Intro

[Guest guest]

-

Chloe sounds like she's a tuff girl! It's amazing how tuff these little ones are. Our Hailey gives us so much strength watching how well she is dealing with things.

We had our follow up Thursday and he said we'll go back in to do the 2nd surgery in 3-6 months depending on how her body heals. Right now we're still fighting the infection that was back there, he said it was horrible. He has her on drops now trying to clear it up.

I am very glad that I found this group so early. She was diagnosed April 29th and I did research information, however I didn't share the diagnosis with the family until this week. I didn't want to scare them any more than what they were. I decided to share it and I'm glad I'm not carrying that stress around on my own now. It's scary reading stuff, but I feel better knowing things than being in the dark.

I hope Chloe continues to do well with the prothesis.

I'll be thinking of you guys!

Take Care

I guess I'm posting to introduce why I've joined this group.My 4 1/2 year old was recently diagnosed with cholesteatoma. Afterhaving tonsils & adenoids removed, 3 sets of tubes in her right earand 4 in her left ear she had a CT scan that diagnosed the problem.Our pediatrician has been great and our old doctor seemed not tocare, just continued to put tubes in our babies ears.We switched doctors at the beginning of the year, he put in "T" tubesthinking with a different type of tube it would help. When the bodyquickly rejected the tubes he knew the problem. We had a CT scandone and without knowing anything aobut them I was able to seesomething was wrong.We had our first surgery June 23rd 2008. My poor little girl wasunder for 2 hours and 45 minutes. They tried to save most of thehearing

bones, however were unable to.The doctor advised that this has been growing for years and is on theway to the brain. To make matters worse they weren't able to get allof it. They had to stop because her body wouldn't quit bleeding.So we have a follow up tomorrow and then we know that there areprobably at least 2 more surgeries to come.I didn't give the family the diagnosis until today, after reading myspouse and I decided we didn't want to scare everyone with all thereadings out there.After these last 2 weeks I've thought about it and they need to havethe option to read about this disease. It's very frightning for meand right now I'm just trying to stay very strong for my daughter.My oldest had 2 sets of tubes and is now healthy with no earproblems.I know our doctor was shaken when he got into her ear and found itwas larger than expected, when he came

out after surgery he wasvisibly shaken. He's become attached to our little girl.I know we are doing everything we can but it's still stressful whichI'm sure everyone of you feels the same.Anyway I saw this group out her today and thought it would be a goodidea to have the support of other people dealing with the same thingwe are.thanks for listening------------ --------- --------- ------

[Guest guest]

Your little one is so strong to take those stitches so well!

Family members get nervous sometimes, that's probably why your FIL

talked a lot. We had my sister & BIL with us when our surgeon came out

to the waiting area. I was so relieved to see him finally because

after 3 hrs the minutes dragged by like an hour each, with every

little thought about what might be taking so long. You know well how

hard it is when your child life is in another persons hands.

I'm sorry they couldn't get all of your dd's Ctoma. I'm sure it is

hard & they did not want her losing blood. Our Dr was visibly

exhausted but he thinks he got all of ds's ctoma. It was to in the

Eustachian tube.

Yes son is 10. He has summer off but back to school late Aug starting

5th grade. I am concerned about school while we wait for his 2nd

surgery & start the 1st on his left ear. His hearing is very poor in

both ears. I wear hearing aids (hereditary otosclerosis) & I do not

want that for him if we prevent it. Of course if the doc thinks he

should have them we will get them but they are not the comparison to

hearing. Maybe may need FM for now I hope. We have to talk to the Dr

about school at the follow up on Jly 21.

Take care & hugs to your little one. I'm glad we both found this list.

~Shell

> >

> > I guess I'm posting to introduce why I've joined this group.

> >

> > My 4 1/2 year old was recently diagnosed with cholesteatoma. After

> > having tonsils & adenoids removed, 3 sets of tubes in her right ear

> > and 4 in her left ear she had a CT scan that diagnosed the problem.

> >

> > Our pediatrician has been great and our old doctor seemed not to

> > care, just continued to put tubes in our babies ears.

> >

> > We switched doctors at the beginning of the year, he put in " T " tubes

> > thinking with a different type of tube it would help. When the body

> > quickly rejected the tubes he knew the problem. We had a CT scan

> > done and without knowing anything aobut them I was able to see

> > something was wrong.

> >

> > We had our first surgery June 23rd 2008. My poor little girl was

> > under for 2 hours and 45 minutes. They tried to save most of the

> > hearing bones, however were unable to.

> >

> > The doctor advised that this has been growing for years and is on the

> > way to the brain. To make matters worse they weren't able to get all

> > of it. They had to stop because her body wouldn't quit bleeding.

