Hi everyone

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

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.

[Guest guest]

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

[Guest guest]

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

[Guest guest]

,

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

__________________________________________________

[Guest guest]

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

10 years now.

Buttonjo@... wrote:

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

[Guest guest]

Jolene,

Thanks for the congrats on the nursing degree. And thank you for your

concern about my pain. And no- it was my PCP who dx'd the arthritis (at

age 20) - I got fed up with my scoli surgeon a few years back and

haven't seen him since. As far as I can tell, I do have arthritis (based

on my knowledge of the symptoms). Anyways, I'm not scheduled to see my

surgeon for a few years now - my last visit was a special one designed

to evaluate the pains I was having (chest and back) - and to paraphrase

he told me my pains had nothing to do with my surgery (offered no

further explanation/help) - and that my results still looked beautiful.

Needless to say, he's an excellent surgeon (and he has a wonderful nurse

working with him) - but his bedside manner (after surgery anyway) needs

work. Unfortunately I sympathize with his manner because unfortunately

these days doctors do not have nearly enough time to spend with patients

due to high patient load and seeing enough patients/shift to cover their

insurance. (Especially a major prob here in IL - but I will get off my

soapbox). Anyways, I have had CAT scans (with and without contrast) -

basically they said they couldn't tell anything due to the presence of

the rods (wonderful I know). So I don't know what else to do. I swear I

have scar tissue that is causing some of the pain (have one spot that is

extremely painful to the touch at all times) - but not sure what test

could evaluate that and I think more surgery would only lead to more

scar tissue. Any thoughts?

Tara

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

__________________________________________________

[Guest guest]

Serena,

Thanks for your post. It's weird how our bodies adapt to our changes. I

had never thought about it much, but after reading what you said I stood

up and noted how I kinda do the knee bend thing too. Funny. As for what

you said about the admiring the straight back, I think that's perfectly

natural. Symmetry is always beautiful. But asymmetry is unique, and

that's what makes all of us special. No one else can claim to have gone

through what we went through in the past and every day of our lives. We

are better and stronger for it. Sometimes its the hardest thing in the

world to even accept that yep- today is another day and I have to live

through it in pain. Or to realize that hey- its not so bad today and

catch yourself realizing that only having a little pain just made your

day, when others don't have any. But it really is a gift. If nothing

else you have been given that connection to others who are in pain - and

that's priceless. I found that out being a nursing student, and I hope

you all realize it is true for you too just being in this group and

talking to each other.

Tara

Tara and ,

I too had the same fusion. Mine was anterior with rib removal for bone

fusion. I have screws and some other hardware but don't know exactly

what

it's called. I have an S curve but only my bottom curve was 'corrected'

(however, it's never corrected completely). My hips are still quite off

and

I have to either stand with one knee bent or with one foot pointing out

to

the side to be straight. I wear a heel lift in my shoe in the winter

(I'm a

flip flop or barefoot girl in the summer). As for my top curve... it's

not

too bad but there again, I've learned how to hide it by positioning or

with

clothes.

My surgery was in 1987 so my hardware is 'archaic' (a term used by a

neurosurgeon I went to a couple of years ago). However, considering the

technology in 1987, my fusion was done well. My doctor did a good job

and

the neurosurgeon complemented the 'job'. Funny how we are considered

'jobs'

sometimes. A couple of months after my surgery I fell down stairs

without

my brace on and that messed things up a bit..... the doc said I had a

screw

loose (literally) ha ha. However, the screw fused that way because I

refused more surgery so it's not as exact as it would have been but I'm

still blessed to be as straight as I am.

You know we all admire things about other people - their looks, their

intellect, their possessions, their values or whatever it may be.... I

have

to admit that I admire looking at a beautiful and straight back. It's

the

prettiest thing. Doesn't mean I'm feeling down about myself, it just

means

I admire the natural beauty of a straight back. Ever thought about

that?

Sorry, that's off the subject but it popped in my head so I thought I'd

share.

Tara, let me know if I can help.

