Re: Good News

[Guest guest]

Jodi,

Can't tell you how thrilled I am that you are finally back on track!

Have a great birthday

[Guest guest]

magicrss3 magicrss@...> wrote:

I have good news, for a change. Max does NOT have dystonia!!

Yippee!!! He does have Tourette's, though, but we can deal with

that.

It's been a long day, so I will keep this " short, " if I can, but I

want to share what we learned. Basically, we are facing what we

faced two years ago when Max had that stomach infection and he had

that breakdown. His brain cannot handle the stress that he has just

undergone from the surgery. While he handled it well on the

outside, he was much more scared than he led us to believe and it is

manifesting itself in these ways that we have observed. To top it

off, these behaviors have made him even more scared, so a vicious

cycle has started. The pain is very real. The tremors are

involuntary. They are not tics.

How do we treat this? Very carefully. Our job as his parents is to

normalize his routine/life as much as possible. That means, get him

to camp and keep him there, even if he has to use a wheelchair or

crutches. No problem there. The camp is where I work and it is for

kids with special needs. The other job we have to do is to help

with pain control. We have enough Tylenol with Codeine and Advil in

this house to last a long, long time. Fortunately, when in pain,

Max usually chooses Advil, so I don't have to worry about addicition

on top of everything else. And when the tremors are really bad, we

will give Max Ativan, which is like Valium. That calms him and

makes him sleep. It's almost like he has panic attacks sometimes,

so the Ativan kicks in and helps that.

We will also probably increase his psychologist visits to twice a

week for a little while. And he will see his psychiatrist a little

more often to monitor the meds. We have all been through this

before, so we will rally around Max and get him through this. It is

not easy, but we will. The other alternative is to hospitalize him

in a psychiatric facility and we will NOT DO THAT EVEN FOR A DAY!!!

We can overcome this together. And we will.

So, the good news is that he does not have dystonia. The " bad " news

is that we know what it is and we have to work hard to deal with it

and manage it. Max has cried and cried and expressed his fears, but

I think we have put them to rest now. He's got a great team of

doctors to help him through and I have a great group of friends to

help me. And my husband is just so supportive through all of this.

When the doctor today wanted us to take Max to another psychiatrist

who specializes in this, said no. He said that Max has had

enough, that we trust who we have and we do not want to scare Max

even more. We can rely on our own people now and move on from there.

So, those of you who will see us in Chicago, Max may or may not be

in a wheelchair. He may or may not be using crutches. BUT we will

be there and he will be part of things and we will have fun.

Now I am going to have some of my own birthday cake (it's my

birthday and I just got the best present of all - a working

diagnosis that we can handle) and enjoy my family. Thank you all.

Jodi that is great news about Max. I am so happy that things are working out

for him and we are looking forward to meeting the both of you, we will all have

fun together weather or not he is walking and we are all here for you and Max.

Take care and have a really great birthday your right that was the best present

ever. Love n

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

[Guest guest]

Hi Jodi!

I think I am caught up somewhat now! Glad to hear things are going a

little better! Easton did not work out, but that is okay. (We turned

them down!) Long Story! Can't wait for that drink in Chicago!

Carmen

[Guest guest]

Thanks, Edith. I wish I could forward that information to all of the

OS's here in Atlanta that have discouraged this procedure. Maybe

they'd move into THIS century and we wouldn't have to go to another

state to have this done!!!

Dr. Gross 6/12/03

RHR C2K

[Guest guest]

Yes this looks really great! I note that they cite Amstutz who abandoned

BHRs for their supposedly unacceptable failure rate. They should have

amended that to saying he abandoned them since he wasn't going to be the

one with the patent, ergo, no royalties.... Hopefully US doctors can get

their success rates with resurfacing up to that of their European

counterparts.

Cheers,

Jeff

rBHR Aug. 1, 2001

Mr. McMinn

>Hi,

>

>Totallyhip list posted a message tonight with notice from

>http://www.totaljoints.info/what_new1.htm of great news about studies on

>BHR's........ seems noone can believe the low complication rate

>etc..........

>

>Finally the numbers are coming in..........

