Need Advice

March 2, 2006

could be the stopping smoking...but also...stay OFF those scales for a few days.. I go days on end without losing anything...but I AM losing inches...muscle weighs 40% MORE than fat...so just cuz it doesn't show on that scale, doesn't mean it isn't happening for you. Once I stopped weighing myself every day...it seemed I lost more in "chunks"...my clothes tell the story much better than the scales. I am 31 lbs from my goal...wow...it has only been 5 mos...the reality is, I AM gonna make my goal this time around...and I never could have without my band.BIG HUGS, AND GOD'S BLESSINGSDawnita MayLowpass, Oregon10/05/05 dob "Iraida" 209/166/135 5ft 3inches See Mylatest photos at: http://dawnita1961.myphotoalbum.com/

March 2, 2006

Hey Becky, I don't know about the changes that quitting smoking may do but I am sure it is a factor in the process. Your body has gone through many changes with quitting smoking and the surgery, so it may just take some time to play catch up. Are you still eating small quantities? I know if I make smaller meals I seem to do pretty good. I've been walking alot as well. I think I remember some saying that there may be a plateau and possible some regain before the first fill. What may be needed is a fill sometime in the future. You may want to try changing up the things you eat perhaps, I know I need to eat lighter for the evenings. Example: I came home from class about 7:30 and ate dinner alittle after 8pm, I had some some chili beans smashed up, very little cheese for taste and an avocado. So, I think I ate alittle too heavy for dinner and too late in the evening. I know with a busy schedule it sometimes can get that way, but I know I need to put more effort into planning my meals wisely especially on my school nites. It's going to be a process of rethinking on my behalf and getting my act together to plan things before hand and not rely on just coming home and whipping something up quickly and then making it not kosher to the diet plan. So, just thought I'd let you know that we're all in the same boat....rowing towards the same goal. I wish you all the best and you know I am cheering you on. Please do not get down on yourself, after the fills things will start to pick up, this first step is just to get us used to the band and get ourselves in gear for what the future brings to us, it's a learning process and even though we've heard all the advice we still need to pave our own way. You'll see that in time...which I know many of us want this gut to be gone immediately but in time we will see real progress. One of the reasons for the band was to lose the weight at a safe pace, so sometimes we just have to go with that pace. Keep your chin up and keep smiling you're going to do well....you are already on a great start with sticking with the plan and quitting smoking. I'm proud of you!

Smile!

Kelli

>> I love to read all of your posts,they really help me to keep going. I> am sorry that I seem to be the "negitive one" in this group. I'm not> really!!!!!!! I feel very positive but just a bit slow to succeed. I> have been trying to figure out why I am not loosing and was wondering> if anyone might have an opinion on an idea I have as to why I don't> seem to be loosing. I quit smoking 2 weeks before I was banded and I> know that your metabilism really slows down after you quit. I am> sticking pretty much to the food program, walking everyday, making> sure that I get enough protein etc., and I am not only NOT LOOSING but> I seem to go up and down the same 2 lbs every other day. Could my body> still be getting over that fact that I don't smoke anymore and my> metabolisn just isn't working for me yet?? Any thoughts??> Becky>

June 27, 2006

Terri,

So sorry to hear about your story with your recent events. That must be disheartening. My weight was up to 233 a few years ago, and I am now down to 193. I lost most of that through the Zone diet that my original H-rod doctor told me about. But somehow I was not able to stay below 200 until just recently. That's because another doctor of mine told me about the importance of pH balancing in the body, which is now helping tremendously. This was actually a urologist who told me about it. I have had two kidney stones removed in the past six years, and the most recent one was about eight months ago. So my urologist is following me to try to prevent future kidney stones.

Anyway, he recently put me on a medication to balance my pH, which he says will prevent kidney stones. Well, after doing some research, I learned that the pH in the body can be controlled by diet. You can google the words "ph balancing" or something similar, and find out all kinds of information about it. One website I read said that out of all the thousands of diseases out there, they all basically boil down to one disease, and that is acidosis (the pH being too low, or too acidic).

Seems that when you balance your pH, you balance your weight and all kinds of things. I also found out about pH testing strips, which can be purchased at most health food stores. When I receive my disability check again next month, I am planning to buy some of those, so that I can monitor my pH level myself.

They say that a normal pH is about a 7, with the range of possibilities being from 0 to 14. I have been about a 5 for a long time, according to my lab results. They say that most people with cancer are about a 4. And it goes in a logrhythm fashion, so a 5 (where I am at) is 10 times more acidic than a 6, and 100 times more acidic than a 7. My body is 100 times more acidic than it should be!

The acidity/alkanity is affected by the foods we eat. Carbs and meats make it go more acidic (to a lower number), while fruits and veggies usually cause it to go to a higher number, meaning more alkaline. Most people in America are too acidic, they say.

Anyway, I could go on and on, but I just wish someone had told me about pH balancing a long time ago. It sure seems to be helping me...with my weight and everything!

Good luck!

~Carolyn

In a message dated 6/27/06 12:22:50 P.M. Central Daylight Time, blueiiredhair@... writes:

Last week I met with Dr. LaGrone regarding revision surgery. I had talked with the pre-cert nurse, prior to the trip, and she sounded un-enthused about my insurance (I know it's lousy). I brought many films and radiology reports. Dr. LaGrone said he wouldn't attempt such a delicate and extensive surgery on me because of my weight (just over 250). He said my flatback syndrome wasn't that bad anyway and was pretty much finished with the discussion on that note. I've been told (prior to this meeting) that my back was as flat as it could be. I have to lean on things all the time/craning neck problem - I'm not sure how he figures that my flatback isn't that bad. Not that I'm wanting revision surgery but I would like to have that rod out - but he didn't even mention that.???After he stopped talking, I spoke up to describe all the pain I suffer and ask how was it possible for me to expercise? I'm barely able to take a shower in the evenings and have had to skip those sometimes. I have a 7 yr old son, I try to keep going but the pain is unbearable. Fortunately, I have found a good pain mgt doctor but he wants to start reducing my meds. How will I function then?Then Dr. LaGrone looked at my xrays again - the ones he took - and said L4,5 & 6 are very unstable and have stenosis pretty bad. He wants to fuse those to give me some stability so that I can then lose weight. He wasn't rude about how he said these things but I was hurt and concerned with his focus so much on my weight and not very much on discussing spinal issues with me. I feel almost invalid because I'm overweight. I know my weight hurts my spine. Is it true that pain medicine slows down your metabolism alot??? So, the last thing he tells me is that in the long run I will have to be fused to the sacrum. I'm depressed. I'm also considering not having the fusion and maybe wearing some form of flexible support until I lose wieght then wear a brace during the day. I could maybe take it off for a shower and sleeping. I would love some comments/advice/support from any and all on my email. Thank you very much.Terri

June 28, 2006

Hi Terri,

I am pretty new to the whole flatback thing as I just found out that

flatback existed in February after years of trying to figure out why

I was always bent forward.

