Thanks, everyone

[Guest guest]

Hi Again, Sheila...<br><br>There are two great

sites I'd like to recommend, for researching TD. One is

the ITG Webpage, which you can access via a link on

the WTDF homepage. The article entitled " Suggestions

For An Approach To The Management Of Thyroid

Deficiency " is one of the most informative I've ever

encountered. <br><br>Another " must see " place is Shomon's

About.com Thyroid Forum...I've never seen anything more

comprhensive! It used to be called the Thyroid Miningco., and

she has more links to more articles than you can

imagine! She also has a free monthly newsletter that she

emails, called " Sticking Out Our Necks " ; she does a good

job in it of keeping up with all the latest TD news.

You can even access her old newsletters, which are

DEFINITELY worth the time it takes to read them!<br><br>Both

WTDF and About.com have message boards, and hold chats

(WTDF is especially friendly, like this forum is)

....and the links you'll find in those places will become

invaluable to anyone who is trying to research their TD.

Enjoy! ~_~<br><br>((((hugs to all my friends here!))))

<br><br>

[Guest guest]

Lori...

Well done! You managed to make the trip without too much trouble

which is no small feat at this time of the winter.

And the good news also is that you kind of have a plan now...start

with the hip and then see what is next. How long post-hip do you

think you would have to wait? While I was doing my pre-admit on

thursday I was watching all the knee/hip folks and alot of them were

still recovering from their first joint and getting prepped for

their other side. I was surprised.

How does the syrinx play into the picture....after they get a good

shot of it via MRI will they do anything about it, or is it

just " nice to know " information?

Would LaGrone do A/P surgery or posterior only?

Lots to think about, but overall it sounds like you are satisfied

with the information the " not so easy " trip yielded. Thats good.

Take Care, Cam

[Guest guest]

Lori, I'm so glad your trip went well. Flying there alone was,

indeed, a truly feisty accomplishment.

You didn't say how you felt about putting off the flatback revision.

I hope you feel that you can put up with your sagittal imbalance all

right in the meantime.

It comforts me to realize that hip replacement surgery is as well

established as it is and has been as successful as it has for so

many people.

This is not medical advice and is my highly personal opinion, but I

think I would do almost anything to avoid another two-part revision.

I realize that other people may not have the same problems I do with

getting so much anesthesia in two separate installments. Of course I

am not clear on how the syrinx situation might figure into all this;

maybe you do not have a real choice here? And you do have some time

to think about it.

Again, I admire you for making the trip to see Dr. Lagrone -- bravo,

and thanks for sharing what you learned.

>

> Well, I'm back from my big trip to Texas (from Rochester, NY) to

> consult with Dr. LaGrone about fixing my flatback. Thanks to

> everyone who posted or sent me private emails giving great advice

on

> flying, taxis, hotels, getting assistance from the

airlines/airport,

> etc. The trip couldn't have gone better and I would have been

> lost without all your advice.

>

> Dr. LaGrone and his staff were super nice and he was very patient

> with my pages of questions. His surgical plan would be a little

> different from Dr. Boachie's and my local OS's. His plan

> would be to take out all my Harrington Rods and hooks, instead of

> just part of them. He also gave me the option of staging the

> operation to remove the old instrumentation and then having an MRI

to

> assess the status of the syrinx (fluid filled cyst) in the central

> canal of my thoracic spine that currently can't be completely

> seen by

> MRI because of distortion from the instrumentation. Then a few

days

> later he'd do the osteotomy and reinstrumentation.

>

> The biggest piece of news is that he agrees with Dr. Boachie that

I

> should have my left hip replaced before having the flatback

revision

> surgery. So that means my flatback fix will be put off for one to

> two more years. So next I'll be contacting my local hip OS to

> see if he will agree to replace my hip this spring.

>

> I had never traveled alone before and was very nervous, but it all

> worked out great. I missed reading the Feisty posts for the three

> days I was gone and got caught up on them last night. Sharon, you

> are so brave to have made it through the MS treatment! I hope

that

> you will see noticeable benefits from it and that things will calm

> down for you soon. Cam, am excited for your nearing surgery date

and

> hope that it is a complete success. To all -- catching up on a

few

> days of posts brought the usual combination of smiles and

sadness. I

> never fail to be impressed by the Feistiness of you all. Thanks

> again everyone for your great advice about my trip!

