or another.

> Those you of you that just had your impant I hope that your recovery

> has been good and successful. I do understand the pain that comes with

> getting it done but its worth it.

>

> As for me I had my surgery on April 28th the brand that was used is

> Medtronic it has been a success so far and I know it will be for the

> rest of my life. The doctor told my parents that the battery should

> last up to five years before it has to be replaced due to the testing

> they did in the OR. For some of you that dont know my history I had a

> tarlov cyst decompressed in 99 in the low back and than seven months

> later I had to get a teathered cord realse done on the low back due to

> the spinal cord being teathered and how my syptoms were severe.

>

> My surgeon than advised me to go to a pain specialist I was in denial

> about getting help for a year and a half. I than called my surgeon and

> told me to go to a pain specailist. I went through medications and

> injections nothing seemed to work. So I went back to him for a second

> opinion, he than told me that I had nerve damage. He than recommended

> a spinal cord stimulator he told me that he didnt do them that I would

> have to go back to my pain doc and have him do it.

>

> I than went through the trail with success it took my pain from 9-10

> to 0-1 on my worst day. This took place in fall of 2002 so I got an

> ANS implant it worked great until four to six weeks out one of the

> leads moved. So than in dec my pain doc did a revision however with

> that I got a spinal headache. He than reffered me to a nerosurgeon to

> look at me he ran tests we couldnt find the location of the leak. He

> wasnt happy with  my pain doc cause he didnt test for location before

> he did two blood ptaches.  Right now for that I am on an anti nausa

> medication and we will be doing testing again for it.

>

> Back to the stimulator after the csf leak check with that surgeon my

> pain doc asked him to do a paddle lead with the same unit inside me.

> It wasnt successful so than two months latter we did another revision

> of the paddle connection and no success. Please do not get discouraged

> about my history it had to play a part of what my doctor the pain doc

> wanted done. With all the revisions however I did learn and grow

> through each trial of life with this.

>

> My neurosurgeon told me he had success all the time with the

> stimulator of the Medtronic kind that he put in people. In which I can

> aggree very well with since my testing in or and out come with

> surgery  was a success. I know that with my religious beliefs took a

> great part in this I am sure for others you can understand too.

>

> I promise you all I will try to come on as much as possible to help

> you with whatever questions you might have. I am in my second week of

> recovery and my back gives me a hard time setting at the computer but

> I do check every other day at least it depends on how I am feeling.

>

> For those of you that dont know my age I am 28 and have had a total of

> seven back surgeries now that includes all the stimulator ones.

>

> I pray that all of you are doing well with things please let me know

> if you need me for anything I am here for you. Oh one more than I am

> getting things in order for me to go back into Medical Assiting School

> once I finish I want to work with back patients in a doctors office or

> children with cancer in a clinic. 

>

>

> I hope you all have a great day keep staying postive about life that

> is important.

>

> Love ya all

> Holly Moderator

>

>

>

>

>

[Guest guest]

Holly

I have a question for you I was reading you letter to e and you

said that you had restrictions for lifting and I was wondering if you

were talking about immediately following the surgery or if you were

talking about immediately after the surgery and for the rest of your

life? If you mean for the rest of your life I was wondering what

restrictions your doctor gave you?

Thanks Holly

Jaci

On Aug 15, 2004, at 9:59 PM, hollym262002 wrote:

> Dear e,

>

> Hi I can understand what you are going through right now. Its good to

> hear that your doctor is helping you in reliving your pain. I can

> testify that the stimulator really helps. Here are some websites that

> you can learn more about the stimulator and how it works.

> www.tamethepain.com www.medtronic.com www.ans-medical.com Before you

> get this done make sure that your insurance covers the brand of

> stimulator and talk to each company about there product. Medtronic

> will tell you that they have been around longer and that is true.

> There is a company  I cant remember that is getting FDA approval for a

> stimulator that is internal that you can recharge. Mike knows a little

> bit more about that one than I do.