I know that depressed feeling of knowing it will never go away.

While I am not overweight I can understand the pain of having a busy

day. I can say that when you do move more it does hurt that first

few days but if you stay at a consistant level of activity your back

does get a little better. I will either walk around Target using the

cart for support or go to the mall (with my cane)at least 4 times a

week for about 2 hours of slow walking (really it is more like

medically necessary shopping according to my husband :)hee hee). If

I skip a few days I really feel it when I try to do day to day

activities.

I have a 9 and 5 year old and know how taxing kids can be especially

with a bad back. I am getting fused the rest of the way next month.

I see my DR tomorrow for a more indepth explination of my surgery

and to ask a ton of questions.

I hope you get to feeling better. My friend lost well over 100

pounds through Weight Watchers. She said there is a way to do it

with out much activity but you don't get to eat as much so she went

to curves 3 days a week to get more daily points. She really likes

the support of the meetings.

I clean and do gardening while my pain meds are in full effect that

way I can be comfortable and get things done. I only take my pain

meds when I am at home because I won't drive while they are in my

system. Most of the time I walk around in discomfort but I know that

it would be 10 times worse if I did no walking at all.

Keep us posted on how you are feeling.

Jolynn

>

> Last week I met with Dr. LaGrone regarding revision

> surgery. I had talked with the pre-cert nurse, prior to the trip,

> and she sounded un-enthused about my insurance (I know it's

lousy).

> I brought many films and radiology reports. Dr. LaGrone said he

> wouldn't attempt such a delicate and extensive surgery on me

because

> of my weight (just over 250). He said my flatback syndrome wasn't

> that bad anyway and was pretty much finished with the discussion

on

> that note. I've been told (prior to this meeting) that my back

was

> as flat as it could be. I have to lean on things all the

> time/craning neck problem - I'm not sure how he figures that my

> flatback isn't that bad. Not that I'm wanting revision surgery

but

> I would like to have that rod out - but he didn't even mention

> that.???

>

> After he stopped talking, I spoke up to describe all the pain I

> suffer and ask how was it possible for me to expercise? I'm

barely

> able to take a shower in the evenings and have had to skip those

> sometimes. I have a 7 yr old son, I try to keep going but the

pain

> is unbearable. Fortunately, I have found a good pain mgt doctor

but

> he wants to start reducing my meds. How will I function then?

>

> Then Dr. LaGrone looked at my xrays again - the ones he took - and

> said L4,5 & 6 are very unstable and have stenosis pretty bad. He

> wants to fuse those to give me some stability so that I can then

> lose weight. He wasn't rude about how he said these things but I

> was hurt and concerned with his focus so much on my weight and not

> very much on discussing spinal issues with me. I feel almost

> invalid because I'm overweight. I know my weight hurts my spine.

> Is it true that pain medicine slows down your metabolism alot???

> So, the last thing he tells me is that in the long run I will have

> to be fused to the sacrum. I'm depressed.

>

> I'm also considering not having the fusion and maybe wearing some

> form of flexible support until I lose wieght then wear a brace

> during the day. I could maybe take it off for a shower and

> sleeping. I would love some comments/advice/support from any and

> all on my email. Thank you very much.

>

> Terri

>

June 28, 2006

Thank you so much for your response! I have no support thru family

or friends (ha!!??). I'm here in Biloxi, MS and my closest and

oldest friend moved away after Hurricane Katrina - that crushed me!

So it was wonderful to read what you had to say. Please, email me

when you meet with your doctor, if you will. This fusion " the rest

of the way " what degree of handicap does that mean? I know I'm

facing that in my future and it makes me sick at heart. I would

love to hear from anyone who has been fused to the sacrum who could

tell me details of the disability that follows - the day to day

stuff. I'm so sorry to ask such painful questions but I need to

know. I would also like to know at what age does this type of

surgery occur - in the late 50's? I'm 41 now and wondering how long

I have. I'm wondering what degree of disability, if any, that I

will have after I have these three vertebrae fused (L4,5 & 6).

Jolynn, you are right, I need to exercise more and you've given me

some very good suggestions. Ideas I can accomplish. I've been such

a recluse for so long - home feels safe when you don't know when

pain is going to strike. And when it does - home has all your props

to make you feel better. That and I have a touch of social anxiety

to boot.

Thanks again. I look forward to hearing from you.

Terri

> >

> > Last week I met with Dr. LaGrone regarding revision

> > surgery. I had talked with the pre-cert nurse, prior to the

trip,

> > and she sounded un-enthused about my insurance (I know it's

> lousy).

> > I brought many films and radiology reports. Dr. LaGrone said he

> > wouldn't attempt such a delicate and extensive surgery on me

> because

> > of my weight (just over 250). He said my flatback syndrome

wasn't

> > that bad anyway and was pretty much finished with the discussion

> on

> > that note. I've been told (prior to this meeting) that my back

> was

> > as flat as it could be. I have to lean on things all the

> > time/craning neck problem - I'm not sure how he figures that my

> > flatback isn't that bad. Not that I'm wanting revision surgery

> but

> > I would like to have that rod out - but he didn't even mention

> > that.???

> >

> > After he stopped talking, I spoke up to describe all the pain I

> > suffer and ask how was it possible for me to expercise? I'm

> barely

> > able to take a shower in the evenings and have had to skip those

> > sometimes. I have a 7 yr old son, I try to keep going but the

> pain

> > is unbearable. Fortunately, I have found a good pain mgt doctor

> but

> > he wants to start reducing my meds. How will I function then?

> >

> > Then Dr. LaGrone looked at my xrays again - the ones he took -

and

> > said L4,5 & 6 are very unstable and have stenosis pretty bad.

He

> > wants to fuse those to give me some stability so that I can then

> > lose weight. He wasn't rude about how he said these things but

I

> > was hurt and concerned with his focus so much on my weight and

not

> > very much on discussing spinal issues with me. I feel almost

> > invalid because I'm overweight. I know my weight hurts my

spine.

> > Is it true that pain medicine slows down your metabolism

alot???

> > So, the last thing he tells me is that in the long run I will

have

> > to be fused to the sacrum. I'm depressed.