> >

> > So we have a follow up tomorrow and then we know that there are

> > probably at least 2 more surgeries to come.

> >

> > I didn't give the family the diagnosis until today, after reading my

> > spouse and I decided we didn't want to scare everyone with all the

> > readings out there.

> >

> > After these last 2 weeks I've thought about it and they need to have

> > the option to read about this disease. It's very frightning for me

> > and right now I'm just trying to stay very strong for my daughter.

> >

> > My oldest had 2 sets of tubes and is now healthy with no ear

> > problems.

> >

> > I know our doctor was shaken when he got into her ear and found it

> > was larger than expected, when he came out after surgery he was

> > visibly shaken. He's become attached to our little girl.

> >

> > I know we are doing everything we can but it's still stressful which

> > I'm sure everyone of you feels the same.

> >

> > Anyway I saw this group out her today and thought it would be a good

> > idea to have the support of other people dealing with the same thing

> > we are.

> >

> > thanks for listening

> >

> >

> >

>

[Guest guest]

Hey!

We had a followup for Chloe's revision surgery (she had an emergency mastoidectomy four weeks ago because of an infection called mastoiditis osteomyelitis, but the infection was so bad, he could barely see the landmarks, so he could not finish and did the revision last week). So, the news is no more hearing loss, and everything that was in there was either cholesteatoma or granuloma. The semicircular canals are not leaking: he was afraid because there was new erosion there.

We will deal with the prosthesis when she goes for a " second look " in six months--funny calling it that since it will be her seventh tympanoplasty. If all is well then, we'll deal with her hearing. She had a bizarre regrowth of the cholesteatoma in only five weeks this spring. It seems to be related to the infection. Anyway, you know it's bad when a guy who teaches for Harvard Medical School at one of the best teaching hospitals for ears in the country tells you he's never seen anything like this. The residents who attended the emergency mastoidectomy last month were still in shock when I saw them after the surgery!

She spent two weeks in the hospital, and we have been doing home infusion of antibiotics for 6 weeks now--3 days left and Chloe is thrilled to lose her picc line!

We chose to homeschool her last year for kindergarten, so the hearing loss did not affect her learning at all. I have noticed some of you are worried about that. I actually homeschooled all four of them ranging from preschool to second grade. It was an absolute blast, although, I think all but Chloe will go back to school this year. Things are still a little uncertain for her, and I will lose my mind trying to keep her calm after the prosthesis insertion with everyone else underfoot!

That is actually one of the worst parts of the prosthesis! You will need lots of books and movies!

It really is all so scary at first, but we just take one surgery at a time and try not to look too far down the road to what might happen!

One thing our surgeon does is call me from the or to go over what he did and saw. I also usually see him in the PACU. That way, I can ask any questions. We also never invite anyone to the hospital unless we are staying more than a day or two. I know that can be hard with inlaws, but the last thing Chloe wants to see is visitors after these surgeries!

Take care!

On Sun, Jul 13, 2008 at 12:14 AM, Neer <neermom@...> wrote:

-

Chloe sounds like she's a tuff girl! It's amazing how tuff these little ones are. Our Hailey gives us so much strength watching how well she is dealing with things.

We had our follow up Thursday and he said we'll go back in to do the 2nd surgery in 3-6 months depending on how her body heals. Right now we're still fighting the infection that was back there, he said it was horrible. He has her on drops now trying to clear it up.

I am very glad that I found this group so early. She was diagnosed April 29th and I did research information, however I didn't share the diagnosis with the family until this week. I didn't want to scare them any more than what they were. I decided to share it and I'm glad I'm not carrying that stress around on my own now. It's scary reading stuff, but I feel better knowing things than being in the dark.

I hope Chloe continues to do well with the prothesis.

I'll be thinking of you guys!

Take Care

I guess I'm posting to introduce why I've joined this group.My 4 1/2 year old was recently diagnosed with cholesteatoma. Afterhaving tonsils & adenoids removed, 3 sets of tubes in her right ear

and 4 in her left ear she had a CT scan that diagnosed the problem.Our pediatrician has been great and our old doctor seemed not tocare, just continued to put tubes in our babies ears.We switched doctors at the beginning of the year, he put in " T " tubes

thinking with a different type of tube it would help. When the bodyquickly rejected the tubes he knew the problem. We had a CT scandone and without knowing anything aobut them I was able to seesomething was wrong.

