Re: Hello To Group

[Guest guest]

> Hi All. I am a newbie. Just today my doctor advised we that the

HMO

> approved me for Xolair. I have been waiting for over a year for

this

> day. Should get my first shot in 1-2 weeks.

>

> I have pretty severe asthma--230-350 peak flow. The doc warned me

of

> the possible negative side effects and urged careful review to

ensure

> it is helpful in 6 months. He also said FDA will only allow a

> patient to use Xolair for 1 year, and then drop it. Is this what

you

> all are hearing too??

>

> I have moderate-severe allergies (and asthma with the

spring/summer

> pollens, esp Alder trees and grasses. I sure hope this gives

relief

> without reaching for Prednizone.

>

> Take care and I look forward to hearing more of your atories.

>

> Bruce, from the great Northwest.

Bruce,

Welcome to our group This is the first I have ever heard about

only being to get Xolair for one year. It has taken me 6 months to

finally get some relief from it. I sure do hope this is not true.

I have dropped my Prednisone from 40 to 5 mg a day and next week will

be going down even further. The day I am off of Pred is in sight and

I can't wait

Thanks for joining,

Doug

Group founder

[Guest guest]

Glad you could join the group! Your doctor may be overstating the

case...Xolair definitely seems to take six months to reach full

effectiveness in some people...he may be reacting to some HMO imposed

limitation. There is absolutely nothing I've seen that limits

prescribing to one year...that is a rumor. I'm on another drug that

*is* limited...when there is a time limit like that they make a very

big deal about it because there are typically nasty side effects from

staying on the drug too long; all of our physicians would have been

telling us about this limitation. There would also be warnings in the

drug handout and there is nothing like that in there.

As far as Xolair side effects go, short term, they have been very

minimal or none existent for most folks...the drug is expressly

designed *not* to cause any kind of allergic reaction (duh) but seems

to cause the occasional headache, etc. Long term side effects, no one

knows. It does not help everyone, some are helped quickly, some more

slowly, some dramatically, some not. I think the main thing is to look

at the big picture over time...not, " am I better today than

yesterday? " but " wow, seems like this month sure went better than last

month "

With this merry band of wheezers you can feel free to ask your

questions, gritch or brag about your peak flows or pred doses...we've

all been there or know someone who has.

Welcome...

P

> Hi All. I am a newbie. Just today my doctor advised we that the HMO

> approved me for Xolair. I have been waiting for over a year for this

> day. Should get my first shot in 1-2 weeks.

>

> I have pretty severe asthma--230-350 peak flow. The doc warned me of

> the possible negative side effects and urged careful review to ensure

> it is helpful in 6 months. He also said FDA will only allow a

> patient to use Xolair for 1 year, and then drop it. Is this what you

> all are hearing too??

>

> I have moderate-severe allergies (and asthma with the spring/summer

> pollens, esp Alder trees and grasses. I sure hope this gives relief

> without reaching for Prednizone.

>

> Take care and I look forward to hearing more of your atories.

>

> Bruce, from the great Northwest.

[Guest guest]

Dear ,

Welcome to the group and posting. So sorry you are in pain and dealing with the next round of scoli problems, but you are among friends here who fight the common battle.

To your questions, my guess is, that resolving any of the problems you spoke about could help, but are they the biggest battle, probably not, afterall, Flatback is a structrual problem. Weight, and I struggle with that too constantly, is really important. It's hard to loose weight when you can't walk far and pain is with you . So diet is key. I had my revisions at around 195, far from ideal, and many docs refuse to do surgery on us bigger girls till you take off enough weight that they are comfortable. A member asked that I relay that she had surgery for endometriosis and it neither helped or harmed her back.. Breast reduction, also something not on my radar, but if they are digging at your shoulders, and causing pain, I'd check that too. But truly if you get to a great post Harrington Doc well versed in Flatback, and see exactly whats up with you, thats the next step in the battle, as we can't diagnosis you, we are only patients like yourself.

is in you geographical neck of the woods, and her suggestions for docs are good. Northwestern, and then further afield in St. Louis, Dr's Bridwell and Lenke. Many have to travel, doc's that deal with this often, are usually in big cities, and many states aren't as fortunate to have one. In reading you will see many travel to a doc in their region, or even further, I was lucky i was in the Denver area, and had one just down the road.