>

>Edith LBHR Dr. L Walter Syd Aust 8/02

>

>

>

>

>

[Guest guest]

Hi,

Yes it was interesting that they said that about Amstutz as it can well be

interpreted as saying an US doctor isn't as good as his fellows in many

other countries........ Which I am sure isn't the case and I am sure he will

not like.......... with the lingering bit (that seemed they couldn't help

themselves) that could also suggest the rest were fudging the

figures...........

Actually it is funny, initially I didn't worry much about how long these

things last, just so excited that I had something after 35 years

entrapment....... Now I find life so good with one I am starting to think

about 'how long for???'..........smile. Great to hear that they don't seem

to have much tendency to move and that the stress factor benefits are

becoming so clear............ I knew that anyway from my own xrays but it

always helps to see that this is general............

And I don't imagine you will have to worry too much about needing to

do the advertising..........the manufacturers will be making sure all those

OS you speak of are getting this information at this point..........smile.

It doesn't take long once the message starts getting out there if Australia

is anything to go on........... My anaesthestist brotherinlaw hadn't heard

of them when I had mine 18 months ago. He now assisting at ops for them as

a regular part of his daily work........... and he practices in a country

area not a major hospital.

Edith LBHR Dr. L Walter Syd Aust 8/02

> Yes this looks really great! I note that they cite Amstutz who abandoned

> BHRs for their supposedly unacceptable failure rate. They should have

> amended that to saying he abandoned them since he wasn't going to be the

> one with the patent, ergo, no royalties.... Hopefully US doctors can get

> their success rates with resurfacing up to that of their European

> counterparts.

>

> Cheers,

>

> Jeff

> rBHR Aug. 1, 2001

> Mr. McMinn

[Guest guest]

I'm a little concerned about the very different conclusions about

the BHR voiced by Dr. Amstutz in this link, vs. the excellent

results of the BHR reported elsewhere, and the good statistics from

DeSmet. Seems we have strong disagreement between two of the titans

of surface replacement. Has anyone got any insight into this? I'm

getting very close to wanting to schedule for surface replacement -

I recall that this group posted that the surgery committee of the

FDA was going to consider surface replacement in late March. Any

news on this would be great to hear (I assume it'll be BIG news and

we'll all hear, but just in case...)

Thanks to all!

Nolthenius

> Hi,

>

> Totallyhip list posted a message tonight with notice from

> http://www.totaljoints.info/what_new1.htm of great news about

studies on

> BHR's........ seems noone can believe the low complication rate

> etc..........

>

> Finally the numbers are coming in..........

>

> Edith LBHR Dr. L Walter Syd Aust 8/02

[Guest guest]

> I'm a little concerned about the very different conclusions about

> the BHR voiced by Dr. Amstutz in this link, vs. the excellent

> results of the BHR reported elsewhere, and the good statistics from

> DeSmet. Seems we have strong disagreement between two of the titans

> of surface replacement. Has anyone got any insight into this?

Looking at Amstutz's actual paper (rather than someone else's

interpretation of it), he says that he initially tried the

" fully cemented McMinn " hip. This is *not* the BHR device which

is currently in use, The BHR is a " hybrid fixation " device which has

an uncemented hydoxyapatite coated " press-fit " acetabular component,

just like the Conserve Plus and the Cormet 2000.

I don't think there's any conflict here - the fully cemented design

was tried and rejected by McMinn as a result of his initial

resurfacing pilot study in 1991-1994 (this is briefly mentioned on

page 30 of the BHR brochure). I assume this was for exactly the same

reasons encountered by Amstutz.

If I'm wrong about this, I assume Chuck of JRI (who reads this

group pretty regularly) will correct my misstatement.

> I'm

> getting very close to wanting to schedule for surface replacement -

> I recall that this group posted that the surgery committee of the

> FDA was going to consider surface replacement in late March.

The advisory panel cancelled their March meeting.

I think their next scheduled meeting is in June. You can check the

FDA website.

