Hi everyone

December 15, 2004

Hi Holly,

I'm glad you're starting to feel better.

I get a bad case of the flu every year and this year I was spared. Perhaps it

was because I was having so much pain.

Are you planning to speak to your Medtronic guy before you have the MRI.

I hope they can find something so they can figure out these headaches.

Take care,

Jeff-NY/PA

Moderator

Hi everyone

Dear Stimulator Friends,

I am sorry that I haven't been on for a while I came down with the

flu. I wasn't really able to function like I had wanted too. Right

now I just have the cold part of it. Jeff that is great I am glad

your surgery was a success. The soreness is understandable my

stimulator guy told me that it can take up to six months to not feel

pain there where you where cut for surgery.

To update you all about my stimulator it's still a success helping

me with pain and my bladder. My appointment went well with my

surgeon for a follow up. However he is going to have a MRI done on

the 23 for my headaches. I pray that it doesn't mess up the

stimulator my medtronices guy will have to reprogram everything once

again. I am praying that they will find something on the MRI to fix

it the headaches. I appreciate all of your support and all that you

guys do for me.

take care

Holly Moderator

April 1, 2005

Hi :

Hope you have a wonderful trip to visit your son. Please be sure

to thank him for volunteering for the military. We are so fortunate

that we have so many young people do this. My son, although out now,

was a Sargent in the Marines. Although he is now a plumber, he is

ALWAYS a Marine first. Tell your son we are grateful.

I still have the double vision. It is better now than it was,

sometimes I go a whole hour without it forward (It is ALWAYS when I

look to either side). I have an appointment today with the

Neurologist. Hopefully he will have an answer for me. I do not see

the eye doctor until the end of the month. My voice is very raspy

too, and has been for more than a week. No sore throat, just my

voice sounds like my throat must be raw ... but it is not. This is

not a good voice for the telephone.

Oh well, all of the results of the surgery seem to be very good. I

am trying new foods .... slowly and carefully .... so far so good.

As of this time, I have not lost or gained any more weight ...

staying at the 45 pound loss!

The incision marks on my chest are not bad. Two of them are really

fading well, 2 are sorta red, round and not too pretty and the

largest one has a thread hanging out of it. I see the surgeon on

Tuesday. I do not believe there is anything wrong with any of them,

it is just funny how everything heals differently.

I have been thinking of you often and hope things go well. I too,

would be concerned about the increase of the drug, however, I am SO

hesitant to take drugs, that I KNOW I am absurd! Fortunately, you

are not.

Please enjoy the visit with your son. Treasure every minute, as

all the good times are over way too fast.

Kathie in Pittsburgh

>

> Hi, It's been a while since I have posted, I have been very busy

> getting ready to go see my son in NC. Pellegrini has put me on

> Diltiazem for my E spasms. I started with one 4 times a day for a

> week, than go to 2 four times a day for a week, and than 3 four

times

> a day for a week. I'm nervous about flying out of state right on

the

> week that I increase to the full dose of this medication that is

new

> for me. So far I notice I am a little more tired but thats about

all.

> I've had blood pressure problems for the past 5 years though, and I

> have extra heart beats or palpitations and a slight heart murmur.

So

> it kind of surprises me that I would be put on this medication

> without any follow up for 3 months to see how it effects my blood

> pressure ect. I guess I am just curious what others have

experienced

> with this medication, is it pretty well tolerated by most or not.

> Also I wanted to tell I hope everything works out for your

> daughter and grandchild. Mike I think you said your surgery is the

> 16th. I probably won't have access to a computer while I'm visiting

> my son (unless I go on base), so I wanted to say now that I hope

your

> surgery goes smoothly and is a huge success, and you heal quickly!

> Kathy, I haven't heard if your blurred vision has gotten better or

> not, but just wanted to let you know I hope your doing much better

> than you were. Also how wonderful to hear from 's wife how

> lucky he is to have her. Everyone else I missed take care, and I

will

> check in when I get back, and try and catch up on the news. You all

> have been so much help to me and I don't want to loose touch. Oh

also

> my best wishes to Carolyn and Cameron. I think about your little

boy

> often and how special he must be to be as strong as he is! One last

> thing if the hairspray theory were to become true I would be in

> serious trouble. Take Care! in WA

April 1, 2005

Hi Kathie, Well I am glad to hear that everything from the surgery is

going well. It's good to hear your getting the vision thing checked

out. I'm also happy to here your son is not in the marines right now

with everything that is going on. I will tell my son what you said,

and I appreciate it also. Weren't you the one too who they thought

has Mathis Gravis (not sure if I spelled that right)? I wonder if

that could have anything to do with your vision or voice. Well I

don't have a lot of time right now and probably won't get another

chance to catch up with everyone until I get back from my trip. So

Take Care and Keep Healing and I'll get in touch when I get back.

in WA

> >

> > Hi, It's been a while since I have posted, I have been very busy

> > getting ready to go see my son in NC. Pellegrini has put me on

> > Diltiazem for my E spasms. I started with one 4 times a day for a

> > week, than go to 2 four times a day for a week, and than 3 four

> times

> > a day for a week. I'm nervous about flying out of state right on

> the

> > week that I increase to the full dose of this medication that is

> new

> > for me. So far I notice I am a little more tired but thats about

> all.

