Questions

[Guest guest]

What are the restrictions after TKR heals? No skiing, I guess...what

else?

Hollie

> Sherry,

>

> It does hurt after the surgery, considerably, but it's also so

worth it. I

> was limping constantly and always in pain and without energy

because it

> exhausted me before and now I am pain free. I mean occasionally I

still get

> a little stiffness but I can walk for 10 hours (Disney World less

than a

> year after surgery) and it's no big deal. My feet wear out before

my knee

> now.

>

> It's really doable - the recovery I mean. It gets better each day

and even

> at two months post-op you will find yourself walking like you

haven't in

> years.

>

>

>

>

> > questions

> >

> >

> >

> >

> > I am suppose to have a knee replacement would like

> > topeople that have had thissherry

> >

> h__________________________________________________________Never

> > miss a thing. Make your home page.

> > http://www./r/hs

> >

> >

> >

> >

> >

> >

>

> sherry h

>

> __________________________________________________________

> Never miss a thing. Make your home page.

> http://www./r/hs

>

[Guest guest]

It might depend on your doctor and your appliance but I don't run or do other high-impact exercise. I think you would actually be able to but I don't want to damage the appliance or it's connection to my bone or unduly wear it out early. I wasn't running before so it's not something I needed to return to. I just wanted to be able to walk and move without pain.

I don't really kneel either. I could do it but it feels strange and a tiny bit painful. But I don't think kneeling will hurt the TKR. The websites for the particular appliances tell you what you can and can't do.

> > questions> >> >> >> >> > I am suppose to have a knee replacement would like> > topeople that have had thissherry> >> h__________________________________________________________Never> > miss a thing. Make your home page.> > http://www./r/hs> >> >> >> >> >> >> > sherry h> > __________________________________________________________> Never miss a thing. Make your home page.> http://www./r/hs>

[Guest guest]

HI sHERRY,

Post surgery you can expect a good deal of pain, and PT can be a challenge. But, the docs are good at managing the drugs that will help you through that. By about the fourth week post op I can honestly say that the pain is substantially decreased, not nearly what you experience with bone on bone prior to surgery. The pain dwindles as each week goes by. Even if you overdo and the knee swells the pain is more of an ache than the miserable bone on bone that most of us experienced. Even though I had some complications, I will do my other knee.Judy Ferland Colorado

What are the restrictions after TKR heals? No skiing, I guess...what else?Hollie> Sherry,> > It does hurt after the surgery, considerably, but it's also so worth it. I> was limping constantly and always in pain and without energy because it> exhausted me before and now I am pain free. I mean occasionally I still get> a little stiffness but I can walk for 10 hours (Disney World less than a> year after surgery) and it's no big deal. My feet wear out before my knee> now.> > It's really doable - the recovery I mean. It gets better each day and even> at two months post-op you will find yourself walking like you haven't in> years.> > > > > > questions> >> >> >> >> > I am suppose to have a knee replacement would like> > topeople that have had thissherry> >> h__________________________________________________________Never> > miss a thing. Make your home page.> > http://www./r/hs> >> >> >> >> >> >> > sherry h> > __________________________________________________________> Never miss a thing. Make your home page.> http://www./r/hs>

[Guest guest]

My orthopedic surgeon told me the only thing that he would not let me do after recovery was running. I am not particularly athletic but one of the few things that I enjoyed a few years ago was downhill skiing. I asked specifically about downhill skiing and was told that that would be OK.

I am three months out and nothing other than walking is still on the horizon at this point, but I am hoping that other things become greater possibilities later on.

[Total_Joint_ Replacement]> > questions> >> >> >> >> > I am suppose to have a knee replacement would like> > topeople that have had thissherry> >> h___________ _________ _________ _________ _________ _________ __Never> > miss a thing. Make your home page.> > http://www.. com/r/hs>

>> >> >> >> >> >> > sherry h> > ____________ _________ _________ _________ _________ _________ _> Never miss a thing. Make your home page.> http://www.. com/r/hs>

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[Guest guest]

Sherry:

I think that there is wide variability with success on TKR but the vast majority of patient find themselves much improved. I had bilateral TKR done three months ago and I was bone to bone on the right knee and getting there on the left. The pain after hospitalization has been minimal. I have been doing rehab outpatient three times per week and that has been reasonable. I am back to work full time as an administrator so my standing/walking has been reasonable, but I am fully able to work (although a lot of my work is sitting at a desk...).