> >

> > I'm also considering not having the fusion and maybe wearing

some

> > form of flexible support until I lose wieght then wear a brace

> > during the day. I could maybe take it off for a shower and

> > sleeping. I would love some comments/advice/support from any

and

> > all on my email. Thank you very much.

> >

> > Terri

> >

>

June 28, 2006

Carolyn, I'm so glad you mentioned the PH info. I will definitely

check into that. You've given me some hope.

Thank you so much!

Terri

June 28, 2006

Hi Terri,

I saw your post and thought I'd jump in...I had surgery for a 56

degree C curve in 1974, developed Flat Back and stenosis, etc. over

the years and finally had revision surgery in New York in 2003 (when

I was 47). Dr. Boachie performed the surgery. My fusion was

extensive – from my tailbone to between my shoulder blades.

Because most of my spine was fused - and only my upper back was not

fused - my uppermost back, neck and shoulders bear the brunt of all

my physical activity. Consequently I've had a lot of pain in those

areas.

I also have had general muscle cramping along the side of my back

that used to be my 'hump,' and down my legs - from having had my

spine repositioned during the revision procedure.

I tried many episodes of physical therapy (ultrasound, mild massage,

heat packs, simple exercise), but none was really helpful. I went to

warm-water (90 degrees) pool therapy twice a week and that was

soothing and very helpful at first. In fact I'd recommend that

therapy if your insurance covers it.

But I was still getting cramps and muscle spasms. Ultimately I found

a Pilates instructor who had had three spinal surgeries of her own –

and she had modified the Pilates exercises to suit her own

limitations so that she knew exactly what I could and could not

tolerate with my own fusion. I've been seeing her for a year – twice

a week – and I consider Pilates a miracle. I no longer have muscle

spasms in my back and legs, and I have less pain (sometimes none!)

in my upper back and shoulders.

Private Pilates instruction is expensive and so not for everyone.

But if you can afford to pay about $300 over several weeks, I would

recommend finding a Pilates Reformer instructor (I can help you with

finding one) and learning the basics during a few sessions. Then,

you can buy an ultra-cheap reformer for your home and do it on your

own. The exercises are stress-less and stretch you out without

hurting your back. It's actually fun, too - and I hate exercising!

It's been three years since my revision and I'm managing pretty

well. I do take Ultram or Ibuprophen several times a week as needed,

and I use hot baths and a heating pad as needed. I tend to do worse

in the winter months when my whole skeleton/muscle system seems to

tighten up (even though I exercise as regularly as I do in the

warmer months).

I hope this information helps you to see that revision surgery,

though NOT FUN, is not the end of your life as you know it. You'll

definitely have to make adjustments as your body will work

differently (for example, you won't be able to bend from the waist -

only from your hips), but you probably will still be able to do the

things you like to do. It's a long, sometimes scary, sometimes

painful process, but it gets better and pretty quickly.

Best Wishes,

Andy Stanton

Concord MA

> > >

> > > Last week I met with Dr. LaGrone regarding revision

> > > surgery. I had talked with the pre-cert nurse, prior to the

> trip,

> > > and she sounded un-enthused about my insurance (I know it's

> > lousy).

> > > I brought many films and radiology reports. Dr. LaGrone said

he

> > > wouldn't attempt such a delicate and extensive surgery on me

> > because

> > > of my weight (just over 250). He said my flatback syndrome

> wasn't

> > > that bad anyway and was pretty much finished with the

discussion

> > on

> > > that note. I've been told (prior to this meeting) that my

back

> > was

> > > as flat as it could be. I have to lean on things all the

> > > time/craning neck problem - I'm not sure how he figures that

my

> > > flatback isn't that bad. Not that I'm wanting revision

surgery

> > but

> > > I would like to have that rod out - but he didn't even mention

> > > that.???

> > >

> > > After he stopped talking, I spoke up to describe all the pain

I

> > > suffer and ask how was it possible for me to expercise? I'm

> > barely

> > > able to take a shower in the evenings and have had to skip

those

> > > sometimes. I have a 7 yr old son, I try to keep going but the

> > pain

> > > is unbearable. Fortunately, I have found a good pain mgt

doctor

> > but

> > > he wants to start reducing my meds. How will I function then?

> > >

> > > Then Dr. LaGrone looked at my xrays again - the ones he took -

> and

> > > said L4,5 & 6 are very unstable and have stenosis pretty bad.

> He

> > > wants to fuse those to give me some stability so that I can

then

> > > lose weight. He wasn't rude about how he said these things

but

> I

> > > was hurt and concerned with his focus so much on my weight and

> not

> > > very much on discussing spinal issues with me. I feel almost

> > > invalid because I'm overweight. I know my weight hurts my

> spine.

> > > Is it true that pain medicine slows down your metabolism

> alot???

> > > So, the last thing he tells me is that in the long run I will

> have

> > > to be fused to the sacrum. I'm depressed.

> > >

> > > I'm also considering not having the fusion and maybe wearing

> some

> > > form of flexible support until I lose wieght then wear a brace

> > > during the day. I could maybe take it off for a shower and

> > > sleeping. I would love some comments/advice/support from any

> and

> > > all on my email. Thank you very much.

> > >

> > > Terri

> > >

> >

>

June 29, 2006

Hi Terri,

Fusion to the sacrum does not necessarily mean that you will be

handicapped. I was fused from T5 to the sacrum at age 17 and did

pretty well for a while after my surgery, working full time for many

years and having two kids. I think that if the fusion had been done

with modern techniques to keep the spine in balance (instead of the

old style fusion that wiped out the lordosis) and if my hips hadn't

also been deformed from birth and prone to early arthritis, that I

would have continued to do well for many more years. As it was,

things started to go downhill for me at about age 30, and I'm 46 now

and looking at having a revision to get rid of my Harrington Rods and

insert some lumbar lordosis.

I'm sorry to hear that your appt. with Dr. LaGrone did not go as you'd

hoped. Will you be able to consult with another doctor? It might be

a good idea to write to Dr. LaGrone's office and request a copy of

the medical report generated from the office visit you had with him.

It might explain what he meant when he said your flatback was not too bad.

Good luck with losing weight and exercising. I find it very hard to

keep up my motivation for exercising, but know that being as active as

possible (given my limitations) does help both my mind and body. If

you ever need an exercise buddy for encouragement, don't hesitate to

email me directly. Sometimes it helps to compare notes with someone

every day to keep up the motivation. That's a bummer your friend

moved away. Katrina disrupted so many lives. I have an internet

friend from Biloxi who sent me some horrific pictures. I hope

conditions will continue to improve for all of you there.