We had our first surgery June 23rd 2008. My poor little girl wasunder for 2 hours and 45 minutes. They tried to save most of thehearing bones, however were unable to.The doctor advised that this has been growing for years and is on the

way to the brain. To make matters worse they weren't able to get allof it. They had to stop because her body wouldn't quit bleeding.So we have a follow up tomorrow and then we know that there are

probably at least 2 more surgeries to come.I didn't give the family the diagnosis until today, after reading myspouse and I decided we didn't want to scare everyone with all thereadings out there.

After these last 2 weeks I've thought about it and they need to havethe option to read about this disease. It's very frightning for meand right now I'm just trying to stay very strong for my daughter.

My oldest had 2 sets of tubes and is now healthy with no earproblems.I know our doctor was shaken when he got into her ear and found itwas larger than expected, when he came out after surgery he was

visibly shaken. He's become attached to our little girl.I know we are doing everything we can but it's still stressful whichI'm sure everyone of you feels the same.Anyway I saw this group out her today and thought it would be a good

idea to have the support of other people dealing with the same thingwe are.thanks for listening------------ --------- --------- ------

[Guest guest]

Dear Shelli, I have a big confession to make.  You know those signs at the rides

that say, " If you have any trouble with your back, you should not go on this

ride " ?  Well, I did.  No problem with them.  I'd say he should brace himself

against something like the side of the box.  I wouldn't go on anything that will

take him upside down and don't have ANY experience with that. But, I did the

rides at Disney (Thunder Mountain, Space Mountain, Splash Mountain) with no

problems.  Worthy of note:  no ride at Disney World/Land go over 35m an hour. 

He'll be able to do just about everything he can do now.  (That's what the

surgeon told me, and it was true).  That should be great news for him!

 

Lana

From: Shelli Craig <shellic@...>

Subject: Intro

Scoliosis Treatment

Date: Sunday, August 31, 2008, 10:22 AM

I joined the group a few weeks ago and haven't had time to introduce

myself..

My son Josh has cerebral palsy and he's 14 years old. He's very small

- maybe 60lbs - and has scoliosis. He uses a power wheelchair for

mobility and doesn't walk independently at all. He's a typical kid and

in high school this year with the assistance of an aide who helps him

w/ physical things he can't do.

He had severe back pain the last half of the school year last year and

we discovered his scoliosis had progressed and the doctor wants to do

the spinal fusion surgery in October. 8 hour surgery.

He's really okay with it but he's worried he'll never be able to do

anything fun - we're almost done building a pool w/ a slide and we go

to Disney World and he likes to ride all the roller coasters... so

I've told him it will improve his pain, but it may change what he's

able to do also. He's been through many surgeries, but this one seems

scarier to me than the others.

I have friends w/ older kids who have had this surgery and they say it

improves their pain so much that it's worth it. I just hope that's

right.

--

Shelli in NC * http://web.mac.com/shellic * DH -

Kids: Jane XiaoZhen 14; Josh, 14; , 14; MacKenzie, 10;

Jack HaiChao, 7; belle Ning, 5; Emma-Grace, 4.

" I don¢t have a problem with caffeine. I have a problem without

caffeine! "

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

[Guest guest]

Hi Dot - You have every reason in the world to be scared to death.  The vast

majority of TKR go along without a hitch. However there are some of us that

would trade everything we have to go back to our " bone to bone " knee. 

 

It has been 28 months, 10 days since my right leg TKR and I am one that would go

back to " bone to bone " right now without question.  I have experienced as much

or more pain since my TKR than before.  I have knee pain, ranging from 3 to 8+,

24/7-365.  It keeps me awake at night most nights.  The throbbing pain centers

around the prosthesis and then goes down the front of my leg to the top of my

foot and ends just in front of my heel.  The right side of my leg is semi-numb.

 

My medial collateral ligament broke not long after the surgery and now the

little bugger keeps re-attaching itself to the bone, only to be broken out on a

regular (monthly + ) basis.  When the  " re-attachment " pulls out it takes a

little chunk of bone with it.  Since it is a broken bone every time the pain is

just as intense as a broken bone. 

 

Now, to add insult to injury, I have developed an audible and palpable noise in

my fake knee when I sit down or stand up.  There has been an increase in pain

since the noise came along.

 

Pain medication is a problem, since it keeps me awake and alters my personality

(it makes me very angry).  I suspect that because of the pain medication and the

pain my friends don't call or visit at all.  As far as I can tell anger is a

common problem with pain and pain medication.

 

Remember that most TKR are a welcome relief to most people.  But there is always

the chance that yours will be like mine and you will wish you could have a " do

over " .  Think long and hard about it.   

 

Val in Idaho

 

From: Dot Sheltie <dotsheltie@...>

Subject: intro

Joint Replacement

Date: Friday, April 10, 2009, 7:09 AM

Hi all,

I am Dot,65,very active from Florida. I am going to have a total knee

replacement may 27.I'm scared to death.I want any and all the help I can get to

make it past this.Hope to hear from you soon.