Also know many of us have gotten told our fusions looked great, many get pooh-poohed off, I sure did. Loss of Lordosis is the problem, along with a Laundry list many of us have, such as DDD, arthritis, stenosis below our fusion mass. So it's key to get to a doc well versed in our problems, and often and usually most regular orthos aren't qualified, or won't deal with us cause they are over their heads with our cases, and so we get told to live with it, or our fusions look great.

So to wrap this up, get seen , good suggestions from both and Cam, and see just what is up with you. It can't hurt to lose weight( I'm working on it myself, it's a struggle), to check out your female problems and options there, but my bet is that more of you problems are structural( loss of Lordosis) than the other items you mentioned. But you need to get seen to see exactly whats going on with you as I am a patient like you and not a doc.

I only had one Harrington( had mine removed in 2000 and have it in a bag at home), but others in our group have had/have two. I looked up the bio of a member we lost last year, cause I remembered him saying he had two, and his were placed in 1973. It might have been true in your neck of the woods that placing two in 1980 was NEW there. I know when I had mine placed in 1973, I only got a Harrington rod by chance, my doc in Santa CA, was going to do an uninstrumented fusion till he met a doc at UCSF that was doing the surgery with Harrington Rods and bracing, and that seemed far better than a year in casts, so we went for it. I was lucky that early to be braced and not casted, as many were casted following surgery way into the 80's. I was lucky to be at a University/teaching hospital, where things were state of the art for the time.

I know all this seems tough, but you have to take it one step at a time.

Colorado Springs

[ ] Hello to group

I'm new to the group and taken the suggestion to read through olderposts before posting. I did find many inspiring and informative, andit's very reassuring to know that I'm not alone in this pain. However,I do have a few questions on topics that have been touched on, but Ihaven't seen specific answers to.Has anyone had surgery for endometriosis and has that helped with lowerback pain? Has breast reduction surgery made a big difference in thepain and does that help long term? Also will surgeons operate onsomeone significantly overweight (230 pounds) and will losing weightalone alleviate the pain?This is my story. I wore a milwaukee brace from age 9 until 13, when mydoctor said I was growing "too tall" and it wasn't helping anymore, thatmy curves (upper and lower) were getting significantly worse. I'm notsure of exact numbers but I believe it was over 80 degrees. At age 14 Ihad a spinal fusion done at the University Hospital in Madison, WI byDr. Denis Drummond, in 1980. Has anyone else had him as a surgeon? Ibelieve he went on to practice at Children's Hospital in Philadelphia.I believe I was also one of the first in the country to have twoharrington rods in my fusion.I remember at my last post op doctor visit being told to avoid horseback riding, skiing, and that I wouldn't need to come back unless I hadchildren or a serious car accident. Since neither happened (I waspregnant twice but had two early miscarraiges) I never went back exceptin 2003 when I had a TIA (small stroke). At that time they said myfusion looked fine.I realise I have been very lucky, I've had a few bouts with pain (mainlyfrom lifting heavy objects) through the years, that would get betterwith rest. I thought of my scoliosis as a childhood problem that hadbeen fixed. Until about two years ago, when I started getting severelower back pain constantly. Also I've had pain in my leg, weakness, andsciatic nerve, that I attributed to my stroke, but now I wonder. I haveoccasional numbness in my fingers and toes, that my neurologist thoughtmay be neuropathy, but tests ruled that out. I have tightness and painin middle of my back, and neck. I've seen a chiropractor and physicaltherapist, but these various pains aren't getting better.I was shocked to read about flatback and realise all of this may berelated to my harrington rods! Does anyone know any doctors anywhere inthe state of Wisconsin that I could start with? Do I need to return tothe University Hospital where I had my original spinal fusion?I really appreciate everyone's help and support. Thank you.

[Guest guest]

Hi Cam,

Thank you for all of your helpful words. I do realise everyone here is a

patient also, I am not expecting medical advice, but I do think it's helpful to

hear what has or has not worked for others.

It definately is a shock to realise that the fusion I thought had " solved " my

scoliosis problems may now be creating more problems!

I feel, as you do, that in retrospect I have been lucky with almost 30 years

relatively pain free. I definately am looking into seeing one of the specialist

doctors for my symptoms. It's kind of discouraging that there aren't more

doctors familiar with the revision surgery, or more experienced. If there are

as many people who will need revisions as I've been reading, there will have to

be a lot more doctors available!