>

> I do have the medtronic brand it costs less compared to ans my

> insurance didnt care for ans because they didnt find out the cost

> until after I had the surgery neither did I. So that is why I  advise

> people to talk to the companys and get the info. It will take

> medtronic I believe a year before they get the internal brand fda

> approved that is the rechargable one of course.

>

> You will have some restrictions as far as lifting in which happens to

> anyone with back problems. I have been a cna and a transfer went wrong

> my back problems started than and continued to  get worse  when I was

> 22. I have had tarlov cyst decompressed then seven months after that

> back surgery  I had a teathered cord release.  I found out from my

> neurosurgeon that  I have nerve damage due to how long it took to get

> things fixed. However he said, I could have been worse I suffer from

> numbness in legs, feet, groin, low back pain, legs, feet, pain, also

> incontince.

>

> However with the spinal cord stimulator my energey has increased the

> numbness is less the pain level is lower example 0-1 when the daily

> pain scale was 9-10 and hard to do my adl's. Now my adl's are easier

> to do. The incontince is less than before people tell me that I look

> healther since my surgery. My internal battery is to last me five

> years than I can get the rechargeable one. I have scar tissue problems

> too however it didnt affect the stimulator the ans we used and it was

> the stimulator that malfuctioned. My surgeon did take out alot of

> scar tissue. I pray that this will give you relief if you have any

> more questions feel free to write me or Mike even the group. I should

> have told you that I am 28 and single though. I know that this will

> help you be able to take care of your child easier.

>

> take care

>

> Holly group moderator

>

>

> > Hello,

> > I am set to have the trial implantation on Friday 8/27.  Can you

> give

> > me any and all information.  Here is my background information.  I

> am

> > a 26 soon to be 27 year old mother of one and wife of 5 years.  I

> > have been a nurse since 1996, essentially jumping feet first into

> the

> > profession immediately after school.  I love being a nurse and

> taking

> > care of patients. I love getting to know people and seeing them

> > recover from illnesses, and even help families cope with the loss of

> > a loved one.  I like being on that side of the spectrum and

> > definitely not this one.  I was assisting a co-worker with the

> > pulling of a patient up in bed almost 18 months ago.  He was around

> > 400#.  Large, I know, but not the largest that I have assisted in. 

> I

> > have done this many times in my life, but something was not meant

> > that day.  I felt a pull in my back, and then numbness descending

> > down my legs.  Thinking that it was a pulled muscle, I popped some

> > Motrin, and went on my day.  Another hour, I was sure that this was

> > definitely not a pulled muscle.  I was sent to the ER, four floors

> > down, and the ER doc also said that he thought it was a pulled

> muscle.

> > He sent me home for rest with a follow up appt in 3 days.  That doc

> > is where the root of the problems went deeper.  He told me that it

> > was all in my head and that there was nothing wrong with me.  He

> > ordered an MRI (pretty odd for someone who did not believe me) then

> > said it was negative when the results came back.  I went to another

> > doc that he sent me to, no avail.  Then, I decided to see my own MD

> > and he realized the seriousness when I could no longer feel anything

> > below my right knee (and I still cannot, and have been told never

> > will).  He got me in immediately in UVA to see Dr. Jane--the

> guy

> > that did Reeve's surgery.  Once the other doctor found

> > this out, he sent me to a neurosurgeon, who, looked at the original

> > MRI and stated I had been herniated all along.  Here I am now--2

> > eipdural steroid injection, one surgery, physical therapy visited to

> > heck, and pilled to death facing a SNS surgery that I am really

> > hoping to work.  I have developed scar tissue so severely that they

> > are worried that this will create more and migrate the leads.  I am

> > sooo happy to have found y'all.  I have read all of the stories and

> > am glad to know that I am not alone.  I would love to be able to

> play

> > with my daughter like I am supposed to.  I can barely get her out of

> > bed in the mornings.  She was 3 months old when this happened.  She

> > is now 19 months old.  Please write back.