As far as eating more healthily, I think the key is to somehow muster

the willpower to not buy the junk food in the first place. If it's in

the house, I'll definitely eat it. If I force myself to buy fruits

and veggies instead, then I have a tendency to eat them when hungry or

stressed, which is better than my usual bags of cookies!

(I have a bit of social anxiety, too. Would you believe I have the

disgusting habit of biting my fingernails when I'm stressed??)

Best wishes to you, Terri,

loriann

>

> Thank you so much for your response! I have no support thru family

> or friends (ha!!??). I'm here in Biloxi, MS and my closest and

> oldest friend moved away after Hurricane Katrina - that crushed me!

> So it was wonderful to read what you had to say. Please, email me

> when you meet with your doctor, if you will. This fusion " the rest

> of the way " what degree of handicap does that mean? I know I'm

> facing that in my future and it makes me sick at heart. I would

> love to hear from anyone who has been fused to the sacrum who could

> tell me details of the disability that follows - the day to day

> stuff. I'm so sorry to ask such painful questions but I need to

> know. I would also like to know at what age does this type of

> surgery occur - in the late 50's? I'm 41 now and wondering how long

> I have. I'm wondering what degree of disability, if any, that I

> will have after I have these three vertebrae fused (L4,5 & 6).

>

> Jolynn, you are right, I need to exercise more and you've given me

> some very good suggestions. Ideas I can accomplish. I've been such

> a recluse for so long - home feels safe when you don't know when

> pain is going to strike. And when it does - home has all your props

> to make you feel better. That and I have a touch of social anxiety

> to boot.

>

> Thanks again. I look forward to hearing from you.

>

> Terri

June 29, 2006

Jolynn,

Sorry this might be a little late, but just wanted to wish you good

luck with your appointment today!! Hope it goes well, and that you

will let us know,

loriann

>

> Hi Terri,

>

> I am pretty new to the whole flatback thing as I just found out that

> flatback existed in February after years of trying to figure out why

> I was always bent forward.

>

> I know that depressed feeling of knowing it will never go away.

> While I am not overweight I can understand the pain of having a busy

> day. I can say that when you do move more it does hurt that first

> few days but if you stay at a consistant level of activity your back

> does get a little better. I will either walk around Target using the

> cart for support or go to the mall (with my cane)at least 4 times a

> week for about 2 hours of slow walking (really it is more like

> medically necessary shopping according to my husband :)hee hee). If

> I skip a few days I really feel it when I try to do day to day

> activities.

>

> I have a 9 and 5 year old and know how taxing kids can be especially

> with a bad back. I am getting fused the rest of the way next month.

> I see my DR tomorrow for a more indepth explination of my surgery

> and to ask a ton of questions.

>

> I hope you get to feeling better. My friend lost well over 100

> pounds through Weight Watchers. She said there is a way to do it

> with out much activity but you don't get to eat as much so she went

> to curves 3 days a week to get more daily points. She really likes

> the support of the meetings.

>

> I clean and do gardening while my pain meds are in full effect that

> way I can be comfortable and get things done. I only take my pain

> meds when I am at home because I won't drive while they are in my

> system. Most of the time I walk around in discomfort but I know that

> it would be 10 times worse if I did no walking at all.

>

> Keep us posted on how you are feeling.

>

> Jolynn

June 29, 2006

I have no family near by either (eacept my husband and children).

Even if I did they are not the supportive family of my dreams as

they all seem to have their life in crisis. I am only 31 and having

the surgery because I am just at the point where I am avoiding the

things I really enjo. I feel that my quality of life is at stake and

I am living near Boston at the moment. It looks like a good time for

me for the surgery. I also have a daughter with scoliosis and would

shutter to think of how chaotic life would be with 2 spinal fusions

going on so I'll take the leap first. I also don't have much

mobility to lose. I do have friends but hate to rely on them heavily

because the pitty bothers me.

We hired a nanny and cleaning lady for the time I am recovering.

Jolynn

> > >

> > > Last week I met with Dr. LaGrone regarding revision

> > > surgery. I had talked with the pre-cert nurse, prior to the

> trip,

> > > and she sounded un-enthused about my insurance (I know it's

> > lousy).

> > > I brought many films and radiology reports. Dr. LaGrone said

he

> > > wouldn't attempt such a delicate and extensive surgery on me

> > because

> > > of my weight (just over 250). He said my flatback syndrome

> wasn't

> > > that bad anyway and was pretty much finished with the

discussion

> > on

> > > that note. I've been told (prior to this meeting) that my

back

> > was

> > > as flat as it could be. I have to lean on things all the

> > > time/craning neck problem - I'm not sure how he figures that

my

> > > flatback isn't that bad. Not that I'm wanting revision

surgery

> > but

> > > I would like to have that rod out - but he didn't even mention

> > > that.???

> > >

> > > After he stopped talking, I spoke up to describe all the pain

I

> > > suffer and ask how was it possible for me to expercise? I'm

> > barely

> > > able to take a shower in the evenings and have had to skip

those

> > > sometimes. I have a 7 yr old son, I try to keep going but the

> > pain

> > > is unbearable. Fortunately, I have found a good pain mgt

doctor

> > but

> > > he wants to start reducing my meds. How will I function then?

> > >

> > > Then Dr. LaGrone looked at my xrays again - the ones he took -

> and

> > > said L4,5 & 6 are very unstable and have stenosis pretty bad.

> He

> > > wants to fuse those to give me some stability so that I can

then

> > > lose weight. He wasn't rude about how he said these things

but

> I

> > > was hurt and concerned with his focus so much on my weight and

> not

> > > very much on discussing spinal issues with me. I feel almost

> > > invalid because I'm overweight. I know my weight hurts my

> spine.

> > > Is it true that pain medicine slows down your metabolism

> alot???

> > > So, the last thing he tells me is that in the long run I will

> have

> > > to be fused to the sacrum. I'm depressed.

> > >

> > > I'm also considering not having the fusion and maybe wearing

> some

> > > form of flexible support until I lose wieght then wear a brace

> > > during the day. I could maybe take it off for a shower and

> > > sleeping. I would love some comments/advice/support from any

> and

> > > all on my email. Thank you very much.

> > >

> > > Terri

> > >

> >

>

June 30, 2006

Hi Jolynn,

I think it's great that you hired a nanny and a cleaning lady for

your recovery period! I know that they will be a tremendous help.

It's terrific that you're so organized and are preparing so

carefully for your down-time.

I had hired a cleaning lady, and I also hired a woman to bring a few

home-cooked meals every week, that my husband could heat up for us.

My husband also brought in take-out (pizza, Thai, etc) but I really

just wanted home-cooked 'comfort' meals most of the time. He was

working a lot then (3 years ago) so he had no energy to do any

cooking himself.