Carol

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

Val,

Can't your doctor fix this?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

I don't think that my surgeon has a clue as to what to do Dot.  That is why I

joined this group, to see if there was someone that could help.  So far that

hasn't happened.

 

I wanted to see Dr.Coon in Red Bluff CA.  He is one of the best in the world but

he won't give me the time of day.   The same goes for a few others I have

contacted.  The reply is always to " go back to your surgeon " .

 

What irritates me is that I seem to have run into a stone wall as far as

treatment.  Pain medication is all that is offered.  

 

Val in Idaho

 

 

 

--

From: Dot Sheltie <dotsheltie@...>

Subject: Re: intro

Joint Replacement

Date: Saturday, April 11, 2009, 6:40 PM

Val,

Can't your doctor fix this?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

No " new " surgeon is going to see you until you go back to the surgeon that

did the surgery. You NEED to go back to that surgeon rather than assume he

doesn't know what to do.

_____

From: Joint Replacement

[mailto:Joint Replacement ] On Behalf Of Val Lane

Sent: Sunday, April 12, 2009 12:20 AM

Joint Replacement

Subject: Re: intro

I don't think that my surgeon has a clue as to what to do Dot. That is why

I joined this group, to see if there was someone that could help. So far

that hasn't happened.

I wanted to see Dr.Coon in Red Bluff CA. He is one of the best in the world

but he won't give me the time of day. The same goes for a few others I

have contacted. The reply is always to " go back to your surgeon " .

What irritates me is that I seem to have run into a stone wall as far as

treatment. Pain medication is all that is offered.

Val in Idaho

--

From: Dot Sheltie <dotsheltie (DOT) <mailto:dotsheltie%40> com>

Subject: Re: intro

Total_Joint_ <mailto:Joint Replacement%40>

Replacement

Date: Saturday, April 11, 2009, 6:40 PM

Val,

Can't your doctor fix this?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

Like I said Harold, my surgeon apparently does not have a clue of what to do.  I

have been back to him several times with my pain complaint.  My last visit was

11/08.  The X-rays only show the MCL break(s) and nothing else " wrong " .  Each

time he has little to say.

 

Unlike your experience I have found that TKR pain problems are not all all that

uncommon.  Three out of the six people with TKR I know have had pain problems. 

My cousin refused to have her other knee done so long she ended up in a wheel

chair.  Another fellow I know is still hobbling around  " bone to bone " rather

than go through the TKR trauma again.  I am the third of the group.

 

Since people I know have a 50% excessive pain rate with TKR I assumed that

someone in this group would have some words of wisdom.  Granted I only know of

the 6 TKR so it isn't a statically valid sample.

 

I should note that I have a very, very high tolerance for pain.  When I was in

PT and getting " e-stem " my PT could not believe the high level of power that I

used. 

 

I just wish that someone would have been upfront with me prior to my TKR.  Some

go wrong and that can have a devastating impact on your life.  

 

Val in Idaho

 

From: Dot Sheltie <dotsheltie (DOT) <mailto:dotsheltie%40> com>

Subject: Re: intro

Total_Joint_ <mailto:Joint Replacement%40>

Replacement

Date: Saturday, April 11, 2009, 6:40 PM

Val,

Can't your doctor fix this?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

Hi Val.

I might have forgotten but what seems to be your problem with your knee now? How

long ago was this done? Are in a pain all the time? Did you do all your rehab? I

met a fellow at are dog park and he is still having a problem after a year but

his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my blood

3 days before.Next month I go for a lot of blood tests and things. If you guys

pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

Dot, you will be fine.just pray and think positive.you cannot let fear and

the possibility of a problem dictate.these complications, including the 2

infections I had, are by far the RARE exception and the overwhelming, vast

majority of tkr's go just fine. Do your exercises prior to the surgery,

take your pain medicine, work hard in physical therapy.you will be just

fine.

Harold

PS: And yes, I do pray and I am and will be praying for you.

_____

From: Joint Replacement

[mailto:Joint Replacement ] On Behalf Of Dot Sheltie

Sent: Monday, April 13, 2009 6:05 PM

Joint Replacement

Subject: Re: intro

Hi Val.

I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after

a year but his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If

you guys pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

Harold thank you for the prayers.I am doing the exercises now plus my walking.

DOT

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

You're welcome to call me if you have specific questions you'd like to talk

about or you can e-mail me directly at haroldusc@... I've had

multiple knee surgeries on both knees, replacements on both knees with

infection involved in 1 knee.I'm currently doing fine though and you will be

fine.