> > e

>

>

>

>

>

[Guest guest]

--- Hi Jaci,

You asked about my restrictions following surgery I wasn't allowed to

lift any thing for a two months no bending lifting or twisting. My

perment restrictions is no twisting lifting thing over my head or

reaching over my head or forward reaching for things. I am limited to

weight in lifting 20 pounds maxium and that is due to how small of

frame my body is, these questions that you are asking me are good to

ask your doctor too. You will won't to ask your doc what you can and

can't do exercise wise cause certain lifting machines I can't use. I

may have some limitations but I am loving my stimulator. Feel free to

write me if you have anymore questions as well as Mike and others in

the group. I am here to support you and understand what you are going

through. I wish you the best of success with the stimulator. Hope to

hear how you are doing soon.

Holly Group Moderator

In Stimulator , jaci <Jacid@m...> wrote:

> Holly

> I have a question for you I was reading you letter to e and you

> said that you had restrictions for lifting and I was wondering if you

> were talking about immediately following the surgery or if you were

> talking about immediately after the surgery and for the rest of your

> life? If you mean for the rest of your life I was wondering what

> restrictions your doctor gave you?

> Thanks Holly

> Jaci

>

> On Aug 15, 2004, at 9:59 PM, hollym262002 wrote:

>

> > Dear e,

> >

> > Hi I can understand what you are going through right now. Its good to

> > hear that your doctor is helping you in reliving your pain. I can

> > testify that the stimulator really helps. Here are some websites that

> > you can learn more about the stimulator and how it works.

> > www.tamethepain.com www.medtronic.com www.ans-medical.com Before you

> > get this done make sure that your insurance covers the brand of

> > stimulator and talk to each company about there product. Medtronic

> > will tell you that they have been around longer and that is true.

> > There is a company I cant remember that is getting FDA approval

for a

> > stimulator that is internal that you can recharge. Mike knows a

little

> > bit more about that one than I do.

> >

> > I do have the medtronic brand it costs less compared to ans my

> > insurance didnt care for ans because they didnt find out the cost

> > until after I had the surgery neither did I. So that is why I advise

> > people to talk to the companys and get the info. It will take

> > medtronic I believe a year before they get the internal brand fda

> > approved that is the rechargable one of course.

> >

> > You will have some restrictions as far as lifting in which happens to

> > anyone with back problems. I have been a cna and a transfer went

wrong

> > my back problems started than and continued to get worse when I was

> > 22. I have had tarlov cyst decompressed then seven months after that

> > back surgery I had a teathered cord release. I found out from my

> > neurosurgeon that I have nerve damage due to how long it took to get

> > things fixed. However he said, I could have been worse I suffer from

> > numbness in legs, feet, groin, low back pain, legs, feet, pain, also

> > incontince.

> >

> > However with the spinal cord stimulator my energey has increased the

> > numbness is less the pain level is lower example 0-1 when the daily

> > pain scale was 9-10 and hard to do my adl's. Now my adl's are easier

> > to do. The incontince is less than before people tell me that I look

> > healther since my surgery. My internal battery is to last me five

> > years than I can get the rechargeable one. I have scar tissue

problems

> > too however it didnt affect the stimulator the ans we used and it was

> > the stimulator that malfuctioned. My surgeon did take out alot of

> > scar tissue. I pray that this will give you relief if you have any

> > more questions feel free to write me or Mike even the group. I should

> > have told you that I am 28 and single though. I know that this will

> > help you be able to take care of your child easier.

> >

> > take care

> >

> > Holly group moderator

> >

> >

> > > Hello,

> > > I am set to have the trial implantation on Friday 8/27. Can you

> > give

> > > me any and all information. Here is my background information. I

> > am

> > > a 26 soon to be 27 year old mother of one and wife of 5 years. I

> > > have been a nurse since 1996, essentially jumping feet first into

> > the

> > > profession immediately after school. I love being a nurse and

> > taking

> > > care of patients. I love getting to know people and seeing them

> > > recover from illnesses, and even help families cope with the

loss of

> > > a loved one. I like being on that side of the spectrum and

> > > definitely not this one. I was assisting a co-worker with the

> > > pulling of a patient up in bed almost 18 months ago. He was around

> > > 400#. Large, I know, but not the largest that I have assisted

in.