If you think you might want that too, and if you have no one to cook

for you, you might contact a local church or temple and see if

anyone would like to help you out. Or you can put an ad on

boston.craigslist.org - that's what I did. The woman I hired was

very inexpensive.

I'm sure you've said, but please tell me again - who is doing your

surgery and do you have a date?

Andy

> > > >

> > > > Last week I met with Dr. LaGrone regarding revision

> > > > surgery. I had talked with the pre-cert nurse, prior to the

> > trip,

> > > > and she sounded un-enthused about my insurance (I know it's

> > > lousy).

> > > > I brought many films and radiology reports. Dr. LaGrone

said

> he

> > > > wouldn't attempt such a delicate and extensive surgery on me

> > > because

> > > > of my weight (just over 250). He said my flatback syndrome

> > wasn't

> > > > that bad anyway and was pretty much finished with the

> discussion

> > > on

> > > > that note. I've been told (prior to this meeting) that my

> back

> > > was

> > > > as flat as it could be. I have to lean on things all the

> > > > time/craning neck problem - I'm not sure how he figures that

> my

> > > > flatback isn't that bad. Not that I'm wanting revision

> surgery

> > > but

> > > > I would like to have that rod out - but he didn't even

mention

> > > > that.???

> > > >

> > > > After he stopped talking, I spoke up to describe all the

pain

> I

> > > > suffer and ask how was it possible for me to expercise? I'm

> > > barely

> > > > able to take a shower in the evenings and have had to skip

> those

> > > > sometimes. I have a 7 yr old son, I try to keep going but

the

> > > pain

> > > > is unbearable. Fortunately, I have found a good pain mgt

> doctor

> > > but

> > > > he wants to start reducing my meds. How will I function

then?

> > > >

> > > > Then Dr. LaGrone looked at my xrays again - the ones he

took -

> > and

> > > > said L4,5 & 6 are very unstable and have stenosis pretty

bad.

> > He

> > > > wants to fuse those to give me some stability so that I can

> then

> > > > lose weight. He wasn't rude about how he said these things

> but

> > I

> > > > was hurt and concerned with his focus so much on my weight

and

> > not

> > > > very much on discussing spinal issues with me. I feel

almost

> > > > invalid because I'm overweight. I know my weight hurts my

> > spine.

> > > > Is it true that pain medicine slows down your metabolism

> > alot???

> > > > So, the last thing he tells me is that in the long run I

will

> > have

> > > > to be fused to the sacrum. I'm depressed.

> > > >

> > > > I'm also considering not having the fusion and maybe wearing

> > some

> > > > form of flexible support until I lose wieght then wear a

brace

> > > > during the day. I could maybe take it off for a shower and

> > > > sleeping. I would love some comments/advice/support from

any

> > and

> > > > all on my email. Thank you very much.

> > > >

> > > > Terri

> > > >

> > >

> >

>

July 1, 2006

HI Andy,

I won't say who is doing the surgery because my experiences have not

been all roses and sunshine with the office staff and I may want to

complain one day. I did that on another flatback group and the

moderator told me that my complaints could not be valid because that

person did not share my experiences. I feel that it is best to just

keep that info to myself in case I need to vent further. I wouldn't

want anyone to get upset again because I didn't have to experience

they told me to.

I am having my surgeries at the end of July and the Begining of

August so we are getting pretty close. I go in for prescreening on

the 14th of this month (oh my gosh that is sooooo close).

I am making meals to go into the freezer like spagetti sauce and

meatloaf. That way we aren't living on fast food. I also have some

friends who will stop by with food (let's hope they can cook).

Jolynn

> > > > >

> > > > > Last week I met with Dr. LaGrone regarding

revision

> > > > > surgery. I had talked with the pre-cert nurse, prior to

the

> > > trip,

> > > > > and she sounded un-enthused about my insurance (I know

it's

> > > > lousy).

> > > > > I brought many films and radiology reports. Dr. LaGrone

> said

> > he

> > > > > wouldn't attempt such a delicate and extensive surgery on

me

> > > > because

> > > > > of my weight (just over 250). He said my flatback

syndrome

> > > wasn't

> > > > > that bad anyway and was pretty much finished with the

> > discussion

> > > > on

> > > > > that note. I've been told (prior to this meeting) that my

> > back

> > > > was

> > > > > as flat as it could be. I have to lean on things all the

> > > > > time/craning neck problem - I'm not sure how he figures

that

> > my

> > > > > flatback isn't that bad. Not that I'm wanting revision

> > surgery

> > > > but

> > > > > I would like to have that rod out - but he didn't even

> mention

> > > > > that.???

> > > > >

> > > > > After he stopped talking, I spoke up to describe all the

> pain

> > I

> > > > > suffer and ask how was it possible for me to expercise?

I'm

> > > > barely

> > > > > able to take a shower in the evenings and have had to skip

> > those

> > > > > sometimes. I have a 7 yr old son, I try to keep going but

> the

> > > > pain

> > > > > is unbearable. Fortunately, I have found a good pain mgt

> > doctor

> > > > but

> > > > > he wants to start reducing my meds. How will I function

> then?

> > > > >

> > > > > Then Dr. LaGrone looked at my xrays again - the ones he

> took -

> > > and

> > > > > said L4,5 & 6 are very unstable and have stenosis pretty

> bad.

> > > He

> > > > > wants to fuse those to give me some stability so that I

can

> > then

> > > > > lose weight. He wasn't rude about how he said these

things

> > but

> > > I

> > > > > was hurt and concerned with his focus so much on my weight

> and

> > > not

> > > > > very much on discussing spinal issues with me. I feel

> almost

> > > > > invalid because I'm overweight. I know my weight hurts my

> > > spine.

> > > > > Is it true that pain medicine slows down your metabolism

> > > alot???

> > > > > So, the last thing he tells me is that in the long run I

> will

> > > have

> > > > > to be fused to the sacrum. I'm depressed.

> > > > >

> > > > > I'm also considering not having the fusion and maybe

wearing

> > > some

> > > > > form of flexible support until I lose wieght then wear a

> brace

> > > > > during the day. I could maybe take it off for a shower

and

> > > > > sleeping. I would love some comments/advice/support from

> any

> > > and

> > > > > all on my email. Thank you very much.

> > > > >

> > > > > Terri

> > > > >

> > > >

> > >

> >

>

July 1, 2006

Good luck with your upcoming surgery! It sure it creeping up fast.