Steve

[Guest guest]

Hi Kent

In six months time this period will feel like a distant unpleasant

dream....all the very best in Belgium.

ine

RHS April 03

LHS March 04

> I am 34 years old and have been unable to do any physical activity,

> aside from walking, for the last 5 years. I live in Canada and

have had

> a terrible time with the doctors here. They first told me I was too

> young for a THR and had to get by with med. After two years of

taking

> Vioxx and developing a nice addiction to my pain meds I found out

about

> resurfacing. At this time it was not performed in Canada. I

> investigated going overseas to have it done but was unable to

because of

> the cost. I started saving at once. Two years later my OS went to

> England and was trained by McMinn. The local Health dept. approved

75

> procedures the first year. I was number 32. The Health dept. made

him

> stop at 11. By this time I was to the point of barely able to pick-

up

> my youngest daughter for fear of falling. Just after Christmas I

was

> taking both of my children to the babysitter when I was going to

some

> stairs and fell with her in my arms. Nobody was hurt, but that

was it

> for me. I'm scheduled to have a BHR on April 28th with Dr. De

Smet. My

> kids will have to pay for College themselves now but that's okay. I

> don't care about the disaggrements between the two camps all I now

is

> that if had a THR I was told no running, no lifting and so on,

which to

> me means no life. I know a gentleman here who had a BHR with Dr.

> Treacey and just got back from 2 weeks of heli skiing in Blue River

BC.

> Even if this only lasts 10 years I will be extremely grateful. The

> government in Canada and the US will probabley do the right thing

in the

> end and approve this new technology, but I don't have time to

wait. I

> will be posting how things go for me and will be focusing my

attention

> on bringing this technology to Canada.

>

>

>

> Kent

>

>

>

> Re: Re: Good news

>

>

>

> Hi :

>

> Whenever there's any commercial interest at stake, there's bound to

be

> competing advertising. That inevitably leads to confusion in the

mind of

> the

> potential consumer, i.e. you. You need to focus on the science of

> surface replacement

> and the track record of the surgeon. That's the way out of the

> confusion.

>

> All anyone in this group can honestly do, aside from the physicians

and

> engineers among us, is report their own experience. It's up to you

to

> decide what

> to believe from the surgeon and whether to believe in them.

>

> We all have our own stories and points of view. Ultimately it's your

> decision

> whom you choose to change your life.

>

> Best of luck with your choice. We all took the plunge using this

same

> thought

> process.

>

> Des Tuck

> Bilateral BHR - Treacy

>

>

>

> In a message dated 3/27/2004 10:55:48 AM Pacific Standard Time,

> rickn27@h... writes:

> I'm a little concerned about the very different conclusions about

> the BHR voiced by Dr. Amstutz in this link, vs. the excellent

> results of the BHR reported elsewhere, and the good statistics from

> DeSmet. Seems we have strong disagreement between two of the titans

> of surface replacement.

>

>

>

[Guest guest]

FYI, the BHR device is to be soon approved for general use (and even

covered by NHS!) even here in CZ, eventually. It's said there are at

least two Czech OS's actually undergoing training practice....

Pavel

Czech Rep.

LBHR DeSmet 20.8.2003

[Guest guest]

WOW! What a trip! And I complain about 2 1/2 hours...

Glad to hear Dr. P had such good news about Everett's feet. Sorry

he wasn't as pleased with 's.

Marilouise

9/9/03, LCF, 3 week cast after 2nd tenotomy

Owen and 3/20/99

> Hello,

> we made it to Iowa and back! Eleven hours up and twelve hours

back (several traffic jams around Kansas City). Dr. Ponseti was

so thrilled with Everett's progress! He just grinned ear to ear and

kept talking about how happy he was. Everett showed off pushing

the stool (on wheels) around the hall way. He reduced the braces to

60 degrees rather than 70, and reduced our hours down to the 12 -

14 per day range! Woo Hooo! We got our new shoes; the

design is slightly different now but nothing major.

>

> As for 's check up - hmm, I'm not sure what to say.

had the tendon-transfer surgery four years ago by Dr. Dietz. His

feet are very stiff, etc. and Dr. Ponseti said they are OK but the

look on his face and the tone of his voice said other wise......he

spent a great deal of time handling the feet, and he just didn't

seem happy with what he found but told me they were basically as

good as they were going to get. He only has 15 degrees of rotation

on one foot and 10 degrees on the other., almost zero range going up

and down and some other things he said I didn't quite catch because

he was talking to a doctor in training from Brazil. He asked me if

Dietz has seen since he was three yr. old and I said no (he's

never been around when we came back for check ups). Ponseti

wanted Dietz to look at and asked a nurse to get him but he

never did come look although I saw him n the hall a couple times.