> > I

> > > have done this many times in my life, but something was not meant

> > > that day. I felt a pull in my back, and then numbness descending

> > > down my legs. Thinking that it was a pulled muscle, I popped some

> > > Motrin, and went on my day. Another hour, I was sure that this was

> > > definitely not a pulled muscle. I was sent to the ER, four floors

> > > down, and the ER doc also said that he thought it was a pulled

> > muscle.

> > > He sent me home for rest with a follow up appt in 3 days. That doc

> > > is where the root of the problems went deeper. He told me that it

> > > was all in my head and that there was nothing wrong with me. He

> > > ordered an MRI (pretty odd for someone who did not believe me) then

> > > said it was negative when the results came back. I went to another

> > > doc that he sent me to, no avail. Then, I decided to see my own MD

> > > and he realized the seriousness when I could no longer feel

anything

> > > below my right knee (and I still cannot, and have been told never

> > > will). He got me in immediately in UVA to see Dr. Jane--the

> > guy

> > > that did Reeve's surgery. Once the other doctor found

> > > this out, he sent me to a neurosurgeon, who, looked at the original

> > > MRI and stated I had been herniated all along. Here I am now--2

> > > eipdural steroid injection, one surgery, physical therapy

visited to

> > > heck, and pilled to death facing a SNS surgery that I am really

> > > hoping to work. I have developed scar tissue so severely that they

> > > are worried that this will create more and migrate the leads. I am

> > > sooo happy to have found y'all. I have read all of the stories and

> > > am glad to know that I am not alone. I would love to be able to

> > play

> > > with my daughter like I am supposed to. I can barely get her

out of

> > > bed in the mornings. She was 3 months old when this happened. She

> > > is now 19 months old. Please write back.

> > > e

> >

> >

> >

> >

> >

[Guest guest]

AJ - Oh my goodness. What a scary emotional day you and Holly went through.

First off, I am glad that her rheumy was able to see her and that they were

able to get something in her quickly. To have gone 8 weeks of this is just

beyond unfair. I am so grateful that she has found a little bit of relief! I

hope that they can stay the course on this one and get through this flare.

Did she have any organ involvement? I hope not.

I am praying for you guys and hoping that this will pass quickly. I hope

that Holly is feeling a little better today.

Alia and Caroline, age 3, poly and uveitis

Holly

Hi Everyone,

We got a scary call yesterday from the doctor (ped), he called and said

Holly's blood work from the day before was alarming. And he was going to

put a

call into her rheumie, if the rheumie still felt as though it wasn't the

arthritis, then he would be admitting her to the hospital for a full work

up.

Well needless to say, I was a wreck, on the inside of course, the whole

day, we

were finally seen by her rheumie at 2, which turned out to be the perfect

time, as the morning Motrin had worn off and she was bad, not usually her

worst

time of day, but not the best, the doctor could see that she was barely

able

to move, just laid on the table not talking, had a temp, lost more weight,

I

mean come on this has been going on now for 8 weeks, and its not like she

is

a newly diagnosed kid, but she finally agreed (she had called oncology and

infectious disease to make sure they agreed) that is was Holly's Systemic

JRA,

though she was presenting completely different then she always

has.........right then and there injected her with 25mgs of mtx, I was like

WOW!! that's

double what she has ever been on, but she said because she is so bad I want

to hit her hard and fast, and then back off when the time

comes..........then

they admitted her upstairs in the hospital, and gave her iv

steroids...........she feels so much better........they are keeping her at

25 mgs mtx a week,

and then 40mgs of pred every other day, and Motrin 3 times a day, at least

for 2 weeks then they are going to repeat labs, the other thought she has

depending on how she is doing, she may do weekly steroid infusions at the

hospital

until she is under better control. The strangest thing happened while we

were on the way home late last night, I almost took her back, she kept

complaining that the house lights and street lights were

green...........anybody ever

hear of this, its all back to normal this morning. I have to call the

rheumie

now and tell her how she is. Thanks for being my support the last few weeks

everyone, I was really scared it was something else, and there is of course

that one niggle inside me that still has the shadow of doubt....

Luv and hugs,

Aj and Holly 11 yrs (systemic jra dx 9/94)