You are very smart for hiring a nanny & cleaning lady to help you

out for a while. Anything that you can do to alleviate physical

labor or mental stress will be a godsend I am sure! And great idea

for cooking & freezing many meals ahead of time. I haven;t had

revision surgery, but I did that when I was preg and having my 2nd

baby (didn't think of it for the first one!) and it made life so

much easier to just thaw and re-heat things. And we were able to

have a good variety of things ready without having to depend on

frozen pizzas or take-out all the time. We also had a chest freezer

and had stocked up on easy snack-type meals like hot pockets, slow-

cooker meal-in-ones, etc. And plenty of ice cream of course...

>

> Hi Jolynn,

>

> I think it's great that you hired a nanny and a cleaning lady for

> your recovery period! I know that they will be a tremendous help.

> It's terrific that you're so organized and are preparing so

> carefully for your down-time.

>

> I had hired a cleaning lady, and I also hired a woman to bring a

few

> home-cooked meals every week, that my husband could heat up for

us.

> My husband also brought in take-out (pizza, Thai, etc) but I

really

> just wanted home-cooked 'comfort' meals most of the time. He was

> working a lot then (3 years ago) so he had no energy to do any

> cooking himself.

July 2, 2006

We have 2 refridgerators and will be stocking up on those things as

well. Thank goodness for the frozen food section. I can only think

of so many homecooked things that freeze well. The cleaning people I

use will also do grocery shopping and run errands if you need them

to. I have been using them for a few months so I feel comfortable

with them.

The first lady I hired stole my pain meds. I was an idiot for

leaving her here alone.

The local library has offered to deliver and pick up books for me

too. I may hire some one to peel grapes and fan me LOL. Too bad I am

actually going to need the help to enjoy the down time.

Jolynn

> >

> > Hi Jolynn,

> >

> > I think it's great that you hired a nanny and a cleaning lady

for

> > your recovery period! I know that they will be a tremendous

help.

> > It's terrific that you're so organized and are preparing so

> > carefully for your down-time.

> >

> > I had hired a cleaning lady, and I also hired a woman to bring a

> few

> > home-cooked meals every week, that my husband could heat up for

> us.

> > My husband also brought in take-out (pizza, Thai, etc) but I

> really

> > just wanted home-cooked 'comfort' meals most of the time. He was

> > working a lot then (3 years ago) so he had no energy to do any

> > cooking himself.

>

September 15, 2006

>>i need advice cause it has been 2 weeks and i have not lost a lb. i

have lost over 50 lbs since jan. but feel sad cause i havent lost

anymore. i have had 3 fills and am sure i found my sweet spot. my dr

said i dont have to see him anymore till my year checkup in jan. but to

continue with the nurse which i am. just feeling down cause of not

losing. i am walking more maybe someone will tell me what to do?<<

Thelma,

It sounds to me, as though you are gaining some muscle! So for a few weeks,

your fat loss and muscle increase are balancing out. Perhaps change a routine

or something, trick your body into thinking something new is happening (weight

loss.)

Try not to be down about it. I have always been a chunk loser. I go for a

few weeks, with no loss, to a week with a decent loss...I have to remind myself

of that at times!

Keep seeing the nurse, so that you have that support. I am sure you will be

doing awesome in a few weeks!

agr8nthrngal/ginger207

---------------------------------

Get your own web address for just $1.99/1st yr. We'll help. Small

Business.

September 15, 2006

Hi, Thelma - We never lose at a steady or predictable rate. We will

always take brief breaks to rest and compact.

Any time we have not lost for 3-4 weeks in a row, reviwe things:

- getting good exercisse?

- enough fluids?

- meeting the protein/fiber/calcium needs?

- meeting the 1200-1500 minimum calorie goals, and not less which

will stall us out?

If all thjis is pretty good, then it's time to consider another fill.

We all need more fills periodically, as we lose. The " sweet spot " is

not forver - we all reach MANY sweet spots on the way down.

Where are you in Ohio? I was bortn and raised in Toledo..

Sandy R

at goal

>

> hi

>

> i need advice cause it has been 2 weeks and i have not lost a lb. i

> have lost over 50 lbs since jan. but feel sad cause i havent lost

> anymore. i have had 3 fills and am sure i found my sweet spot. my

dr

> said i dont have to see him anymore till my year checkup in jan.

but to

> continue with the nurse which i am. just feeling down cause of not

> losing. i am walking more maybe someone will tell me what to do?

>

> thanks

>

> thelma/ohio

>

December 8, 2006

Sophie:

My son, had a hip injection at the age of 13. His JRA (his is

actually juvenile ankylosing spondylitis) started in his hips. It was a

fairly simple procedure. An interventional radiologist at Cincinnati

Children's injected Rob's hip. It did provide dramatic improvement for

about a month, but then we had to move on to Enbrel. At the time of the

injection, he was only on Methotrexate and Sulfasalizine, and Naproxen.

It sound ridiculous that this doctor would not inject her hip. Perhaps

you need to get a referral to another doc. This one does not seem to

understand that she needs the hip injections.

I think that they are done quite commonly these days. Where do you live??

I would not wait on this to 'go away'. Her quality of life is being

affected. I think that Rob has damage in his hips because his pain has

never gone away. I think that the rheumatologists were not aggressive

enough in the beginning with Rob and he has permanent damage.

Perhaps its time to talk with your rheumy about trying another med?

and Rob 17 Spondy

On Sat, 09 Dec 2006 01:30:24 -0000 " slevindoski " <slevindoski@...>

writes:

Hi everyone,

has been on Humira since February 2006. She was still

having ankle swelling and hip pain until August when her doctor

injected her ankles. She had tendonitis in her ankle from early

October until November, and she would limp quite a bit. After the

joint injections, her bloodwork returned to normal--hemoglobin went

up, platelets went down. Things seemed better, except she kept

limping. Her doctor said that she has great range of motion in her

hips, so he ordered xrays and an MRI of the hips.

The xrays were normal but the MRI showed fluid in the hips. Her

rheumatologist does not inject hips, so he referred us to the

pediatric orthopedic doctor to schedule hip injections. My husband

took her today, and it was a five minute visit. The doctor came in,

manipulated 's hips so that she wimpered. He said that he

has only done hip injections on a kid twice in thirty years. He

said it is not commonly done and that the hips are very hard to

inject. He said has no permanent damage to the hip

cartilidge or bone and her hips look good for a " JRA kid. " He said

she should do " low-impact " exercises and he scheduled a follow-up

visit for six months.