Serena

__________________________________________________

[Guest guest]

,

Sorry you also are a member of the arthritis club. Let us know if we can

help you with your pain.

Tara

__________________________________________________

[Guest guest]

Tara,

I have the same problem. The doctors keep telling me my surgery looks

" beautiful " and there's no problems. They treat me like the pain is all in my

head because my symptoms don't match what they are looking for or what they

expect. It makes me so mad which only aggravates my pain more because of the

tension. I know there is something wrong... I can feel it. My back makes a lot

of noises along my spine and that just shouldn't happen if my spine is

supposedly fused together. It sounds like my spine is moving and the vertebrae

is moving against each other.

Of course insurance is so expensive and I'm still paying bills from the last

time I tried to get help. I'm trying to pay them off so I can find another

doctor for help. Of course, we all know that insurance will throw a fit about

that.

Tara Tapp <garnetts7@...> wrote:

Jolene,

Thanks for the congrats on the nursing degree. And thank you for your

concern about my pain. And no- it was my PCP who dx'd the arthritis (at

age 20) - I got fed up with my scoli surgeon a few years back and

haven't seen him since. As far as I can tell, I do have arthritis (based

on my knowledge of the symptoms). Anyways, I'm not scheduled to see my

surgeon for a few years now - my last visit was a special one designed

to evaluate the pains I was having (chest and back) - and to paraphrase

he told me my pains had nothing to do with my surgery (offered no

further explanation/help) - and that my results still looked beautiful.

Needless to say, he's an excellent surgeon (and he has a wonderful nurse

working with him) - but his bedside manner (after surgery anyway) needs

work. Unfortunately I sympathize with his manner because unfortunately

these days doctors do not have nearly enough time to spend with patients

due to high patient load and seeing enough patients/shift to cover their

insurance. (Especially a major prob here in IL - but I will get off my

soapbox). Anyways, I have had CAT scans (with and without contrast) -

basically they said they couldn't tell anything due to the presence of

the rods (wonderful I know). So I don't know what else to do. I swear I

have scar tissue that is causing some of the pain (have one spot that is

extremely painful to the touch at all times) - but not sure what test

could evaluate that and I think more surgery would only lead to more

scar tissue. Any thoughts?

Tara

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

__________________________________________________

[Guest guest]

Can you get rid of it for me?

Thanks,

Tara Tapp <garnetts7@...> wrote:

,

Sorry you also are a member of the arthritis club. Let us know if we can

help you with your pain.

Tara

__________________________________________________

[Guest guest]

Tara,

I thought I would respond to the numbness question you asked. I have some

numbness in my left leg and foot. Also, that foot is always warm and dryer

than my other one. Doctors have said it's all due to nerve damage. However

I still have circulation because hair will still grow.

I agree with you about feeling for others in pain. It's real hard for those

that never hurt to understand the depth of it all.

Take care and God bless!

Serena

-- Re: Re: hi everyone

Serena,

Thanks for your post. It's weird how our bodies adapt to our changes. I

had never thought about it much, but after reading what you said I stood

up and noted how I kinda do the knee bend thing too. Funny. As for what

you said about the admiring the straight back, I think that's perfectly

natural. Symmetry is always beautiful. But asymmetry is unique, and

that's what makes all of us special. No one else can claim to have gone

through what we went through in the past and every day of our lives. We

are better and stronger for it. Sometimes its the hardest thing in the

world to even accept that yep- today is another day and I have to live

through it in pain. Or to realize that hey- its not so bad today and

catch yourself realizing that only having a little pain just made your

day, when others don't have any. But it really is a gift. If nothing

else you have been given that connection to others who are in pain - and

that's priceless. I found that out being a nursing student, and I hope

you all realize it is true for you too just being in this group and

talking to each other.