I am also realising that I need to work on my weight issues as well. I've

always been an emotional eater, and used food to make me " feel better " for a

short time while dealing with difficult situations in my life. I've realised

for a while that losing weight would probobly help with my back pain, but now I

feel it is more urgent! Sometimes it's even more scary to think of facing life

without this " crutch " , but it has to be done.

I agree the process has many components, and this is a big one for me. I have a

lot of the same " presenting symptoms " as you did, has surgery helped you with

those? Last night my husband tried to help me stand up straight, but it didn't

really work either.

Has anyone else gotten migraine headaches from their neck being crooked? I've

noticed this symptom since last summer as well.

Take care,

Noreen

>

> Hi Noreen,

>

> Welcome to the group. It is a bit of a shocker to find yourself wondering if

perhaps your spine might not be all that you thought it was, huh?

>

> I am glad you are finding some information that may be useful to you going

forward. I hope you realize that our group is made up of patients like

yourself...no one is a doctor here and so we are just sharing what we have

learned from our own experiences as patients. My thought, based on your

questions, is that you feel like many of us did early on in the " downhill

slide " . Suspicious. Guessing that our earlier surgery or fusion, or the

scoliosis itself, might well be the source of mounting problems.

>

> I think it is very difficult within the context of the current care for us

older scolis to really find definitive answers...they often ending up coming

simply because everything else has been ruled out. I cant tell you how many of

our members have been told by their orthos (mind you...that is what orthos

do....bone work!) ...that the fusion looks fine. Neurologists will be unable to

determine if, where, or how soft tissue/nerve damage might play a roll in pain

or dysfunction. Its frustrating.

>

> My " presenting symptom " was excruciating sciatic pain in the

leg/buttock.....but in retrospect...it started with fairly mild tingling down in

the toes and what I thought was hip arthritis or bursitis. Also. in retrospect,

I was leaning forward, to a point where a friend, gently, but firmly, placed her

hands on my chest and upper back to kind or reminding me to stand up. I

couldnt.....but didnt connect all this together. Neither did my local ortho...a

well trained hip knee + kind of guy. It really all came together for me when,

like you, I was cruising the internet and followed my intuition to a site like

this group. I read, and read, and read as the hair stood up on the back of my

neck. I just knew that I was a classic case of flatback.

>

> I believe,on the continuum, I have been fairly lucky. I had 32 relatively

trouble free years. I did ski and horseback ride. I did not lean forward very

much, nor did I have to go searching very long to locate a top specialist who

confirmed my fears, but also understood the " fix " .

>

> I guess my best advice would be to listen to your body and try to understand

what it is telling you. I cant recall a member having breast reduction or

surgery for endometriosis specifically in an attempt to address low back pain,

although I do recall a member having a hysterectomy several years after revision

surgery when it was determined that fibroids might be the major source of

discomfort she was feeling in the lower pelvic area.

>

> I think you will find that you are best served if you find and consult with at

least 2 highly experienced surgeons who deal with post-Harrington rod patients.

I wouldnt rest until I had seen at least one of the names mentioned here often,

even if you do end up seeing someone where you did your original surgery. At

your stage of the game....experience counts....and sadly there are just not tons

of surgeons who work with our population.

>

> As to the question of weight, I think I would say only that it may or not be

an issue with regard to a surgeon choosing to perform surgery, but it may also

be a barr from performing an anterior procedure, which is often done in

revision. Regardless of the " can they do surgery " question, I think it is

generally well agreed upon that there are many excellent reasons to work on

reducing your body weight and have yourself if good shape before you undergo a

large elective operation. I believe that it can make a difference in the

anesthetics, and I know that it can reduce any pain that results fom extra loads

on your joints and discs.

>

> I guess I am saying that I cant really think why you wouldnt ask your local

internist or PCP if they cant arrange for you to work with a dietitian and start

a weight loss program in the hopes that it does help. Even if its only 10% of

the problem with your back, extra weight is probably not helping you move around

agily anyway. I also think it helps to realize that there probably is not going

to be just 1 fix that is going to get all the pain at our stage in life. Its a

process that seems, for many of us, to have many components: surgery, pain meds,

exercise or strength work, weight management and often psychological care. Each

part of the care comes together to significantly improve or heal a part of the

patient. The sum total is often quite good....but its not perfect.