Am I missing something here? had to drop out of dance

classes and basically can not walk long distances. Low- impact

exercises????? She has been limping terribly, and I just received

an email from her teacher that said that she noticed that LIndsay is

having a lot of trouble. I thought that any inflammation can cause

damage. Was he suggesting we wait until there is permanent damage

to do something about her hips? Are hip injections really that

uncommon?

has been a lot worse throughout the course of her illness.

She isn't having fevers, rashes, and she hasn't missed that much

school. I am just wondering how effective her medicine combo really

is if an MRI shows inflammation in her hips. I am going to have to

call her rheumatologist on Monday. I am wondering how many patients

that he has had that have had hip injections.

Anyone have a child that has had their hips injected? What do you

think about waiting for the hip problem to just go away?

Thanks for listening.

Sophie

's mom, age 6, systemic jra

December 9, 2006

I agree with you need another referral to someone else. I have not had the

hip injections but have been to a radiologist who injected my shoulder/neck with

CT guidance. It was not fun and I had to ask for a sedative to get through it

but I did go back for the 2 more ordered so it was doable. I have had my back

injected by an anesthiologist. Perhaps the ortho just wasn't the right person.

We were sent to an ortho once for possible arthroscopic knee surgery. My

daughter and I decided the guy was nuts and told the rheumy never to refer his

patients there. I was not impressed with him at all. Sounds like something else

needs to be done and this ortho doesn't know enough about JRA to be that much

help. Sorry you had to go through this and I hope you find the right help soon.

e, mom to joe 19 poly + lupus

slevindoski <slevindoski@...> wrote:

Hi everyone,

has been on Humira since February 2006. She was still

having ankle swelling and hip pain until August when her doctor

injected her ankles. She had tendonitis in her ankle from early

October until November, and she would limp quite a bit. After the

joint injections, her bloodwork returned to normal--hemoglobin went

up, platelets went down. Things seemed better, except she kept

limping. Her doctor said that she has great range of motion in her

hips, so he ordered xrays and an MRI of the hips.

The xrays were normal but the MRI showed fluid in the hips. Her

rheumatologist does not inject hips, so he referred us to the

pediatric orthopedic doctor to schedule hip injections. My husband

took her today, and it was a five minute visit. The doctor came in,

manipulated 's hips so that she wimpered. He said that he

has only done hip injections on a kid twice in thirty years. He

said it is not commonly done and that the hips are very hard to

inject. He said has no permanent damage to the hip

cartilidge or bone and her hips look good for a " JRA kid. " He said

she should do " low-impact " exercises and he scheduled a follow-up

visit for six months.

Am I missing something here? had to drop out of dance

classes and basically can not walk long distances. Low- impact

exercises????? She has been limping terribly, and I just received

an email from her teacher that said that she noticed that LIndsay is

having a lot of trouble. I thought that any inflammation can cause

damage. Was he suggesting we wait until there is permanent damage

to do something about her hips? Are hip injections really that

uncommon?

has been a lot worse throughout the course of her illness.

She isn't having fevers, rashes, and she hasn't missed that much

school. I am just wondering how effective her medicine combo really

is if an MRI shows inflammation in her hips. I am going to have to

call her rheumatologist on Monday. I am wondering how many patients

that he has had that have had hip injections.

Anyone have a child that has had their hips injected? What do you

think about waiting for the hip problem to just go away?

Thanks for listening.

Sophie

's mom, age 6, systemic jra

---------------------------------

Everyone is raving about the all-new beta.

December 9, 2006

Sophie,

I agree with the other comments you have gotten on this issue. A five minute

appointment with a specialist on your first visit is unacceptable.

Personally I think a five minute appointment with most any doctor is

unacceptable

when you have issues of just about any kind. If your rheumy reccomends the

injection then I think you need to investigate further and let your rheumy know

how you were treated by this doctor. Did this ortho have x-rays and other

things to look at before he saw . Maybe if he has been doctoring for 30

years it is possible that he has not kept up on the treatments for JRA kids. If

that's the case you probably want someone younger and more educated with

this disease. Old doctors are not all bad but some of them refuse to learn new

techniques, and there is no way they can learn and know everything there is to

know in their own field of specialty moreless another field.

I do not know anything about the joint injections for the JRA as we have not

had to go down that road. But as long as you trust your Rheumy then you need

to go with his reccomendations.

Good luck,

Veri & Jaye 12 poly

December 9, 2006

ly, with the dr not comfortable injecting hips, I don't think I

would want that dr doing it. It may be better to first find a dr

experienced in doing hip injections on juveniles. Admittedly, it may be

harder to find such a dr and it be covered by your insurance, but being

the third such operation by this dr in 30 would to me seem more

worrisome.

Misty & (8, systemic)

December 11, 2006

Thanks for your reply. I didn't think injecting the hips in a jra

child was really that unusual. We live in Northcentral PA and

travel to a Children's Hospital 1 hour and 45 minutes away. It is

still a rural location, and it appears the pediatric orthopedic

doctor has not treated many jra patients. Since my daughter's

rheumy referred us to him, I am really surprised by that. I am sure

there is no interventional radiologist at the hospital we go to. I

called CHOP (philadelphia) and they said we that rheumatology does

the injections there. I am sure the wait to get into rheumatology

would be very long.

Maybe it is time to switch from Humira to Kineret. 's

systemic symptoms have been quiet for a long time, and her hips are

the only troublesome joints right now.

Thanks for your reply. I am going to try to get in touch with her

rheumy over the next couple of days (it usually takes at least that

long to get him on the phone)

>

> Sophie:

> My son, had a hip injection at the age of 13. His JRA (his

is

> actually juvenile ankylosing spondylitis) started in his hips. It

was a

> fairly simple procedure. An interventional radiologist at

Cincinnati

> Children's injected Rob's hip. It did provide dramatic improvement

for

> about a month, but then we had to move on to Enbrel. At the time

of the

> injection, he was only on Methotrexate and Sulfasalizine, and

Naproxen.

> It sound ridiculous that this doctor would not inject her hip.

Perhaps

> you need to get a referral to another doc. This one does not seem

to

> understand that she needs the hip injections.

> I think that they are done quite commonly these days. Where do you

live??

> I would not wait on this to 'go away'. Her quality of life is being

> affected. I think that Rob has damage in his hips because his pain

has

> never gone away. I think that the rheumatologists were not

aggressive

> enough in the beginning with Rob and he has permanent damage.

> Perhaps its time to talk with your rheumy about trying another med?