> > I've had blood pressure problems for the past 5 years though, and

I

> > have extra heart beats or palpitations and a slight heart murmur.

> So

> > it kind of surprises me that I would be put on this medication

> > without any follow up for 3 months to see how it effects my blood

> > pressure ect. I guess I am just curious what others have

> experienced

> > with this medication, is it pretty well tolerated by most or not.

> > Also I wanted to tell I hope everything works out for your

> > daughter and grandchild. Mike I think you said your surgery is

the

> > 16th. I probably won't have access to a computer while I'm

visiting

> > my son (unless I go on base), so I wanted to say now that I hope

> your

> > surgery goes smoothly and is a huge success, and you heal

quickly!

> > Kathy, I haven't heard if your blurred vision has gotten better

or

> > not, but just wanted to let you know I hope your doing much

better

> > than you were. Also how wonderful to hear from 's wife how

> > lucky he is to have her. Everyone else I missed take care, and I

> will

> > check in when I get back, and try and catch up on the news. You

all

> > have been so much help to me and I don't want to loose touch. Oh

> also

> > my best wishes to Carolyn and Cameron. I think about your little

> boy

> > often and how special he must be to be as strong as he is! One

last

> > thing if the hairspray theory were to become true I would be in

> > serious trouble. Take Care! in WA

April 3, 2005

HI Cindi:

I take 90 mg of diliatizem up to 3 times per day -- usually just AM and PM and

it has

helped alot. I have low blood pressure to start with -- my main side effects

are

thirstiness, at first drowsy, but not any more, and dry skin if I take more than

180 mg per

day. The effect of the meds is more positive than negative, while I await more

definitive

treatment.

Hope this helps.

Pegy

>

> Hi, It's been a while since I have posted, I have been very busy

> getting ready to go see my son in NC. Pellegrini has put me on

> Diltiazem for my E spasms. I started with one 4 times a day for a

> week, than go to 2 four times a day for a week, and than 3 four times

> a day for a week. I'm nervous about flying out of state right on the

> week that I increase to the full dose of this medication that is new

> for me. So far I notice I am a little more tired but thats about all.

> I've had blood pressure problems for the past 5 years though, and I

> have extra heart beats or palpitations and a slight heart murmur. So

> it kind of surprises me that I would be put on this medication

> without any follow up for 3 months to see how it effects my blood

> pressure ect. I guess I am just curious what others have experienced

> with this medication, is it pretty well tolerated by most or not.

> Also I wanted to tell I hope everything works out for your

> daughter and grandchild. Mike I think you said your surgery is the

> 16th. I probably won't have access to a computer while I'm visiting

> my son (unless I go on base), so I wanted to say now that I hope your

> surgery goes smoothly and is a huge success, and you heal quickly!

> Kathy, I haven't heard if your blurred vision has gotten better or

> not, but just wanted to let you know I hope your doing much better

> than you were. Also how wonderful to hear from 's wife how

> lucky he is to have her. Everyone else I missed take care, and I will

> check in when I get back, and try and catch up on the news. You all

> have been so much help to me and I don't want to loose touch. Oh also

> my best wishes to Carolyn and Cameron. I think about your little boy

> often and how special he must be to be as strong as he is! One last

> thing if the hairspray theory were to become true I would be in

> serious trouble. Take Care! in WA

May 22, 2005

Hi Diane,

Thank you so much for having me and Breanna in your prayers right

now. I know how much you have on your mind as your revision surgery

draws nearer. It is very sweet of you to be thinking of us right

now.

Take care and I hope that you are able to get more sleep now than

the last time that we talked.

> Just a post to tell I am so very glad her pump trial

went so

> well that they went ahead & implanted it. , I hope from

here

> on in that your pain will be tolerable & that you are through going

> through surgery after surgery.

> SB, My hubby & I are more or less in the same boat as you are.

We lost

> my husband's dear Mother on Easter Sunday & she left us her nouse

with

> all of 60 yrs worth of contents. We are very busy like you are

trying to

> get it all cleaned out, new tile put in, my husband is putting in

all

> new baseboard heating & my Revision surgery being done by Dr

Boachie on

> June 7th. Jim wanted the house to be ready for me to come home to

after

> my surgery but like yours it will still be in such a mess that we

will

> be lucky if we get to move in by August or Sept. We have to get

rid of

> most of her furniture so we have room for ours...........if you

knew how

> long I have been waiting to have this Revision, we would have to

be

> getting another house ready for us to move into now.

> Martha I was reading your posts about the numerous health problems

you

> have had to deal with since your Revision, when it rains it

pours. I

> tried to get in touch but you were not at home....probably at

another

> drs office!!! I sure hope things have settled down for you.