>

> Think of it as being on a journey, you know the destination, but also know

that you will probably not be taking the shortest route there.

>

> Take Care, Cam

>

[Guest guest]

,

I hope you werent offended in any way by my answer to your re: weight. I was

just trying to clarify my view that with all the " out of control nautre " of what

is going on with our spines....the best we can do for ourselves is control the

things that we can:

We can choose to be evaluated by excellent surgeons with the specific skills

that we require.

We can choose to have surgery if we determine that it is in our best interests.

We can choose the timing of any such surgery.

We can present our bodies for surgery at the very best weight and health

possible.

We can rearrange our homes so that they meet our safety and comfort needs,

before and after surgery.

We can prepare and gird ourselves mentally and emotionally for the stresses and

emotions of scoliosis at this point in our lives.

I suppose there is more that we CAN do...but I am sure you gt my point....focus

on the things that you are able to do...and try not to go crazy about the things

that you cant.

If you havent seen it already, I would recommend you go to the file section and

read the work of Mina. She was a patient like ourselves...although

never had great days from her earlier surgery...and she really struggled to find

information back when the doctors were not all that clear, or forthcoming about

what was going on. Most of us seem many parts of ourselves in her writing.

Take Care, Cam

[Guest guest]

Noreen,

I get what seem like migraine headaches that are directly related to muscle knots in my lower neck/shoulder area. I was going to a physical therapist for my lower back and mentioned these headaches to her. She started working on massaging those muscles and there were times when she would be working on a muscle and it would immediately bring on the headaches - they were like someone hitting me in the side of the head with a hammer. Anyway, her massage treatment really helped and now I use a tennis ball between the wall and my shoulder muscles to help release the tension there. It does help. The therapist told me that my shoulders are tight from them having to do more because of my fusions. I also seem to "shrug" up my shoulders a lot for some reason, especially when working on the computer.