Harold

_____

From: Joint Replacement

[mailto:Joint Replacement ] On Behalf Of Dot Sheltie

Sent: Monday, April 13, 2009 7:07 PM

Joint Replacement

Subject: RE: intro

Harold thank you for the prayers.I am doing the exercises now plus my

walking.

DOT

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

Thanks for thinking of me Dot.

 

My surgery was done on Nov. 30, 2006, 28 months, 14 days ago.  I was in superb

physical shape when I had my surgery.  I " lost " the first two weeks to what can

only be described as a  " drug overdose " , because I don't recall any of that

time.  I spent 5 days in the hospital and 16 days in a " half way house " doing

extensive PT and returned home just before Christmas.  I continued PT for a

couple of months after my surgery.

 

As I said earlier my pain is 24/7/365.  It is some what different than the pain

of being " bone to bone " but at least my " bone to bone " pain allowed me to sleep

at night.  My pain varies from about a " 3 " to an " 8 " for me, but I should note

that my pain threshold is much higher than most folks. 

 

My pain has impacted my social life in a major negative manner.  I suspect that

my wife of 38 years is probably still considering leaving me.  My daughter does

not call me.  My friends have quit calling and quit visiting our house.  The

pain (and pain medication) makes me a less than ideal person to visit with.

 

It hurts to stand up.  It hurts when I sit down.  It has a throbbing pain all

the time.  The pain, if it isn't the first thing on my mind, it is ALWAYS next

in line.  Did I mention that it keeps me awake at night?

 

After I had my surgery (an found my constant pain) I discovered another guy with

the same problem, all in a town of 800 people (around 3500 for the whole

county). 

 

I have been back to my doctor more times than I would like to count.  Each

visit consists of X-rays and a " pat on the hand "  with statements like " your TKR

is just fine "  ; " I don't know why you hurt all the time "   and " Here, have some

pain pills " .  It costs me over $300 for each visit (mileage/motel/food etc.) 

Since my TKR was due to an on the job injury the whole thing was supposed to be

" covered " by workman's comp, but they have been less than helpful with my

situation.

 

I was forced to retire early due to the knee injury, (I was in law

enforcement) so finances are not always what they should be.  If I sound bitter,

well, I am pretty angry about the situation.

 

As do a " redo " of my knee:  That would scare the living crap out of me.  Cutting

someone's leg bones " off " and then putting a metal joint in their place just

seems wrong to me now.  There should be some method of covering the joint ends

without doing the mass destruction that is now called TKR.  After my experience

I wouldn't let the butchers near my leg again.

 

I pray that your will make the right decision Dot.  If you do have a TKR I pray

that it goes well.  I wouldn't wish the hell that I am going through on anyone.

 

Val in Idaho

 

 

 

 

 

 

 

 

 

 

 

From: Dot Sheltie <dotsheltie@...>

Subject: Re: intro

Joint Replacement

Date: Monday, April 13, 2009, 4:05 PM

Hi Val.

I might have forgotten but what seems to be your problem with your knee now? How

long ago was this done? Are in a pain all the time? Did you do all your rehab? I

met a fellow at are dog park and he is still having a problem after a year but

his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my blood

3 days before.Next month I go for a lot of blood tests and things. If you guys

pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

Just out of curiosity, have you been to a rheumatologist? Is it possible

that the pain you are experiencing now is actually rheumatoid arthritis

rather than the TKR joint? I only ask because I have wondered the same

thing myself. I was being treated for both osteoarthritis and rheumatoid

arthritis before I had the TKRs, and I wonder if the rheumatoid arthritis

can still effect them. I haven't been back to my rheumatologist yet to ask

him. It has been 4 months since my bilateral TKRs. I am improving very

slowly, so I am still going in the right direction, even though I expected

to be off the Percocet and out of pain by now.

Chrissie

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

Re: intro

Joint Replacement

Date: Monday, April 13, 2009, 4:05 PM

Hi Val.

I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after

a year but his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If

you guys pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

Chrissie,I was to one of those doctors years ago.

She said I had fibro? We have a lot of strange doctors in the deep south. If you

do not take the pain pill can you funchion? Also how long have you been on the

pain pills?Do you do your excerises?OT/ what your dogs name? I'm so flad we have

this list.

Dot

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

I am being treated for osteoarthritis with Celebrex.  My knee pain is very

different than my arthritis pain.  When I do finally take pain pills they

actually eliminate my arthritis pain completely.  The pain pills only dull the

knee pain a little.  I have always been able to feel the foreign object (the

prosthesis) in my knee; where it begins and where it ends. 