>

> loriann

[Guest guest]

Thanks, ,

I have mixed feelings about putting off my flatback surgery. It's

hard because each problem (bad hip, bad spine) contributes a lot to

my poor gait, my fatigue, and my inability to stand or walk unaided

or be active for very long. So they both probably need to be done.

My sagittal balance improved some by having my first hip replaced.

The docs think it will probably improve even more by having my second

hip replaced. If the discomfort from the remaining sagittal

imbalance is bad enough, I probably will want to have the flatback

revision surgery when I'm recovered from the hip surgery. I have a

pretty bad limp and moderate flexion contracture in my left hip which

really inhibits my ability to walk, which hopefully will improve

after hip replacement. From what I've been told by docs and

feisties, being able to walk better than I do now will really aid in

rehab from the possible future flatback surgery.

Whether or not to stage the flatback revision is a decision, and I'm

leaning toward saying yes, because right now, there is no way of

knowing what's causing some of my symptoms (numbness, tingling, loss

of feeling/sensation in multiple areas) The syrinx is very narrow in

the area above my Harrington Rod and staging my surgery might be the

only chance to see if the syrinx is much wider below T5. If it is

wider down below, the docs will then be more confident that it's

causing my symptoms. Of course, then they may have to come up with a

plan to treat it, but I guess I'll have to deal with that at the time.

I'm really glad that he'll be trying to take out all my Harrington

Rods and hooks, because I have in the back of my mind that it might

be one of the hooks that is impinging on a nerve or worse, and

causing some of my neurologic symptoms. Hmm, if the syrinx is not

wide and if the Harrington Hooks were causing symptoms, I wonder if I

would notice any improvement in sensation the few days after surgery

before stage 2, or if I'd be in too much pain from the surgery to

notice anything?

If the syrinx is not wide and I still have the symptoms even without

the rods, I'll be no worse off than I am now (assuming no

complications from the rod removal). I'd then proceed with stage two

of the osteotomy and reinstrumentation. I don't think either part of

my surgery will be as long as some of you have had to endure, and

I've never had any trouble with anesthesia with other surgeries, so

I'm not too worried about that.

The biggest thing I'm worried about is that my neurologic symtoms

might get irreversably worse by putting off spine revision

surgery 'til after the hip replacement. My other fear is that my hip

surgeon will say my hip is not in bad enough shape to warrant

replacement this year. I'm anxious to get the party started at

fixing at least some part of my poor old-feeling body this spring, as

that's the best time for getting help with caring for my kids, etc.

Anyways, thanks for your post and support, . My memory is

failing me --Your MRIs have never found any evidence of a syrinx or

hydromyelia in your spine, have they?

loriann

>

> Lori, I'm so glad your trip went well. Flying there alone was,

> indeed, a truly feisty accomplishment.

>

> You didn't say how you felt about putting off the flatback

revision.

> I hope you feel that you can put up with your sagittal imbalance

all

> right in the meantime.

>

> It comforts me to realize that hip replacement surgery is as well

> established as it is and has been as successful as it has for so

> many people.

>

> This is not medical advice and is my highly personal opinion, but I

> think I would do almost anything to avoid another two-part

revision.

> I realize that other people may not have the same problems I do

with

> getting so much anesthesia in two separate installments. Of course

I

> am not clear on how the syrinx situation might figure into all

this;

> maybe you do not have a real choice here? And you do have some time

> to think about it.

>

> Again, I admire you for making the trip to see Dr. Lagrone --

bravo,

> and thanks for sharing what you learned.

>

>

[Guest guest]

Hi Katalin,

Welcome to the 'other side'. So glad to hear that the operation went well.

Best wishes,

libby

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[Guest guest]

I'm grateful for all the input -- I'll take my glorified bleach back

to the camping store! Phil, is it possible to determine the name of

the producer in Germany from the stuff you got?

Best,

Teri

[Guest guest]

Sorry, I did intend to mention the name. MERCK.

The solution is slightly stronger, than the flake (either strength is okay).

The solution seems to be less hazardous to ship but this may be less of a

problem in your case.

Phil

[ ] Thanks, everyone

I'm grateful for all the input -- I'll take my glorified bleach back

to the camping store! Phil, is it possible to determine the name of

the producer in Germany from the stuff you got?

Best,

Teri