Jeanne

[ ] Re: Hello to group

Hi Cam,Thank you for all of your helpful words. I do realise everyone here is a patient also, I am not expecting medical advice, but I do think it's helpful to hear what has or has not worked for others.It definately is a shock to realise that the fusion I thought had "solved" my scoliosis problems may now be creating more problems!I feel, as you do, that in retrospect I have been lucky with almost 30 years relatively pain free. I definately am looking into seeing one of the specialist doctors for my symptoms. It's kind of discouraging that there aren't more doctors familiar with the revision surgery, or more experienced. If there are as many people who will need revisions as I've been reading, there will have to be a lot more doctors available!I am also realising that I need to work on my weight issues as well. I've always been an emotional eater, and used food to make me "feel better" for a short time while dealing with difficult situations in my life. I've realised for a while that losing weight would probobly help with my back pain, but now I feel it is more urgent! Sometimes it's even more scary to think of facing life without this "crutch", but it has to be done.I agree the process has many components, and this is a big one for me. I have a lot of the same "presenting symptoms" as you did, has surgery helped you with those? Last night my husband tried to help me stand up straight, but it didn't really work either.Has anyone else gotten migraine headaches from their neck being crooked? I've noticed this symptom since last summer as well.Take care,Noreen>> Hi Noreen,> > Welcome to the group. It is a bit of a shocker to find yourself wondering if perhaps your spine might not be all that you thought it was, huh? > > I am glad you are finding some information that may be useful to you going forward. I hope you realize that our group is made up of patients like yourself...no one is a doctor here and so we are just sharing what we have learned from our own experiences as patients. My thought, based on your questions, is that you feel like many of us did early on in the "downhill slide". Suspicious. Guessing that our earlier surgery or fusion, or the scoliosis itself, might well be the source of mounting problems.> > I think it is very difficult within the context of the current care for us older scolis to really find definitive answers...they often ending up coming simply because everything else has been ruled out. I cant tell you how many of our members have been told by their orthos (mind you...that is what orthos do....bone work!) ...that the fusion looks fine. Neurologists will be unable to determine if, where, or how soft tissue/nerve damage might play a roll in pain or dysfunction. Its frustrating.> > My "presenting symptom" was excruciating sciatic pain in the leg/buttock.....but in retrospect...it started with fairly mild tingling down in the toes and what I thought was hip arthritis or bursitis. Also. in retrospect, I was leaning forward, to a point where a friend, gently, but firmly, placed her hands on my chest and upper back to kind or reminding me to stand up. I couldnt.....but didnt connect all this together. Neither did my local ortho...a well trained hip knee + kind of guy. It really all came together for me when, like you, I was cruising the internet and followed my intuition to a site like this group. I read, and read, and read as the hair stood up on the back of my neck. I just knew that I was a classic case of flatback. > > I believe,on the continuum, I have been fairly lucky. I had 32 relatively trouble free years. I did ski and horseback ride. I did not lean forward very much, nor did I have to go searching very long to locate a top specialist who confirmed my fears, but also understood the "fix".> > I guess my best advice would be to listen to your body and try to understand what it is telling you. I cant recall a member having breast reduction or surgery for endometriosis specifically in an attempt to address low back pain, although I do recall a member having a hysterectomy several years after revision surgery when it was determined that fibroids might be the major source of discomfort she was feeling in the lower pelvic area.> > I think you will find that you are best served if you find and consult with at least 2 highly experienced surgeons who deal with post-Harrington rod patients. I wouldnt rest until I had seen at least one of the names mentioned here often, even if you do end up seeing someone where you did your original surgery. At your stage of the game....experience counts....and sadly there are just not tons of surgeons who work with our population.> > As to the question of weight, I think I would say only that it may or not be an issue with regard to a surgeon choosing to perform surgery, but it may also be a barr from performing an anterior procedure, which is often done in revision. Regardless of the "can they do surgery" question, I think it is generally well agreed upon that there are many excellent reasons to work on reducing your body weight and have yourself if good shape before you undergo a large elective operation. I believe that it can make a difference in the anesthetics, and I know that it can reduce any pain that results fom extra loads on your joints and discs.> > I guess I am saying that I cant really think why you wouldnt ask your local internist or PCP if they cant arrange for you to work with a dietitian and start a weight loss program in the hopes that it does help. Even if its only 10% of the problem with your back, extra weight is probably not helping you move around agily anyway. I also think it helps to realize that there probably is not going to be just 1 fix that is going to get all the pain at our stage in life. Its a process that seems, for many of us, to have many components: surgery, pain meds, exercise or strength work, weight management and often psychological care. Each part of the care comes together to significantly improve or heal a part of the patient. The sum total is often quite good....but its not perfect.> > Think of it as being on a journey, you know the destination, but also know that you will probably not be taking the shortest route there.> > Take Care, Cam>

[Guest guest]

Hi Cam,

No I wasn't at all offended. Controlling the things we can certainly makes a

lot of sense!

I just thought perhaps I'm not the only person who has used food to soothe

themselves during difficult times. Having these back issues has " forced " me to

confront my food issues, and sometimes it seems like just " one more thing " I

have to deal with.

However I think staying positive is great and very important! And the best

thing we can do for ourselves with any issues we face is focus on that and

controlling what we can.

Noreen

>

> ,

>

> I hope you werent offended in any way by my answer to your re: weight. I was

just trying to clarify my view that with all the " out of control nautre " of what

is going on with our spines....the best we can do for ourselves is control the

things that we can:

>

> We can choose to be evaluated by excellent surgeons with the specific skills

that we require.

>

> We can choose to have surgery if we determine that it is in our best

interests.

>

> We can choose the timing of any such surgery.

>

> We can present our bodies for surgery at the very best weight and health

possible.

>

> We can rearrange our homes so that they meet our safety and comfort needs,

before and after surgery.

>

> We can prepare and gird ourselves mentally and emotionally for the stresses

and emotions of scoliosis at this point in our lives.

>

> I suppose there is more that we CAN do...but I am sure you gt my

point....focus on the things that you are able to do...and try not to go crazy

about the things that you cant.

>

> If you havent seen it already, I would recommend you go to the file section

and read the work of Mina. She was a patient like ourselves...although

never had great days from her earlier surgery...and she really struggled to find

information back when the doctors were not all that clear, or forthcoming about

what was going on. Most of us seem many parts of ourselves in her writing.