 

One way to describe it is that my prosthesis has always felt like I have a large

sliver in my knee that is ready to be removed.  None of the many X-rays have

shown that anything is wrong.  Perhaps they will on my next visit. 

 

I am sure that my surgeon is very tired of seeing me. 

 

Val in Idaho

 

 

 

From: Dot Sheltie <dotsheltie@...>

Subject: Re: intro

Joint Replacement

Date: Monday, April 13, 2009, 4:05 PM

Hi Val.

I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after

a year but his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If

you guys pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

" There should be some method of covering the joint ends without doing the mass

destruction that is now called TKR " .

My OS, Dr. Coon, is starting to do knee resurfacings where the bones are not cut

but instead smoothed down and fit into a metal prosthesis. I've had both hips

resurfaced and there is hardly any pain compared to a surgery with bone cutting.

And no restrictions after recovery.

I sure don't consider my OS a butcher, he is highly skilled. I have met others

who I would consider butchers. The OS's with the highest volume of surgeries

like yours is about the only indicator of good outcomes there is. It should be

over 1,000.

About your pain, I would get a second opinion from an OS that is not connected

to your OS in any way and is known to be an excellent knee surgeon.

I would also start going to a pain clinic, you will need a doc's referral to get

in, I would rather have this referral than a pat on the hand.

I would be pretty PO'd at my OS if I had had pain this long, and no amount of

hand patting would suffice for me.

Choice of surgeon is number one priority for me, the factor that determines your

outcome the most. I'm not impressed by your surgeon from what you are saying

here. They are afraid of medical malpractice suits to are trying to gently make

you go away until the statute of limitations for suit are past.

Good luck,

Hollie

> My surgery was done on Nov. 30, 2006, 28 months, 14 days ago. 

> As I said earlier my pain is 24/7/365.  It is some what different than the

pain of being " bone to bone " but at least my " bone to bone " pain allowed me to

sleep at night.  My pain varies from about a " 3 " to an " 8 " for me, but I should

note that my pain threshold is much higher than most folks. 

>  

> My pain has impacted my social life in a major negative manner.  I suspect

that my wife of 38 years is probably still considering leaving me.  My daughter

does not call me.  My friends have quit calling and quit visiting our house. 

The pain (and pain medication) makes me a less than ideal person to visit with.

>  

> It hurts to stand up.  It hurts when I sit down.  It has a throbbing pain all

the time.  The pain, if it isn't the first thing on my mind, it is ALWAYS next

in line.  Did I mention that it keeps me awake at night?

>  

> After I had my surgery (an found my constant pain) I discovered another guy

with the same problem, all in a town of 800 people (around 3500 for the whole

county). 

>  

> I have been back to my doctor more times than I would like to count.  Each

visit consists of X-rays and a " pat on the hand "  with statements like " your TKR

is just fine "  ; " I don't know why you hurt all the time "   and " Here, have some

pain pills " .  It costs me over $300 for each visit (mileage/motel/food etc.) 

Since my TKR was due to an on the job injury the whole thing was supposed to be

" covered " by workman's comp, but they have been less than helpful with my

situation.

>  

> I was forced to retire early due to the knee injury, (I was in law

enforcement) so finances are not always what they should be.  If I sound bitter,

well, I am pretty angry about the situation.

>  

> As do a " redo " of my knee:  That would scare the living crap out of me. 

Cutting someone's leg bones " off " and then putting a metal joint in their

place just seems wrong to me now.  There should be some method of covering the

joint ends without doing the mass destruction that is now called TKR.  After my

experience I wouldn't let the butchers near my leg again.

>  

> I pray that your will make the right decision Dot.  If you do have a TKR I

pray that it goes well.  I wouldn't wish the hell that I am going through on

anyone.

>  

> Val in Idaho

>  

>  

>  

>  

>  

>  

>  

>  

>  

>  

>  

>

>

>

>

> From: Dot Sheltie <dotsheltie@...>

> Subject: Re: intro

> Joint Replacement

> Date: Monday, April 13, 2009, 4:05 PM

>

>

> Hi Val.

> I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after a

year but his doctor said he is going to redo it .

> I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If you

guys pray then I can use all I can get.

> Dot

> Florida

>

> 'Until one has loved an animal, part of their soul remains unawakened'

>

>

>

>

>      

>

>

[Guest guest]

I was on IV infusions of Remicade for the rheumatoid arthritis before my TKR

surgery. Since the Remicade decreases your immunities, I am kind of afraid

to go back on it. I sure don't want to get an infection in my knees. I keep

wondering about this situation.

Chrissie

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

Re: intro

Joint Replacement

Date: Monday, April 13, 2009, 4:05 PM

Hi Val.