> and Rob 17 Spondy

>

> On Sat, 09 Dec 2006 01:30:24 -0000 " slevindoski " <slevindoski@...>

> writes:

> Hi everyone,

> has been on Humira since February 2006. She was still

> having ankle swelling and hip pain until August when her doctor

> injected her ankles. She had tendonitis in her ankle from early

> October until November, and she would limp quite a bit. After the

> joint injections, her bloodwork returned to normal--hemoglobin

went

> up, platelets went down. Things seemed better, except she kept

> limping. Her doctor said that she has great range of motion in her

> hips, so he ordered xrays and an MRI of the hips.

>

> The xrays were normal but the MRI showed fluid in the hips. Her

> rheumatologist does not inject hips, so he referred us to the

> pediatric orthopedic doctor to schedule hip injections. My husband

> took her today, and it was a five minute visit. The doctor came

in,

> manipulated 's hips so that she wimpered. He said that he

> has only done hip injections on a kid twice in thirty years. He

> said it is not commonly done and that the hips are very hard to

> inject. He said has no permanent damage to the hip

> cartilidge or bone and her hips look good for a " JRA kid. " He said

> she should do " low-impact " exercises and he scheduled a follow-up

> visit for six months.

>

> Am I missing something here? had to drop out of dance

> classes and basically can not walk long distances. Low- impact

> exercises????? She has been limping terribly, and I just received

> an email from her teacher that said that she noticed that LIndsay

is

> having a lot of trouble. I thought that any inflammation can cause

> damage. Was he suggesting we wait until there is permanent damage

> to do something about her hips? Are hip injections really that

> uncommon?

>

> has been a lot worse throughout the course of her illness.

> She isn't having fevers, rashes, and she hasn't missed that much

> school. I am just wondering how effective her medicine combo

really

> is if an MRI shows inflammation in her hips. I am going to have to

> call her rheumatologist on Monday. I am wondering how many

patients

> that he has had that have had hip injections.

>

> Anyone have a child that has had their hips injected? What do you

> think about waiting for the hip problem to just go away?

>

> Thanks for listening.

> Sophie

> 's mom, age 6, systemic jra

>

December 11, 2006

Thanks e for your reply. I am thinking that the referral to

another doctor will have to be one at another hospital. Am I

correct in thinking that most doctors in the same practice will not

give a second opinion. The hospital has a new pediatric orthopedic

doctor that in hindsight, I wish we had seen instead.

Sometimes I really wish we lived in a bigger area!

Thanks again.

> Hi everyone,

> has been on Humira since February 2006. She was still

> having ankle swelling and hip pain until August when her doctor

> injected her ankles. She had tendonitis in her ankle from early

> October until November, and she would limp quite a bit. After the

> joint injections, her bloodwork returned to normal--hemoglobin

went

> up, platelets went down. Things seemed better, except she kept

> limping. Her doctor said that she has great range of motion in her

> hips, so he ordered xrays and an MRI of the hips.

>

> The xrays were normal but the MRI showed fluid in the hips. Her

> rheumatologist does not inject hips, so he referred us to the

> pediatric orthopedic doctor to schedule hip injections. My husband

> took her today, and it was a five minute visit. The doctor came

in,

> manipulated 's hips so that she wimpered. He said that he

> has only done hip injections on a kid twice in thirty years. He

> said it is not commonly done and that the hips are very hard to

> inject. He said has no permanent damage to the hip

> cartilidge or bone and her hips look good for a " JRA kid. " He said

> she should do " low-impact " exercises and he scheduled a follow-up

> visit for six months.

>

> Am I missing something here? had to drop out of dance

> classes and basically can not walk long distances. Low- impact

> exercises????? She has been limping terribly, and I just received

> an email from her teacher that said that she noticed that LIndsay

is

> having a lot of trouble. I thought that any inflammation can cause

> damage. Was he suggesting we wait until there is permanent damage

> to do something about her hips? Are hip injections really that

> uncommon?

>

> has been a lot worse throughout the course of her illness.

> She isn't having fevers, rashes, and she hasn't missed that much

> school. I am just wondering how effective her medicine combo

really

> is if an MRI shows inflammation in her hips. I am going to have to

> call her rheumatologist on Monday. I am wondering how many

patients

> that he has had that have had hip injections.

>

> Anyone have a child that has had their hips injected? What do you

> think about waiting for the hip problem to just go away?

>

> Thanks for listening.

> Sophie

> 's mom, age 6, systemic jra

>

> ---------------------------------

> Everyone is raving about the all-new beta.

>

December 11, 2006

Yes, he had both xrays and mri results. The MRI showed inflammation

in both hips, but no bone or cartlidge damage. I don't want to wait

for permanent damage. I am not sure the injections are going to

happen, so maybe we need to change meds.

Thanks for your reply. My husband was not at all happy with the

five minute visit!

>

> Sophie,

>

> I agree with the other comments you have gotten on this issue. A

five minute

> appointment with a specialist on your first visit is

unacceptable.

> Personally I think a five minute appointment with most any doctor

is unacceptable

> when you have issues of just about any kind. If your rheumy

reccomends the

> injection then I think you need to investigate further and let

your rheumy know

> how you were treated by this doctor. Did this ortho have x-rays

and other

> things to look at before he saw . Maybe if he has been

doctoring for 30

> years it is possible that he has not kept up on the treatments

for JRA kids. If

> that's the case you probably want someone younger and more

educated with

> this disease. Old doctors are not all bad but some of them refuse

to learn new

> techniques, and there is no way they can learn and know

everything there is to

> know in their own field of specialty moreless another field.

> I do not know anything about the joint injections for the JRA as

we have not

> had to go down that road. But as long as you trust your Rheumy

then you need

> to go with his reccomendations.

>

> Good luck,

>

> Veri & Jaye 12 poly

>

December 11, 2006

I am glad he shared with us that he has only injected two children,

b/c we definately do not want him doing 's hips. He also went

onand on about how difficult it is. I wish the office hadn't wasted

our time. It is a 1 hour and 45 minute drive each way, and he knew

before he even saw her that he would not be injecting her hips>

Thanks for replying!

>

> ly, with the dr not comfortable injecting hips, I don't think I

> would want that dr doing it. It may be better to first find a dr

> experienced in doing hip injections on juveniles. Admittedly, it may

be

> harder to find such a dr and it be covered by your insurance, but

being

> the third such operation by this dr in 30 would to me seem more

> worrisome.

>

> Misty & (8, systemic)

>

December 11, 2006

Sophie

I hope that 's rheumy is able to offer you some advice and get her

in somewhere with experience. Perhaps, since he is a rheumatologist and

definately would KNOW when a hip needs to be injected, that he could make

a phone call to CHOP for you? Just a thought.

Good luck, and keep us posted!

and Rob 17 Spondy

On Mon, 11 Dec 2006 23:25:44 -0000 " slevindoski " <slevindoski@...>