Tara

Tara and ,

I too had the same fusion. Mine was anterior with rib removal for bone

fusion. I have screws and some other hardware but don't know exactly

what

it's called. I have an S curve but only my bottom curve was 'corrected'

(however, it's never corrected completely). My hips are still quite off

and

I have to either stand with one knee bent or with one foot pointing out

to

the side to be straight. I wear a heel lift in my shoe in the winter

(I'm a

flip flop or barefoot girl in the summer). As for my top curve... it's

not

too bad but there again, I've learned how to hide it by positioning or

with

clothes.

My surgery was in 1987 so my hardware is 'archaic' (a term used by a

neurosurgeon I went to a couple of years ago). However, considering the

technology in 1987, my fusion was done well. My doctor did a good job

and

the neurosurgeon complemented the 'job'. Funny how we are considered

'jobs'

sometimes. A couple of months after my surgery I fell down stairs

without

my brace on and that messed things up a bit..... the doc said I had a

screw

loose (literally) ha ha. However, the screw fused that way because I

refused more surgery so it's not as exact as it would have been but I'm

still blessed to be as straight as I am.

You know we all admire things about other people - their looks, their

intellect, their possessions, their values or whatever it may be.... I

have

to admit that I admire looking at a beautiful and straight back. It's

the

prettiest thing. Doesn't mean I'm feeling down about myself, it just

means

I admire the natural beauty of a straight back. Ever thought about

that?

Sorry, that's off the subject but it popped in my head so I thought I'd

share.

Tara, let me know if I can help.

Serena

__________________________________________________

[Guest guest]

I had surgery when I was 16 and by my early 20s I had significant back pain

which was supposedly from arthritis around the surgical area. Now I'm 34

and have been diagnosed with Synovitis in many joints and my rheumy believes

it could be early stages of an auto-immune disease like RA or Lupus. I'm

thinking the scoliosis could be a cause but I guess nobody else thinks that

way.... I just know when you stand a certain way for 15+ years to compensate

for a curve and one leg takes the load of two then you are bound to cause

some significant damage. But that doesn't explain the elbow, wrist and

fingers hurting (even though they aren't near as painful as the knees and

feet).... it may be a whole new condition.... we will see in time. I'm just

trying to make better choices in my diet and hoping to hold off any attack

that's started.

Anyone else dealing with RA or Lupus symptoms?

Serena

-- Re: Re: Hi everyone

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

almost 10 years now.

Buttonjo@... wrote:

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

[Guest guest]

Hi Tara...

I'd have to see your x-rays to tell you for sure what type of hardware

you have. You could also ask your surgeon for a copy of the operative

report. The name of the implants will be included there.

I did have significant numbness all around my incision. It's pretty

common. I was able to return feeling to the area by doing some

therapy. I rubbed things of different textures over the numb areas,

while thinking about how it SHOULD feel. Since it's our brains that

help create new nerve pathways, thinking about how it should feel

speeds up the process. It definitely worked for me.

Regrads,

> ,

>

> 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

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

Well I did some research online and looked at my medical records (the

ones I have- doesn't include the operative report, but yes, I will have

to get a copy). Anyways, it appears the instrumentation used was pedicle

screws. (If memory of my X-rays is correct and believe me I have spent

probably hours staring at those things). I was confused on that though,

because I have an X-ray evaluation and my MRI evaluations (was MRI, not

CAT scan according to the report) that say " Harrington rod " - not that

whoever said that was an orthopedic surgeon, but still these are

doctors....

As for the numbness, around my incision is totally fine and always has

been - it's more the area between my scar and my belly button - closer

to the front. I will have to try your technique though. Never would have

thought of that, but it makes sense - thanks! Oh- here's a funny

thought- wonder if we could trick ourselves into comfort instead of pain

through something similar? Ok nevermind - just tried it and still owww -

(although I'm sure it would be a lonnnng process if it ever would work)

-if only....

Tara

Hi Tara...

I'd have to see your x-rays to tell you for sure what type of hardware

you have. You could also ask your surgeon for a copy of the operative

report. The name of the implants will be included there.

I did have significant numbness all around my incision. It's pretty

common. I was able to return feeling to the area by doing some

therapy. I rubbed things of different textures over the numb areas,

while thinking about how it SHOULD feel. Since it's our brains that

help create new nerve pathways, thinking about how it should feel

speeds up the process. It definitely worked for me.