I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after

a year but his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If

you guys pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

Did you have your surgery done in Idaho?

Has anyone checked you out for back pain, as in sciatica?

I am so sorry you are going through this. Chronic pain is debilitating, I have

been there.

I know I have missed alot of discussion, please forgive if everyone knows your

situation but me.

I can give you firsthand info about highly competent OS in Portland,

Best Wishes,

Patti

Patti Widener NCTM

Widener Piano Studio

happykeys88@...

EMAILING FOR THE GREATER GOOD

Join me

Joint Replacement

From: rosey9932000@...

Date: Tue, 14 Apr 2009 17:11:11 +0000

Subject: Re: intro

" There should be some method of covering the joint ends without doing the

mass destruction that is now called TKR " .

My OS, Dr. Coon, is starting to do knee resurfacings where the bones are not cut

but instead smoothed down and fit into a metal prosthesis. I've had both hips

resurfaced and there is hardly any pain compared to a surgery with bone cutting.

And no restrictions after recovery.

I sure don't consider my OS a butcher, he is highly skilled. I have met others

who I would consider butchers. The OS's with the highest volume of surgeries

like yours is about the only indicator of good outcomes there is. It should be

over 1,000.

About your pain, I would get a second opinion from an OS that is not connected

to your OS in any way and is known to be an excellent knee surgeon.

I would also start going to a pain clinic, you will need a doc's referral to get

in, I would rather have this referral than a pat on the hand.

I would be pretty PO'd at my OS if I had had pain this long, and no amount of

hand patting would suffice for me.

Choice of surgeon is number one priority for me, the factor that determines your

outcome the most. I'm not impressed by your surgeon from what you are saying

here. They are afraid of medical malpractice suits to are trying to gently make

you go away until the statute of limitations for suit are past.

Good luck,

Hollie

> My surgery was done on Nov. 30, 2006, 28 months, 14 days ago.

> As I said earlier my pain is 24/7/365. It is some what different than the

pain of being " bone to bone " but at least my " bone to bone " pain allowed me to

sleep at night. My pain varies from about a " 3 " to an " 8 " for me, but I should

note that my pain threshold is much higher than most folks.

>

> My pain has impacted my social life in a major negative manner. I suspect

that my wife of 38 years is probably still considering leaving me. My daughter

does not call me. My friends have quit calling and quit visiting our house.

The pain (and pain medication) makes me a less than ideal person to visit with.

>

> It hurts to stand up. It hurts when I sit down. It has a throbbing pain all

the time. The pain, if it isn't the first thing on my mind, it is ALWAYS next

in line. Did I mention that it keeps me awake at night?

>

> After I had my surgery (an found my constant pain) I discovered another guy

with the same problem, all in a town of 800 people (around 3500 for the whole

county).

>

> I have been back to my doctor more times than I would like to count. Each

visit consists of X-rays and a " pat on the hand " with statements like " your TKR

is just fine " ; " I don't know why you hurt all the time " and " Here, have some

pain pills " . It costs me over $300 for each visit (mileage/motel/food etc.)

Since my TKR was due to an on the job injury the whole thing was supposed to be

" covered " by workman's comp, but they have been less than helpful with my

situation.

>

> I was forced to retire early due to the knee injury, (I was in law

enforcement) so finances are not always what they should be. If I sound bitter,

well, I am pretty angry about the situation.

>

> As do a " redo " of my knee: That would scare the living crap out of me.

Cutting someone's leg bones " off " and then putting a metal joint in their place

just seems wrong to me now. There should be some method of covering the joint

ends without doing the mass destruction that is now called TKR. After my

experience I wouldn't let the butchers near my leg again.

>

> I pray that your will make the right decision Dot. If you do have a TKR I

pray that it goes well. I wouldn't wish the hell that I am going through on

anyone.

>

> Val in Idaho

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> From: Dot Sheltie <dotsheltie@...>

> Subject: Re: intro

> Joint Replacement

> Date: Monday, April 13, 2009, 4:05 PM

>

>

> Hi Val.

> I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after a

year but his doctor said he is going to redo it .

> I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If you

guys pray then I can use all I can get.

> Dot

> Florida

>

> 'Until one has loved an animal, part of their soul remains unawakened'

>

>

>

>

>

>

>

[Guest guest]

Val I too have that kind of pain but it lit up like a xmas tree when doing the

ct scan with dye...it feels like walking on glass.the Dr said my replacement

must be loose.....tigs

From: Dot Sheltie <dotsheltie (DOT) com>

Subject: Re: [Total_Joint_ Replacement] intro

Total_Joint_ Replacement

Date: Monday, April 13, 2009, 4:05 PM

Hi Val.

I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after

a year but his doctor said he is going to redo it .

I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If

you guys pray then I can use all I can get.

Dot

Florida

'Until one has loved an animal, part of their soul remains unawakened'

     

[Guest guest]

To anyone.

How soon can you get up yourself to use the bathroom?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

With all three of my replacements thus far,2 TKR's and 1THR, I was getting up

without the nurses help by the time I left the hospital, of course with my

walker. You must have a raised toilet seat. The hip was a bit trickier, but the

hospital PT helped me to be able to move my operated leg on my own across the

bed and raise to a sitting position on my own. (the trick to getting out of

bed). It is amazing how much the twice daily PT helped me in the hospital.

I know it is different for each one of us, this is how my recovery went.

Patti

Patti Widener NCTM

Widener Piano Studio

happykeys88@...

EMAILING FOR THE GREATER GOOD

Join me

Joint Replacement

From: dotsheltie@...

Date: Tue, 14 Apr 2009 14:50:26 -0700

Subject: RE: intro

To anyone.

How soon can you get up yourself to use the bathroom?

Dot

'Until one has loved an animal, part of their soul remains unawakened'

[Guest guest]

Yes, it was done in Idaho on 11/30/06.  I first contacted Dr. Coon in in Red

Bluff CA in an attempt to have him do the surgery.  He refused to see me.  I was

told that it was because it is a " workman's comp " case.

 

I have far exceeded workman's comp's normal costs and normal time-line for

recovery.  Consequently workman's comp fights tooth and nail to keep from

spending any more money on my case.  The " get an attorney " idea is fine if one

has the ready cash to spend and lose.  My career was in Federal law enforcement

and a small part of my job included working on tort claims for and against the

Government.  The Federal Government will outspend anybody in defending against

such tort claims, even if they KNOW they are wrong.  It takes someone on the

" inside " to do battle for you.  I know because I was that " inside " guy one

time.  Even with my help it took the victim 3 years and a few thousand dollars

to fight them off.

 

I do have back pain, something that comes with being in law enforcement

and packing 27 extra pounds of duty belt, vest and gear for so many years.  I

have arthritis in my lower back.  No, the knee pain isn't from my back, it is

from having a foreign body for a " knee " .

 

" Val I too have that kind of pain but it lit up like a xmas tree when doing the

ct scan with dye...it feels like walking on glass.the Dr said my replacement

must be loose.....tigs "   No, the knee isn't loose, or at least it wasn't in

11/08 when I had my last visit with my surgeon.

 

With any luck I will be visiting my surgeon again in a few weeks.  Perhaps he

will find it in his heart to try to get workman's comp to send me to someone

else, since he hasn't a clue of what to do.   Without his blessing I am dead in

the water.  So far I haven't found another doctor that will even speak to me

because of the complications of workman's comp and chronic pain.

 

We are leaving for home tomorrow (from Red Bluff to Idaho) after our snowbird

winter here and will be off line for a few days.

 

Val in Idaho

 

 

>

>

> From: Dot Sheltie <dotsheltie@...>

> Subject: Re: intro

> Joint Replacement

> Date: Monday, April 13, 2009, 4:05 PM

>

>

> Hi Val.

> I might have forgotten but what seems to be your problem with your knee now?

How long ago was this done? Are in a pain all the time? Did you do all your

rehab? I met a fellow at are dog park and he is still having a problem after a

year but his doctor said he is going to redo it .

> I've got a lot ready except the bath chair and potty lift.Have to give my

blood 3 days before.Next month I go for a lot of blood tests and things. If you

guys pray then I can use all I can get.

> Dot

> Florida

>

> 'Until one has loved an animal, part of their soul remains unawakened'

>

>

>

>

>       

>

>

[Guest guest]

I was getting up on my own, with use of walker while in hospital. At

first nurses helped me get up and down Then I went by myself and used call

button to return and then was on my own.

I was surprised that I had to ask for a walker (which then occasionally

disappeared from my room) and for a raised toilet seat since the bathroom

had a rather low toilet (go figure!). IMO these should have been in place.

If you have a caregiver with you at the hospital they might check for these

things in advance so you¹ll have what you need. Someone suggested a commode

by the bed. But for me the trick was in the getting up and down and the

short waddle to the bathroom was minor in comparison.

Your mileage may vary. Keep getting whatever help and resources you need

as long as you need it.

Jackie

On 4/14/09 2:50 PM, " Dot Sheltie " <dotsheltie@...> wrote:

>

>

>

>

>

> To anyone.

> How soon can you get up yourself to use the bathroom?

> Dot

>

> 'Until one has loved an animal, part of their soul remains unawakened'

>

>