Here is what I can tell you. I have done behavioral science research for the past roughly 40 years. I do and have done a lot of publishing so I am used to the research literature. Before I decided to do my bilateral TKR, I read a lot of the scientific literature. The most helpful thing I found was what is called a meta-analysis that was published by a big government health institute. I am doing this out of memory so may be off in some details, but this is close.

The meta-analysis covered in excess of 100 scientific articles published in this country and overseas on various aspects of TKR procedure. A meta-analysis is a study of many studies. Most research studies on TKR include one or more survey instruments which have been designed to assess people's expectations for outcome from TKR. The main surveys (there are four or five main survey schedules) are scored on a 100 point scale with 0 being very low or negative expectations and 100 being very high expectations. There are also comparable surveys which index people's satisfaction after having the surgery done, again on a 100 point scale. Here is my memory of the overview of all those studies.

Patients ratings of their knees before TKR were in the low to mid 30s on the scale. Three months after the surgery, their ratings averaged in the low to mid 50s on the scale. Six months after the surgery, their ratings averaged in the 70s, and at one year after the surgery, their ratings averaged in the low to mid 90s.

What that told me was that rehab from TKR was going to be a 6 month to a year process and although most patients experienced significant improvement within 3 months, the biggest gains were going to be seen 6 months to a year after the surgery. I am 3 months out and feel much better. My left knee is doing fine and I have good range of motion. My right knee which was much worse to begin with, has a low level of pain, some swelling and my range of motion is no better than 90 degrees, and frankly, I am worried about it, since one needs about 110 to 115 degree of motion to walk down stairs easily. What is unclear is how much improvement I am going to get on my right knee with the passage of time (reduced swelling, etc.). One complication is the emergence of scar tissue which can limit motion. I believe that this is what has happened to my right knee. I see my surgeon again Monday and am going to get his opinion.

Now those scores are averages, and averages cover a lot of variability, and it is clear that one year out, some people are not doing well. I have met several in rehab who are a year out and their knees are no better or worse than they were before the surgery, and they are looking at having to have more work done on them. However, it is also clear that the vast majority of the patients are quite happy with their new knees 12 months later. Overall, that data sounded pretty good to me.

Find a good surgeon, and let them give your their honest opinion on what you can expect and then go for it. Don't be afraid to ask around. I found in my location that there were several OS who were known as knee experts, but one had a real name for excellent actual work and excellent outcomes. Also, his incisions were known to be very neat and straight and to "look" better after recovery. I went with the really "neat scar guy with an excellent reputation".

[Total_Joint_ Replacement]> questions> > > > > I am suppose to have a knee replacement would like> topeople that have had thissherry>h___________ _________ _________ _________ _________ _________ __Never> miss a thing. Make your home page.> http://www.. com/r/hs > > > > > > sherry h____________ _________ _________ _________ _________ _________ _Never miss a thing. Make your home page. http://www.. com/r/hs

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[Guest guest]

,

I will speak to one comment you made about how much more recovery you can expect when at 3 months you are having 90 degree flexion. You can expect a lot. I don't remember my numbers but I know that I had PT through about month three after surgery and have continued to get more and more flexion. I'm now just past a year and my TKR knee (right) can bend as much as my left knee that hasn't had surgery. As you continue to use it and the swelling goes down (the internal swelling seems to take quite a while) you will continue to see improvement. I hardly think about that knee now in terms of bending or walking up and down stairs.

-----Original Message-----From: Joint Replacement [mailto:Joint Replacement ]On Behalf Of Sent: Saturday, March 15, 2008 11:53 AMJoint Replacement Subject: Re: questions

Sherry:

I think that there is wide variability with success on TKR but the vast majority of patient find themselves much improved. I had bilateral TKR done three months ago and I was bone to bone on the right knee and getting there on the left. The pain after hospitalization has been minimal. I have been doing rehab outpatient three times per week and that has been reasonable. I am back to work full time as an administrator so my standing/walking has been reasonable, but I am fully able to work (although a lot of my work is sitting at a desk...).

Here is what I can tell you. I have done behavioral science research for the past roughly 40 years. I do and have done a lot of publishing so I am used to the research literature. Before I decided to do my bilateral TKR, I read a lot of the scientific literature. The most helpful thing I found was what is called a meta-analysis that was published by a big government health institute. I am doing this out of memory so may be off in some details, but this is close.

The meta-analysis covered in excess of 100 scientific articles published in this country and overseas on various aspects of TKR procedure. A meta-analysis is a study of many studies. Most research studies on TKR include one or more survey instruments which have been designed to assess people's expectations for outcome from TKR. The main surveys (there are four or five main survey schedules) are scored on a 100 point scale with 0 being very low or negative expectations and 100 being very high expectations. There are also comparable surveys which index people's satisfaction after having the surgery done, again on a 100 point scale. Here is my memory of the overview of all those studies.

Patients ratings of their knees before TKR were in the low to mid 30s on the scale. Three months after the surgery, their ratings averaged in the low to mid 50s on the scale. Six months after the surgery, their ratings averaged in the 70s, and at one year after the surgery, their ratings averaged in the low to mid 90s.

What that told me was that rehab from TKR was going to be a 6 month to a year process and although most patients experienced significant improvement within 3 months, the biggest gains were going to be seen 6 months to a year after the surgery. I am 3 months out and feel much better. My left knee is doing fine and I have good range of motion. My right knee which was much worse to begin with, has a low level of pain, some swelling and my range of motion is no better than 90 degrees, and frankly, I am worried about it, since one needs about 110 to 115 degree of motion to walk down stairs easily. What is unclear is how much improvement I am going to get on my right knee with the passage of time (reduced swelling, etc.). One complication is the emergence of scar tissue which can limit motion. I believe that this is what has happened to my right knee. I see my surgeon again Monday and am going to get his opinion.

Now those scores are averages, and averages cover a lot of variability, and it is clear that one year out, some people are not doing well. I have met several in rehab who are a year out and their knees are no better or worse than they were before the surgery, and they are looking at having to have more work done on them. However, it is also clear that the vast majority of the patients are quite happy with their new knees 12 months later. Overall, that data sounded pretty good to me.

Find a good surgeon, and let them give your their honest opinion on what you can expect and then go for it. Don't be afraid to ask around. I found in my location that there were several OS who were known as knee experts, but one had a real name for excellent actual work and excellent outcomes. Also, his incisions were known to be very neat and straight and to "look" better after recovery. I went with the really "neat scar guy with an excellent reputation".

[Total_Joint_ Replacement]> questions> > > > > I am suppose to have a knee replacement would like> topeople that have had thissherry>h___________ _________ _________ _________ _________ _________ __Never> miss a thing. Make your home page.> http://www.. com/r/hs > > > > > > sherry h____________ _________ _________ _________ _________ _________ _Never miss a thing. Make your home page. http://www.. com/r/hs

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[Guest guest]

Hi :

Thanks for the information you posted.

I too, am just over 3 months post RTKR surgery. I was told that the 1

year point was a significant one and that it was progressive

improvement up to 1 year and beyond.

I look forward to my 2nd knee surgery in April.

Cheers, Ross

[Guest guest]

:

I appreciate your comments and I am hoping that what you have observed ends up being the situation for me. I saw my orthopaedic surgeon today and he said that my right knee was much more swollen than the left knee. It is the right one that I am worried about. I talked to him about what will happen with the passage of time, and he acknowledged that time will cure many problems that just have to have time to resolve.

Your observations are what I hope will happen and thanks for the comments. I have done everything they have asked of me and I will continue to work on it. After talking with the doc today, and he confirms what your have said, I am going to relax a little and let "father time" work a little magic.

thanks

[Total_Joint_ Replacement]> questions> > > > > I am suppose to have a knee replacement would like> topeople that have had thissherry>h___________ _________ _________ _________ _________ _________ __Never> miss a thing. Make your home page.> http://www.. com/r/hs > > > > > > sherry h____________ _________ _________ _________ _________ _________ _Never miss a thing. Make your home page. http://www.. com/r/hs

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Never miss a thing. Make your homepage.