> , sure hope you are resting now after the busy week you

have had,

> Breanna certainly keeps you busy, now that your are in my

thoughts &

> prayers everynight.

> Cam you are doing a fantastic job in the absence of our Fearless

Leader.

> Thank you for taking on this hugh job & being there for anyone who

needs

> you.

> I tried to find the pix Tisch posted, I looked in the Feistys

photo

> albums & could not find it, am I looking in the wrong place???

> Well I have 14 days to go from Tuesday. I know so many of our

group have

> had surgery & are now once again erect, I have trouble believing

after

> 5 yrs of being bent over that I may actually be erect after my

surgery,

> seems like a miracle to me, I will have to see myself erect

before I

> will believe it.

> Getting late & I am sure getting tired.

> Still have alot to do to get ready for the surgery, number one on

my

> list is getting my toilet ready with the riser & handrails, then

I have

> to get to the store to get myself a knee length robe, I swore I

am not

> bringing much with me to the hospital as after being in so many

times I

> know I will be in a hospital gown 98% of the time & after bringing

so

> much with me other times I am not going to make that mistake again.

> Hope everyone has a good night.

> Love To All,

> Diane

> PS Welcome to the group Kam, you couldn't have found a better

place for

> support & information.

May 31, 2005

I used to take Depakote and it snowed me big time. I didn't have any side

effects from it but it just made me feel like " medicine head " my thinking

wasn't clear and I just felt drugged. I also have a mood disorder and take

Risperdal..it is a mood stabilizer. It has been a good medication for me.

no side effects, it helps me sleep and it definately has stabilized my moods

I highly recommend it.

Hope this helps,

Sue c

-- Hi everyone

My doctor just put me on Depakote 250,,mood diorder,,I havent read

anything good about this med,,,is anyone on here have taken it?

what others meds is thier for this?

thanks

Star

July 14, 2005

Hi Tara...

I don't think you actually have Harrington rods, as Harrington rods

were attached to the spine with hooks or wires. Some people use the

term Harrington rod in the generic sense (like Kleenix). Also, if

your rod(s) were put in from the side, they are definitely not

Harrington rods (which are put in from the back).

I also had the side incision with rib removal (it's usually referred

to as anterior surgery). Mine was so the doctor could removal discs in

my lumbar spine.

Regards,

> Hi, my name is Tara and I thought I would finally introduce myself to

> the group (I've just been reading posts for a while now). I had

> surgery in 1997 (Dr. Lawrence Lenke, St. Louis Children's Hospital)-

> side incision T11-L3 fusion w/ Harrington rod and screws w/ rib

> removal for the bone fragments as opposed to hip incision. I haven't

> heard of anyone else saying they had the side incision/rib removal,

> so I would be interested to compare notes with anyone who had that.

July 14, 2005

Tara,

What a beautiful post! Sure, you are lucky that your curvatures never

showed. However, your pain seems to be showing. My feeling (and I am not a

medical person) is that it might be worth your while to investigate a Pain

Clinic.

Dedicated clinics are so wonderful for people with chronic pain! It takes

them a little while to really know your situation, so one does go through

evaluation, etc., but in the long run they often really come through! At

least,

that has been my experience with the hospital-related clinic that I attended

for several years. (My curvatures were/are very severe, hence the " several

years " .) I didn't say that to discourage you.

I think that it is wonderful that you have studied to become a nurse, also!

You have taken on a wonderful career. It is also one that is hard on the

body and that is why it would be good for you to get a handle on the pain early

on. (Just my non-medical opinion.)

Good luck to you in your job hunt, and also in your pain control!

Carole

July 15, 2005

Welcome Tara to the club! Congratulations on getting your nursing degree!

I thought it took many years to develop arthritis of the spine. Your surgery

was 8 years ago. Was it a scoli doctor that dxd arithritis? Also, you talk

about pain...have you been evaluated by a scoli expert about that pain?

Excuse me for being so nosy, but you are so young (I know, not 14, but 22) to

be experiencing so much pain. It is my understanding that most of us don't

start being in pain and developing arthritis until our late 30's, 40, and 50's

(not that it stops there). So I'm just wondering if you are experiencing

unnecessary hurting and something could be corrected now. (excuse me, but 'while

you are young.') You shouldn't be in misery at 22!

Trying to be helpful,

Jolene

July 15, 2005

,

Oh ok thanks for the correction - I think my pcp said it once and it

kinda stuck with me. So if not Harrington then what are they called? I'm

curious now. Also, since you said you had the side incision too, have

you experienced any one-sided numbness as a result? I'm sure it's due to

all the cutting on that one side, but one side of my abdomen feels sorta

numb all the time. Just wondering how common that was.

Tara

__________________________________________________

July 15, 2005

I have arthritis, as well... and I'm only 27. I've had my back pain for almost

10 years now.

Buttonjo@... wrote: