opinions

[Guest guest]

Each of us must carefully evaluate any advice/information we get from web sites, from books, from doctors, and from members of our group. Not all beliefs will be factual, no matter how well intended. Keep in mind that medical opinions of the best way to treat AIH differ, and so do the opinions of non-medical people. Please don't take ANYONE'S advice as gospel. Read as much as you can, talk to medical experts as much as you can, and then judge what you've heard.

Harper

[Guest guest]

Harper,

As usual, very nicely put. I am glad you posted. This too has been

concerning me and I didn't know how to word things. I seem to be in a

slightly " foggy " period right now. Have an appointment with Hepatologist

tomorrow. Hope he can shed some light on things.

Again, thanks and I hope your vacation went well. Sounded like you had a

very peaceful time.

[Guest guest]

GO Sandy!!! Let it out..... ! You know, expressing your feelings is

really, really good for HyperT's! REALLY!

Billie

[Guest guest]

Okay, you wanted honesty right now right? I told my husband off on

Saturday. I mean, really told him off. I don't think I left many

stones unturned for him to guess what I think about him at this point

in my life. Now, I have to say that I'm really stressed out, and I've

not had near enuff sleep, and I'm missing an 800.00 bird that I'm just

about to die trying to find.

I've had enuff upsets lately to last me a lifetime. And honestly, it's

not that I hate him, but right now, I hate EVERYTHING about him! He

mentioned that ours wasn't even a marriage which only made it worse,

so I told him to PLEASE PUNISH ME and LEAVE! It wouldn't have made

one bit of difference to me if he had or he hadn't. I can pack his

lunch or his suitcast, I just flat don't care. He however has no clue

just how stressed out I am, and could prolly care less. So if he

leaves, I will just go about my business and do whatever I need to do.

I am so tired of hearing that he's leaving, but it's only when I get

upset that he brings this up, and it's usually after I've flown off

the handle and given him my best thoughts for the day.

Saturday my son called to say that their a/c had gone out. He needed

to speak with my hubby who is btw, not his dad. Hubby rolled his

eyes, and took the phone, but you could tell he was not in the least

bit interested in talking to him to help him out. I don't have to

tell ya it went through me like a knife, and I just had to tell him

HOW I FELT, and did just that. I could have cared less how he felt

about what I said.

Now, I'm not a jealous woman, but he also heard Saturday about his

trying to hide the fact that he was talking to a woman online that we

both know. I wouldn't have ever said a word, but he literally tried

to break his back hiding his screen from me, and he's just too danged

skinny to accomplish it, so there ya have it! I let him have it again

and by this time I was screaming! Any other time I'd have laughed and

told her to take him and get him outta my hair. But I tell ya, right

now I'm not doing good, and if he pushes me, I'll end up hurting him.

I threw stuff Saturday so I wouldn't hit him, but Lord knows I came

real close to it. Yes, I feel totally out of control, all I want to

do is cry, but most importantly I just don't need any chin music from

him, or anybody else. If they leave me alone, things just seem to go

just fine. I figure if they're not gonna help me look for my bird

who's missing, then at least get off the dead butts and fix dinner or

do something constructive around the house. they aren't doing either,

so I just come home, take a shower, go to bed, get up the next

morning, come to work and start the same process over the next evening

after I get home. One thing I can honestly say is that right now, my

hubby couldn't satisfy me if he hung me with a new rope. And he's

just clueless.

Sandy ~Houston

On Mon, 29 Sep 2003 11:41:07 -0700 (PDT)

Nick Hamer <niku86@...> wrote:

[Guest guest]

Wow Sandy. I can hear your tremendous stress. When it rains it pours. I am

sending good thoughts your way.

Please take care,

At 03:07 PM 9/29/2003, you wrote:

>Okay, you wanted honesty right now right? I told my husband off on

>Saturday. I mean, really told him off. I don't think I left many

>stones unturned for him to guess what I think about him at this point

>in my life. Now, I have to say that I'm really stressed out, and I've

>not had near enuff sleep, and I'm missing an 800.00 bird that I'm just

>about to die trying to find.

[Guest guest]

yep, and I'm not letting any grass grow under my feet exercising my thoughts

these days!

I'm normally not this way, but I tell ya, when you lose a bird and have no help

from immediate family, even if it's just putting out flyers.....it tends to

really piss ya off. Well, I'm there! lol

Sandy ~Houston

Re: Opinions

GO Sandy!!! Let it out..... ! You know, expressing your feelings is

really, really good for HyperT's! REALLY!

Billie

[Guest guest]

My Opinion: I would sit back and give it time. Is there a reason to rush?

You say when she is not hyper she is the " best wife in the world " . Sounds

like you still love her and want the marriage to work out. when your

thyroid is off you are off and do not think straight. Is there a chance for

marriage counseling? You should go even if she will not. I will be praying

that your marriage will heal along with her body.

Tammy

[Guest guest]

THESE ARE MY ANSWERS!!

I'm sure this post is going to cause alot of debate and maybe a huge amount of

anguish but I just want to get opinions.

1) Do you think the world is becoming more accepting of lp people?

and do lp's feel like they're treated with respect? or when someone of very

little intelligence meets you they expect you to act like an idiot or make a

fool of yourself? I think its become more accepting now, especially for me and

I do not know why? I guess perhaps I'm getting used to idiots or something I

dunno. I just enjoy my life and myself and I'm getting married soon and am in

love so I don't care about anyone but BILL!!

2) Is there more attention put on an lp couple than a couple where

one is average and the other is lp? I never have been with an LP before now but

I really feel that people give us attention but we're so much in love and enjoy

being around one another that they look to us as if they ENVY US if anything.

Its really neat there is more POWER IN NUMBERS ANYWAY!

3) How do you deal with your child who is LP growing up and

experiencing all the anguish you have? I don't know much about that because I

have no chilren but I'm telling you if I had I would treat them the way my

parents raised me and there fore they would have to be strong and independent

and who cares if they're short they will deal and help themselves and I would

show them the way!!

===

[Guest guest]

I'm curious about something that has popped into my head. Most of us had Harrington rods and after several years our spine above and below the fusion has deteriorated to the point that we needed revision surgery.

Once we have been fused to the sacrum with iliac screws, what is the next joint to suffer all the wear and tear? Should we exercise to build up the muscles to protect this joint? Should we take it easy and avoid wearing out the joint? Should we exercise to keep muscle strength but avoid activities that will put extra wear and tear on the joint (laundry, mopping, vacuuming, bending from the hips, etc.)?

What is everyone's thoughts? Has there been any research on this or are none of us far enough along after revision that they know the next step?

Peggy

[Guest guest]

Very good questions, Peggy. I'll definitely be following this.

On a side note, wouldn't it be nice if we were deemed "Queens" after going through all of this and not have to worry about wearing anything else out because of doing household chores and our insurance companies and/or government assign us our own personal assistant. I know that sounds outlandish, but we are victims of a faulty procedure and abnormal spines.

G

[ ] opinions

I'm curious about something that has popped into my head. Most of us had Harrington rods and after several years our spine above and below the fusion has deteriorated to the point that we needed revision surgery.

Once we have been fused to the sacrum with iliac screws, what is the next joint to suffer all the wear and tear? Should we exercise to build up the muscles to protect this joint? Should we take it easy and avoid wearing out the joint? Should we exercise to keep muscle strength but avoid activities that will put extra wear and tear on the joint (laundry, mopping, vacuuming, bending from the hips, etc.)?

What is everyone's thoughts? Has there been any research on this or are none of us far enough along after revision that they know the next step?

Peggy

[Guest guest]

Peggy,

Funny, the other day I was thinking about this. It came up after a

somewhat un-related event my husband and I were talking about.

Perhaps you happened to see the video of an Airbus attempting to land

in Germany last week in an extremely stiff crosswind? Of course the

airline came out and said what a " hero " the pilot was....and the news

media seems to have gone along with that.

ly, I doubt most within the airline industry see that video as

examples of " heroic " actions. Instead...what most experienced pilots

are wondering is why the heck they were trying to land in the first

place. Getting to the point... DH was saying that any time a pilot

attempts to land an airplane beyond the legally " demonstrated

ability " the aircraft (and the crew and passengers) have in effect

become test pilots & passengers.

The " demonstrated ability " is established after numerous tests on the

aircraft before it is certified for sale/use by the manufacturer.

They put the craft through its paces up to the limit that is felt to

replicate the extreme edges of any conditions the aircract might

encounter. These calculation are the operational books....and if you

exceed those limits you are on your own...a test pilot.

Flash back to us.

My feeling is that every day one of us lives with the after effects

of the original HR surgery, and the follow on revision surgey we too

are also " test pilots " . There are no " longitudinal studies " ...because

WE are the cohort that is " aging " into this next round of techniques.

If you go into Pubmed.gov and glance around, search under " adjacent

segment + spine + fusion " you will see that the jury is just coming

in on what has happened to us. At 10 years out, Bonnie is our longest

revised member and her troubles with her SI are certainy cautionary

for me. Does it mean I WILL have troubles?....Dunno. Do I think that

now that I realize that my fused spine is now placing signifigant

additonal burdens on every other mobile disc or joint, ligament and

muscle in my body I should recognize that any prediction on the part

of the medical profession would be a guess and that I am now my own

best " safety net " . Yes, absolutely, positively....YES! There are no

studies...because they will be, and have been, studying US.

In answer to your question...and I am sorry for my long winded

answer...here is what I have concluded:

I attempt to make my core strong enough to help support my whole

body. I will only exercise in ways that minimize impact. That is why

I am so fond of telling everyone about how great I think the water

is. It does not pound on the joints at all. That said, swimming/water

does not provide the ideal weight bearing exercise necessary to avoid

osteoporosis....another " bug-a-boo for us implanted folks. So I walk

gently...dog walking...a few times a week...and I try to choose my

footwear and avoid walking on hard surfaces. I suppose and elliptical

trainer would be good too....but not at the exclusion of the pool. I

am guessing that too much concussive/weight bearing will be bad for

me long term. But I am guessing. My surgeon does advise wearing gel

insoles to minimize some of the pounding walking can create.

As to activities of every day living....I can only say that I

personally have decided that I will modify my environment to the

extent possible to avoid impacting areas that are know trouble spots

for us....known to this group anyway...I don't think you will find

much conclusive research. That includes modifying my husband and

child. The big trouble spots in our group seem to be the knees and

SI's. Also noted problems seem to crop up above the fusion as you

were describing last week.

To the extent that you too can modify your living and working

situation I would say everyone should do it. I do think grappling

with this is part of the " mental game " of really becoming " healed "

after revsion. For me that is still an evolving process at 3+ years!

I am still learning.

Take Care, Cam

> Once we have been fused to the sacrum with iliac screws, what is

the next joint to suffer all the wear and tear? Should we exercise

to build up the muscles to protect this joint? Should we take it

easy and avoid wearing out the joint? Should we exercise to keep

muscle strength but avoid activities that will put extra wear and

tear on the joint (laundry, mopping, vacuuming, bending from the

hips, etc.)?

> What is everyone's thoughts? Has there been any research on this

or are none of us far enough along after revision that they know the

next step?

>

> Peggy

>

[Guest guest]

Peggy and Cam,

Kumar was careful to say to me when beginning my surgical journey with him that they plain don't know how we will be 10-20 years out. I think all of us have learned lessons from our past with our Harrington Rods, this surgery hasn't "Healed" me, just improved my function and pain levels, and we should respect our bodies( something I sure didn't following my Harrington Rod surgery). I try to be careful not to over use my knees. I also am fused quite high, and want to avoid at all cost having my fusions extended above my my current fusion to T1 into my neck, so I lay down and rest my neck a couple of times a day, just to relieve pressure. I'm currently having a bit of pulling and pain in my area of my bolts, have had this twice and hopefully it will pass, but it does give me pause.

Those of you newer, or even old timers like us, can learn from those who go before us. Bonnie has taught me alot about pacing ones self, and the care she takes with her body, and knowing limits is amazing to me. Our SI joints are a concern, and she does struggle with hers, but has managed to have a pretty full life with her pain mgt doc's and exercise that she is religious about. Another gift she has given me is showing me how important sleep is, in allowing our very fused bodies to really rest.

At five years out from my last revision, and seven years from the beginning of my flatback surgical journey, I'm sure many wonder while I and others way away from the surgical part are still here. The reasons for me are two fold, one to be of help and support for those going through it right now, but the second might be a bit more selfish, here is a running account of how we age with all this hardware and technique, how we do and handle it. I learn from pioneers like Bonnie, and maybe you can learn from people like me who have hit the five year milestone.

Cam's points were excellent about this. I would add that while I'm good now, and always hope to be, who knows. I look at my fairly terrific five years as a gift, could it change, yes, but I try and stay possitive. I stay in good contact with my doc's office, am lucky he's close by, lucky he's my age and won't be retiring any time soon, and that give me comfort knowing he's available if I need any tweeking. The rest is up to me, using good sence. This gift I got is too precious to squander away. Do I take care, you bet. Cam does things that make sence to care for herself, and so do I.

Peggy, you'll have to make your own decisions based on your body, I have , Cam has. It's good we all share, as here is a written " follow-up" that continues each day, from guys and gals that have gone before you. Lessons to be learned there, along with the advice from your doc and medical people. We live in these fused bodies, and boy have I learned from all of you here.

Colorado Springs

[ ] Re: opinions

Peggy,Funny, the other day I was thinking about this. It came up after a somewhat un-related event my husband and I were talking about. Perhaps you happened to see the video of an Airbus attempting to land in Germany last week in an extremely stiff crosswind? Of course the airline came out and said what a "hero" the pilot was....and the news media seems to have gone along with that.ly, I doubt most within the airline industry see that video as examples of "heroic" actions. Instead...what most experienced pilots are wondering is why the heck they were trying to land in the first place. Getting to the point... DH was saying that any time a pilot attempts to land an airplane beyond the legally "demonstrated ability" the aircraft (and the crew and passengers) have in effect become test pilots & passengers.The "demonstrated ability" is established after numerous tests on the aircraft before it is certified for sale/use by the manufacturer. They put the craft through its paces up to the limit that is felt to replicate the extreme edges of any conditions the aircract might encounter. These calculation are the operational books....and if you exceed those limits you are on your own...a test pilot.Flash back to us. My feeling is that every day one of us lives with the after effects of the original HR surgery, and the follow on revision surgey we too are also "test pilots". There are no "longitudinal studies"...because WE are the cohort that is "aging" into this next round of techniques.If you go into Pubmed.gov and glance around, search under "adjacent segment + spine + fusion" you will see that the jury is just coming in on what has happened to us. At 10 years out, Bonnie is our longest revised member and her troubles with her SI are certainy cautionary for me. Does it mean I WILL have troubles?....Dunno. Do I think that now that I realize that my fused spine is now placing signifigant additonal burdens on every other mobile disc or joint, ligament and muscle in my body I should recognize that any prediction on the part of the medical profession would be a guess and that I am now my own best "safety net". Yes, absolutely, positively....YES! There are no studies...because they will be, and have been, studying US.In answer to your question...and I am sorry for my long winded answer...here is what I have concluded:I attempt to make my core strong enough to help support my whole body. I will only exercise in ways that minimize impact. That is why I am so fond of telling everyone about how great I think the water is. It does not pound on the joints at all. That said, swimming/water does not provide the ideal weight bearing exercise necessary to avoid osteoporosis....another "bug-a-boo for us implanted folks. So I walk gently...dog walking...a few times a week...and I try to choose my footwear and avoid walking on hard surfaces. I suppose and elliptical trainer would be good too....but not at the exclusion of the pool. I am guessing that too much concussive/weight bearing will be bad for me long term. But I am guessing. My surgeon does advise wearing gel insoles to minimize some of the pounding walking can create.As to activities of every day living....I can only say that I personally have decided that I will modify my environment to the extent possible to avoid impacting areas that are know trouble spots for us....known to this group anyway...I don't think you will find much conclusive research. That includes modifying my husband and child. The big trouble spots in our group seem to be the knees and SI's. Also noted problems seem to crop up above the fusion as you were describing last week.To the extent that you too can modify your living and working situation I would say everyone should do it. I do think grappling with this is part of the "mental game" of really becoming "healed" after revsion. For me that is still an evolving process at 3+ years! I am still learning.Take Care, Cam> Once we have been fused to the sacrum with iliac screws, what is the next joint to suffer all the wear and tear? Should we exercise to build up the muscles to protect this joint? Should we take it easy and avoid wearing out the joint? Should we exercise to keep muscle strength but avoid activities that will put extra wear and tear on the joint (laundry, mopping, vacuuming, bending from the hips, etc.)?> What is everyone's thoughts? Has there been any research on this or are none of us far enough along after revision that they know the next step?> > Peggy>

[Guest guest]

Hi Peggy,

I'm 10 years post revision. My sacroiliac joints (SI Joints) started bothering me a few years ago, probably about 4 years ago. After my revision, Dr Boachie told me to be careful of my hips and knees because they would carry the stress that the spine usually carries. He didn't say anything about my SI Joints. A CT scan in July, 2006 revealed deteriorated SI Joints, particularly on the right side. I immediately started researching, and found very, very little definitively connecting deteriorated SI Joints with revision surgery. Then a few months ago, when my right hip flared up yet again, I finally asked my pain doc to send me for a hip X-ray. The x-ray showed "no acute right hip abnormalities", but the radiology report also states, "benign appearing sclerosis inferiorally at right sacroiliac joint...most consistent with postoperative changes as seen on the CT Pelvis of 7/20/06."

So, if I were in your shoes now, I'd be careful of my SI Joints. But how to protect them? I have no idea. I would think that just about any activity stresses the SI Joints. As my pain doc says, my fused spine is forcing my SI Joints to move more than they were intended to move.

has also mentioned that he's had SI Joint pain that started some time after revision.

Bonnie

[Guest guest]

Hello ...I just in March had a RTHR done by

Chen...He's a master! His " bedside " manner isn't that easy, only in

that he's a little shy, not gruff or anything, but his " carving "

skills are great!

My stay at Alta Bates hospital couldn't have been better: great

nurses, terrible food, good PT, and overall great service.

If there are any details about Chen you would like to

have, send me a questionaire, and I could fill you in. Overall, it

was a great experience, and in 4 days I'm taking off for a walk in the

Swiss Alps with my new hip!

All the best, Lisel

I am going to be seeing Dr. Coons in Red Bluff for a consult in

August. In

the mean time, my GP gave me the card of a Dr. J. Chen in

Berkeley, CA. Her thinking was just to get another opinion. Has anyone

else here had TKR with Dr. Chen in Berkeley?

Thanks,

claire

[Guest guest]

Oh Lisel, did you go to California for your procedure? I thought you

were in Michigan.

My surgery is a week from tomorrow!!!!!

In four months are you now " like new " ?

congratulations....your walk in the Swiss alps sounds like something

beautiful. Hope I can do it someday too.

Meanwhile this year I took my family to the Big Island of Hawaii

(where I could hardly move my hip hurt so bad) and next year I hope

somewhere in the Caribean with walking skills wonderfully intact

again.

Say a prayer for me & Dr ni on Thurs July31st!

Lynn

>

> Hello ...I just in March had a RTHR done by

> Chen...He's a master! His " bedside " manner isn't that easy, only

in

> that he's a little shy, not gruff or anything, but his " carving "

> skills are great!

>

> My stay at Alta Bates hospital couldn't have been better: great

> nurses, terrible food, good PT, and overall great service.

>

> If there are any details about Chen you would like to

> have, send me a questionaire, and I could fill you in. Overall,

it

> was a great experience, and in 4 days I'm taking off for a walk in

the

> Swiss Alps with my new hip!

>

> All the best, Lisel

>

>

> I am going to be seeing Dr. Coons in Red Bluff for a consult in

> August. In

> the mean time, my GP gave me the card of a Dr. J. Chen

in

> Berkeley, CA. Her thinking was just to get another opinion. Has

anyone

> else here had TKR with Dr. Chen in Berkeley?

>

> Thanks,

>

> claire

>

>

>

[Guest guest]

Hanks - I guess I will give him a call!

Callahan Goodman

Hello ...I just in March had a RTHR done by

Chen...He's a master! His " bedside " manner isn't that easy, only in

that he's a little shy, not gruff or anything, but his " carving "

skills are great!

My stay at Alta Bates hospital couldn't have been better: great

nurses, terrible food, good PT, and overall great service.

If there are any details about Chen you would like to

have, send me a questionaire, and I could fill you in. Overall, it

was a great experience, and in 4 days I'm taking off for a walk in the

Swiss Alps with my new hip!

All the best, Lisel

[Guest guest]

Hi Lynn...You are going to be so happy so very fast...I will be

thinking about you on the 31st, as I'm winding up the hillside in our

little Swiss train.

Acutally I live 1 block away from Chen's office, and 1/2

block away from the Hospital in Berkeley! I lucked out by geography!

I'll have a lot to catch up on when I get back, and I'll miss you

all. Lisel