[Guest guest]

Be sure to ask your doctor to check your kidney values. The swelling in my legs was caused by glomerulonephritis, a kidney problem which can be a part of the CLL picture. Also, don't rule out cardiac causes. Not everything that happens to us medically is part of our CLL.

Pat**************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Hi - we don't know much about your details so difficult to answer questions. We all have less than perfect immunoglobulin counts, which sometimes lead to persistent infections. Sometimes IG is given.

The web site is www.cllinfogroup.org

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi, Beth. I can see why you would be cautious since your son was injured by

vaccines. The flip side is that no matter what the child's age, vaccines still

won't work to protect them. You are doing the right thing. Think about it: if

vaccines worked, you wouldn't need to get boosters.

All vaccines come with the risk of death. Even if they worked, is it worth the

risk of death?

Winnie

questions

vaccinations

> Good Morning... I'm still trying to finalize my decision to take

> the religious exemption for my 2 sons.... My older boy, ,

> is up for the dT booster shot.... his younger brother, Christos,

> was vaccine injured in Greece with the DTP shots I believe....

> I've been taking the religious exemption for both boys right

> along so I wouldn't have to vaccinate Christos. I just hoping

> I'm doing the right thing for . I believe that if one of

> them steps on a rusty nail they can get the tetenus shot right

> away, does anyone know if Diphteria can be treated if contacted.

>

>

> Does anyone else struggle with these decisions concerning the

> older children?

>

> Thank you.... Beth Brokalakis

>

>

>

[Guest guest]

Hi Beth

Winnie is right on target.

After 30 years of researching the history of vaccines there is not a Doctor or

Scientist in the world who can prove any vaccines will protect anyone from a

disease. There is tons of cases where children suffered disease, disability and

death after vaccination. If you haven't seen the DVDs by people like Dr,

Tenpenny, Tocco, Or Null's vaccine nation I strongly suggest you do

so. Just take a read of all these people on this list telling their

heartbreaking stories. If you want I can give you the name and phone number of a

friend of mine to talk to.. He is one of your countrymen. Had a beautiful boy of

5 who was perfectly healthy untill age 2. Then Autism. I can give you plenty

of names right here in my area whose children have became Autistic after

injecting poison into their little bodies.

As far as the goverment or the doctors admitting the shots cause all these

problems after all these years, would you if you were in their shoes. Keep

reading and listen to that voice inside of you. The smallpox shot made my

daughter sick and the doctors treatment killed her.

Jim O'

Founder of S.I.N.B.A.D

Shots in babies are deadly

questions

vaccinations

> Good Morning... I'm still trying to finalize my decision to take

> the religious exemption for my 2 sons.... My older boy, ,

> is up for the dT booster shot.... his younger brother, Christos,

> was vaccine injured in Greece with the DTP shots I believe....

> I've been taking the religious exemption for both boys right

> along so I wouldn't have to vaccinate Christos. I just hoping

> I'm doing the right thing for . I believe that if one of

> them steps on a rusty nail they can get the tetenus shot right

> away, does anyone know if Diphteria can be treated if contacted.

>

>

> Does anyone else struggle with these decisions concerning the

> older children?

>

> Thank you.... Beth Brokalakis

>

>

>

[Guest guest]

Hi Beth

If your boys step on a rusty nail or cut themselves in any way, examine the

article that did the cutting.

If it wasn't dipped in cow sh-t don't worry. You see back in the good old days

when boys to run all over their farms or were taught to build things they used

to step on nails or cut themselves all the time. Then our ignorant of health

allopaths thought that rubbing cow sh-t on the cut. Well I have been told that

cow sh-t is where the tetenus spore lives. Other then that I can tell you that

as a boy and man I have cut myself a few times and was never given a tetenus

shot, and I am still in great health.

Jim O'

Founder of S.I.N.B.A.D.

Shots in body's are dangerous

questions

Good Morning... I'm still trying to finalize my decision to take the religious

exemption for my 2 sons.... My older boy, , is up for the dT booster

shot.... his younger brother, Christos, was vaccine injured in Greece with the

DTP shots I believe.... I've been taking the religious exemption for both boys

right along so I wouldn't have to vaccinate Christos. I just hoping I'm doing

the right thing for . I believe that if one of them steps on a rusty nail

they can get the tetenus shot right away, does anyone know if Diphteria can be

treated if contacted.