Regrads,

__________________________________________________

[Guest guest]

,

I know exactly what you are going through. I went through a span a

couple years back when I was trying anything and everything to figure

out what was wrong exactly. I tried meds, had X-rays, had the MRIs, went

to my PCP, went back to my surgeon.... got so frustrated my pain was

severe every single day - probably was depressed too on top of anxiety -

and my PCP noted that and tried to help and being who I am I refused. I

almost quit nursing school. The only thing that saved me was one of my

friends telling me I could do this and make it through. So now I want to

pass that on to you and anyone else reading this - you can do this. You

have control over your pain - you can't make it go away- you may never

know exactly what is causing it, but you have the ability to choose how

you react to it. This doesn't mean ignore your pain and stop

investigating why it is there. Pain is a sign of something wrong. But

stress makes everything worse. Do whatever you can to get rid of the

stress - take things one thing at a time - vent to us - exercise if you

can pain-free - watch a funny movie - do whatever you can. I hope you

are able to see a good doctor soon and I hope you figure out what may be

wrong. Meanwhile, talk to us.

Tara

__________________________________________________

[Guest guest]

Carole,

Thanks for your encouragement! I will definitely have to think about the

pain clinic idea.

Tara

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hi Tara...

Yes, radiologists have a language all their own. :-) If you have only

the incision on your side, and nothing from the back, those screws

also aren't pedicle screws.

--

> Hi ,

>

> Well I did some research online and looked at my medical records (the

> ones I have- doesn't include the operative report, but yes, I will have

> to get a copy). Anyways, it appears the instrumentation used was pedicle

> screws. (If memory of my X-rays is correct and believe me I have spent

> probably hours staring at those things). I was confused on that though,

> because I have an X-ray evaluation and my MRI evaluations (was MRI, not

> CAT scan according to the report) that say " Harrington rod " - not that

> whoever said that was an orthopedic surgeon, but still these are

> doctors....

>

> As for the numbness, around my incision is totally fine and always has

> been - it's more the area between my scar and my belly button - closer

> to the front. I will have to try your technique though. Never would have

> thought of that, but it makes sense - thanks! Oh- here's a funny

> thought- wonder if we could trick ourselves into comfort instead of pain

> through something similar? Ok nevermind - just tried it and still owww -

> (although I'm sure it would be a lonnnng process if it ever would work)

> -if only....

>

> Tara

[Guest guest]

,

Well I guess I need that op report...

Tara

__________________________________________________

[Guest guest]

Serena,

Have you had blood tests for ANA or rhematoid factor? With the symptoms

you said, I agree that you may have some sort of rheumatoid disease

process going on (also because you are a woman in your 30s). There are

many tests that could diagnose exactly what you have (or don't have) -

just having one be positive isn't necessarily diagnostic - I myself had

a positive ANA once along with my Raynaud's disease (which can be

associated with rheumatoid disease if you didn't already know) - but

then I had a negative ANA and no further symptoms. I would suggest that

you go for the blood tests and do some research along with talking to

your rheumatologist. I hope you get this figured out soon - best of luck

to you -

Tara

I had surgery when I was 16 and by my early 20s I had significant back

pain

which was supposedly from arthritis around the surgical area. Now I'm

34

and have been diagnosed with Synovitis in many joints and my rheumy

believes

it could be early stages of an auto-immune disease like RA or Lupus.

I'm

thinking the scoliosis could be a cause but I guess nobody else thinks

that

way.... I just know when you stand a certain way for 15+ years to

compensate

for a curve and one leg takes the load of two then you are bound to

cause

some significant damage. But that doesn't explain the elbow, wrist and

fingers hurting (even though they aren't near as painful as the knees

and

feet).... it may be a whole new condition.... we will see in time. I'm

just

trying to make better choices in my diet and hoping to hold off any

attack

that's started.

Anyone else dealing with RA or Lupus symptoms?

Serena

__________________________________________________