>

> Take Care, Cam

>

[Guest guest]

Hi Jeanne,

That makes sense about your shoulders having to " do more " because of fusions. I

have that too. Just another example of things I never thought were related to

my back that probobly are!

I am looking at going back to physical therapy. I hurt my neck last summer and

went for a few sessions, which did seem to help for a while. I also shrug my

shoulders a lot, especially right now when I am on a computer!

Also I am lucky my husband is good at giving neck and lower back massages almost

daily

Noreen

> >

> > Hi Noreen,

> >

> > Welcome to the group. It is a bit of a shocker to find yourself wondering

if perhaps your spine might not be all that you thought it was, huh?

> >

> > I am glad you are finding some information that may be useful to you going

forward. I hope you realize that our group is made up of patients like

yourself...no one is a doctor here and so we are just sharing what we have

learned from our own experiences as patients. My thought, based on your

questions, is that you feel like many of us did early on in the " downhill

slide " . Suspicious. Guessing that our earlier surgery or fusion, or the

scoliosis itself, might well be the source of mounting problems.

> >

> > I think it is very difficult within the context of the current care for us

older scolis to really find definitive answers...they often ending up coming

simply because everything else has been ruled out. I cant tell you how many of

our members have been told by their orthos (mind you...that is what orthos

do....bone work!) ...that the fusion looks fine. Neurologists will be unable to

determine if, where, or how soft tissue/nerve damage might play a roll in pain

or dysfunction. Its frustrating.

> >

> > My " presenting symptom " was excruciating sciatic pain in the

leg/buttock.....but in retrospect...it started with fairly mild tingling down in

the toes and what I thought was hip arthritis or bursitis. Also. in retrospect,

I was leaning forward, to a point where a friend, gently, but firmly, placed her

hands on my chest and upper back to kind or reminding me to stand up. I

couldnt.....but didnt connect all this together. Neither did my local ortho...a

well trained hip knee + kind of guy. It really all came together for me when,

like you, I was cruising the internet and followed my intuition to a site like

this group. I read, and read, and read as the hair stood up on the back of my

neck. I just knew that I was a classic case of flatback.

> >

> > I believe,on the continuum, I have been fairly lucky. I had 32 relatively

trouble free years. I did ski and horseback ride. I did not lean forward very

much, nor did I have to go searching very long to locate a top specialist who

confirmed my fears, but also understood the " fix " .

> >

> > I guess my best advice would be to listen to your body and try to

understand what it is telling you. I cant recall a member having breast

reduction or surgery for endometriosis specifically in an attempt to address low

back pain, although I do recall a member having a hysterectomy several years

after revision surgery when it was determined that fibroids might be the major

source of discomfort she was feeling in the lower pelvic area.

> >

> > I think you will find that you are best served if you find and consult

with at least 2 highly experienced surgeons who deal with post-Harrington rod

patients. I wouldnt rest until I had seen at least one of the names mentioned

here often, even if you do end up seeing someone where you did your original

surgery. At your stage of the game....experience counts....and sadly there are

just not tons of surgeons who work with our population.

> >

> > As to the question of weight, I think I would say only that it may or not

be an issue with regard to a surgeon choosing to perform surgery, but it may

also be a barr from performing an anterior procedure, which is often done in

revision. Regardless of the " can they do surgery " question, I think it is

generally well agreed upon that there are many excellent reasons to work on

reducing your body weight and have yourself if good shape before you undergo a

large elective operation. I believe that it can make a difference in the

anesthetics, and I know that it can reduce any pain that results fom extra loads

on your joints and discs.

> >

> > I guess I am saying that I cant really think why you wouldnt ask your

local internist or PCP if they cant arrange for you to work with a dietitian and

start a weight loss program in the hopes that it does help. Even if its only 10%

of the problem with your back, extra weight is probably not helping you move

around agily anyway. I also think it helps to realize that there probably is not

going to be just 1 fix that is going to get all the pain at our stage in life.

Its a process that seems, for many of us, to have many components: surgery, pain

meds, exercise or strength work, weight management and often psychological care.

Each part of the care comes together to significantly improve or heal a part of

the patient. The sum total is often quite good....but its not perfect.

> >

> > Think of it as being on a journey, you know the destination, but also know

that you will probably not be taking the shortest route there.

> >

> > Take Care, Cam

> >

>