Does anyone else struggle with these decisions concerning the older children?

Thank you.... Beth Brokalakis

[Guest guest]

Getting the tetnus shot after won't do any good either! Your best bet

is to clean the wound very well after letting it bleed a lot and then

let it air dry. Tetnus CANNOT grow in oxygen. If you use a syringe

like what they give you from getting wisdom teeth pulled to keep your

sockets clean, the water shot in thee will clean it out. A bit of

peroxide or plain ol' soap and water to clean the area.

I sliced my knuckle up pretty bad on the tailpipe of my husbands

truck and my last tetnus was nearly 12 years ago when I was 13. I

didn't go to the doctor or ER, just let it bleed, rinsed it out and

let it air dry after it quit bleeding.

Older children should already have thier immune systems built up. It

is up to us as parents to maintain a healthy child, not inject

poisons into them hoping that it will prevent or cure when clearly it

doesn't.

-Kristi

> I believe that if one of them steps on a rusty nail they can get

the tetenus shot right away, does anyone know if Diphteria can be

treated if contacted.

>

> Does anyone else struggle with these decisions concerning the

older children?

>

> Thank you.... Beth Brokalakis

>

>

>

[Guest guest]

Hallo, I am responding to Rutherford who has had a persistent upper

respiratory infection. Last summer I had enlarged lung nodes shown on a Pet/Ct

scan. After a couple of broncoscopies and a videoassisted lung biopsy it was

determined that I had at least three different lung infections. I had not felt

any symptoms of this except an occasional cough when lying down. I had

legionella, aspergillus, and a noninfectious type of tuberculosis which are now

treated with three different medications which I will have to stay on for a

whole year. I was diagnosed with CLL in 2005 and am still in the W & W stage. I

have no symptoms to speak of; but because of the CLL and two previous breast

cancer incidents my Infectious disease doctor wants to take all kinds of

precausions. I do remember being told when I was diagnosed that the CLL probably

would never bother me much, and that I would more likely die from something like

pneumonia. So, although the medication I am taking give me stomach problems and

other discomfort, I am hanging in there. My understanding is that infections of

all kinds can be an ongoing problem and need to be taken seriously.

Bente in Tempe, Arizona

________________________________

From: on behalf of Rutherford

Sent: Tue 6/24/2008 6:46 PM

Subject: questions

Hi,

I don't have anything I would call a systemic problem-

like I still feel healthy. However, I have had a

persistant upper respiratory infection that has gone

hand in hand with enlarged glands/nodes. I had run

straight to Dr a couple times for antibiotics but kept

thinking maybe this would shake itself out. Anyone

deal with this? I see my Dr in another week, but

would love some advance notice if this has happened to

anyone else.

Recently I am getting swelling in my legs, but this

goes down with elevating them over night. Am I at the

mercy of starting a treatment to reduce nodes to stop

the swelling?

Finally, someone please forward this groups website

address? I have reviewed about 200 old messages and

just can;t seem to find it.

Yes I am W & W, but thinking that may be over soon.

Thanks.

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

[Guest guest]

Hi f,

someone said to put the mite in rubbing alcohol--it preserves it while also

killing it.

LL

> From: fannouj <fannouj@...>

> Subject: questions

> bird mites

> Date: Wednesday, July 30, 2008, 6:30 PM

> Hi all!

> What do you do with your electros??

> I am looking for tuner cleaner her and does not find. It

> seems there

> is different products for computer than tv than others.

> i am not sure what to do with that. Can you tell me what

> are your

> protocol?

> Also, I,d like to know what you did when you did find a

> mite, did u

> put it in water? Cause aas i said, we did found one and it

> is dried

> now...It was so clear, the legs everything. Now it looks

> like nothing...

> So, what is the thing to do next time??

>

> Thanks all.

>

> F.

[Guest guest]

Frances,

My husband had his 1st ctoma removed in Feb. He was off work for a full week (of course he has a job that requires him to wear a headset, so that cause him some extra pain & discomfort that your 12 yr old may not have to deal with.) I guess then I should say he was on pain meds for a full week, if that gives you any idea as to what to expect. On a side note, the first 2 or 3 days after surgery he needed pretty constant care. So you'll also want to plan for time off from a job for yourself, if that's applicable.