But Ponseti kept saying stuff like, " I think Dr. Dietz should look

at these feet. " in such a way as he was displeased and wanted Dietz

to see the feet with his own two eyes. Maybe I'm making more of it

than there was and I certainly mean no disrespect to Dr. Dietz but I

was left feeling unsettled by it all. I've worried a lot about

's feet and I guess i was hoping to find out maybe I was

worried over nothing but it seems his tendon transfer results or

something anyway are not up to par and there's nothing left to be

done about it.

>

> s.

>

>

>

[Guest guest]

I'm glad you got good news on Everett's feet. But sorry to hear that

the news did not seem to be as good for . You would have

thought that Dr. Dietz would have came in and at least taken a quick

look. You do have to make an eleven hour trip after all.

Pam and (8-12-01)

> Hello,

> we made it to Iowa and back! Eleven hours up and twelve hours back

(several traffic jams around Kansas City). Dr. Ponseti was so

thrilled with Everett's progress! He just grinned ear to ear and

kept talking about how happy he was. Everett showed off pushing the

stool (on wheels) around the hall way. He reduced the braces to 60

degrees rather than 70, and reduced our hours down to the 12 - 14

per day range! Woo Hooo! We got our new shoes; the design

is slightly different now but nothing major.

>

> As for 's check up - hmm, I'm not sure what to say.

had the tendon-transfer surgery four years ago by Dr. Dietz. His

feet are very stiff, etc. and Dr. Ponseti said they are OK but the

look on his face and the tone of his voice said other wise......he

spent a great deal of time handling the feet, and he just didn't seem

happy with what he found but told me they were basically as good as

they were going to get. He only has 15 degrees of rotation on one

foot and 10 degrees on the other., almost zero range going up and

down and some other things he said I didn't quite catch because he

was talking to a doctor in training from Brazil. He asked me if

Dietz has seen since he was three yr. old and I said no (he's

never been around when we came back for check ups). Ponseti wanted

Dietz to look at and asked a nurse to get him but he never did

come look although I saw him n the hall a couple times. But Ponseti

kept saying stuff like, " I think Dr. Dietz should look at these

feet. " in such a way as he was displeased and wanted Dietz to see the

feet with his own two eyes. Maybe I'm making more of it than there

was and I certainly mean no disrespect to Dr. Dietz but I was left

feeling unsettled by it all. I've worried a lot about 's feet

and I guess i was hoping to find out maybe I was worried over nothing

but it seems his tendon transfer results or something anyway are not

up to par and there's nothing left to be done about it.

>

> s.

>

>

>

[Guest guest]

Good for you Tina.

Hugs

nne

To the world you might be one person, but to one person you just might be the

world "

" May the Lord Bless you and keep you,

May the Lord Make his face shine upon you, and give you Peace...Forever "

Breast Cancer Patients Soul Mates for Life

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http://health.groups.yahoo.com/group/AnxietyDepressionandBreastCancer

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The Cancer Club

www.cancerclub.com

> Good news

>

> Okay, so I applied for disability I also applied for SSI, I was told that

> this was standard. I got my disability last August, and because it would

> be

> so long before the disability back payment came through, my lawyer told

> me

> to request an SSI back payment, to get the money started coming in

> earlier.

> I did that. So I got a small payment, and I started getting my monthly

> payments earlier. All of this was deducted from my SSDI back payment.

> When

> I got the SSDI bck payment, there was some money I couldn't figure out

> where

> it went, but I didn't think much of it. Then I got another payment in

> January. They said my SSI back payment is broken up into three lumps.

> The

> first two lumps are smaller amounts, at six month intervals, and then the

> last lump is the remainder of what you are owed, again, six months later.

> I

> forgot that this payment is my third and final payment. I called social

> security today to find out when I get it and how much it is, and oh boy!

> I

> get it Saturday, and let's just say the amount is more than generous.

> Good

> news indeed!

>

> Tina

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