I'm not sure why they do the biopsy, although my husband had one too. My best guess is they do it to make sure it is a ctoma and not anything else.

As for how to tell her, I wish there was an easy way. She could be in for partial or permanent hearing loss, ctoma reoccurances & infections. I did not know much about ctomas until AFTER the 1st surgury in Feb, so I was pretty clueless as to what we were up against. I have since found that sometimes too much information can be overwhelming and causes us more anxiety. I don't have children yet myself, but my suggestion would be to explain it as "simply" as possible. So much about the ctoma is not really known until they physically open up the ear, so a lot of the answers are "I don't know".

Good Luck and our thoughts & prayers are with you and your daughter.

Omaha, NE

From: dalrymplef <francesd@...>Subject: Questionscholesteatoma Date: Thursday, August 7, 2008, 8:52 AM

My daughter, age 12, had surgery yesterday to implant tubes in herears. We were stunned when her ENT told us that he could only put atube in her left ear, her other ear had a cholesteatoma. We didn'tknow what questions to ask at the time. She has an appointment withhim and another doctor in his practice in about 5 weeks. So, ofcourse, I've been browsing the internet. My questions: 1. How long will she expect to be out of school? I realize it dependson many of factors. I'd like to have some sort of idea.2. Why a biopsy? He said that he sent a sample off for a biopsy. 3. Any advice on how to tell her? We haven't told her yet and I thinkthat I will literally fall apart. Thanks much,Frances

[Guest guest]

Hi Frances,

Glad you found this group, I think you'll find some help from other

parents who were in your shoes.

I just had my c-toma removed three weeks ago yesterday and I was

outside gardening for several hours this morning. I feel so much

better/stronger than before the operation and am so happy they finally

diagnosed what was really wrong with me.

I think the biopsy is just protocol which all doctors have to do if

the remove any tissue and will confirm that it is

cholesteatoma.

The most important thing for you to do is to find a doctor that has a

lot of experience in doing this operation which is rather rare. Look

for a doctor whose speciality is Otology and Neurotology which takes

them years of advanced study beyond becoming an ENT.

Don't be shy asking the hard questions...

How many have you done?

What is your recurrence rate?

Do you use a facial nerve monitor? (Don't choose them if they do not

as it is the only foolproof method of being sure they do not damage it.)

And if you end up at a teaching hospital, be sure the surgery will be

done by the surgeon and not a resident/student. Specify this on the

permission form.

Also,ask him not to talk about all the " possible " side effects in

front of your daughter...no need for her to worry. The doctors have

to tell you, but by choosing an experienced doctor, you are already

avoiding the problems.

Oh, and get yourself a notebook so you have one place for all the info

you'll be gathering.

I found Peggy Huddleston's book Prepare for Surgery, Heal Faster and

her CD to be extremely helpful to me. At 12 I think you daughter

(along with you) can use her techniques. New York University hospital

offers a course using her techniques for patients having surgery there

Mass. General Hospital along with many others does too. It basically

teaches mind/body visualization techniques that help you replace your

fears with positive thoughts. It worked for me. Take a look at her

site www.HealFaster.com for more info.

Try to think of the diagnosis as a step towards your child's cure.

Remember, she will take her cues from you so you'll need that inner

strength to help her think positively and not be fearful.

Also, you have the legal right to be with your child until the

anesthesia is administered if you so choose. If she is expected to

stay overnight, make arrangements to be allowed to stay with her.

Well, I hope I haven't thrown too much out at once. I'm sure some of

the parents will have a lot more first hand tips for you.

Healing thoughts to your daughter!

>

> My daughter, age 12, had surgery yesterday to implant tubes in her

> ears. We were stunned when her ENT told us that he could only put a

> tube in her left ear, her other ear had a cholesteatoma. We didn't

> know what questions to ask at the time. She has an appointment with

> him and another doctor in his practice in about 5 weeks. So, of

> course, I've been browsing the internet. My questions:

> 1. How long will she expect to be out of school? I realize it depends

> on many of factors. I'd like to have some sort of idea.

> 2. Why a biopsy? He said that he sent a sample off for a biopsy.

> 3. Any advice on how to tell her? We haven't told her yet and I think

> that I will literally fall apart.

>

> Thanks much,

> Frances

>

[Guest guest]

Frances -

A couple of things, my daugther is 4 1/2 and we received her diagnosis on April 29th. It was A TON to take in. My husband couldn't go to the appointment with me so I was there on my own to get the results. Which of course going to a CT scan and reviewing them you hope it comes back okay. It didn't, in her left ear she has vergy aggressive C-toma.

Since she was 2 1/2 she's had 4 sets of tubes in her left ear, 3 in her right, tonsills and adenoids removed. Because of this we just told her she was having another surgery.

My husband and I were talking one night and apparently our 7 year old overheard us, because she started talking to a couple of my friends about it. I looked at her and said how do you know, she said she heard us talking. So since then everything has been out in the open. We sat down with our 4 year old and 7 year old and explaned that she has a benign tumor growing behind her ear and that it can cause serious problems if we don't get it taken care of. Our 7 year old had heard us talk about brain damage so I explained that more. I didn't explain it too much to our 4 year old but made sure they both knew it's very serious.

I let them know that our new doctor that found this is doing everything in his power to help us and that we will work on getting through this together.

They both know how important the surgeries are and that we have to be very careful with her ear(s) - she has a perf. ear drum in the right ear and it is working on healing.

I would just sit down with your daughter and try to speak with her about what is going on. Let her know that this is something rare, however the doctors are doing everything they can. Unfortunatly this is something our little ones will have to deal with the rest of their lives.

My suggestion would be to get the crying out before you talk to them. I have had many many many nights where I break down and right now writing this to you breaks my heart. It breaks my heart that our children and other people have to go through this. However I do everything in my power to stay strong in front of the kids. It's so important for them to know how special they are and that this is something the family will work through together.

Also, I'm not sure why they sent some of it out for a biopsy. My doctor and the research I've done mentions that it is skin that comes backwards in the ear due to kind of a vacuum effect. That it's not cancer and that there is no reason to do a biopsy.

One last thing, our doctor said our Hailey could go back to regular activity after 2-3 days. At day 4 she was still kind of weak but we sent her to day care and she did pretty good. Once in a while she still says her ear hurts. I know it does if she bumps it, but not sure if other times she's just saying it to get a reaction. Her 1st surgery was June 23rd and we have our 2nd surgery coming up ---we hope by the end of the year.

You're in our prayers.

take care

Questions

My daughter, age 12, had surgery yesterday to implant tubes in herears. We were stunned when her ENT told us that he could only put atube in her left ear, her other ear had a cholesteatoma. We didn'tknow what questions to ask at the time. She has an appointment withhim and another doctor in his practice in about 5 weeks. So, ofcourse, I've been browsing the internet. My questions: 1. How long will she expect to be out of school? I realize it dependson many of factors. I'd like to have some sort of idea.2. Why a biopsy? He said that he sent a sample off for a biopsy. 3. Any advice on how to tell her? We haven't told her yet and I thinkthat I will literally fall apart. Thanks much,Frances

[Guest guest]

To all,

Thank you so much for sharing your experiences. This message board has

been most helpful. I apologize for not replying to all e-emails. We

are still a bit overwhelmed and, to top it off, school starts on

Tuesday Aug 12.

Thanks again!

Frances

[Guest guest]

Hi Frances & welcome...

I'm sure you are in a bit of shock as most of us are when they learn

we or our child has Cholesteatoma.

Do lots of research, as you already are if you found this group. There

is a lot to read about it online.

My son (10) had his first C-toma surgery, Tympano-Mastoidectomy, about

6 wks ago.

I agree that the biopsy is to confirm what your Dr saw during your

daughter's tube surgery. If it's infected, it also helps to know what

antibiotics are best to use in the interim until surgery. Most likely

drops will be used as well as oral antibiotics.

My son had his surgery this summer, but he was doing well in about a

week. Many kids do not have much pain. My son had some numbness which

was a Godsend. Time out of school can vary depending on how she feels

but I would guess a wk or 10 days out of school for a mastoidectomy.

Full recovery can take up to 4 wks for good healing to take place but

kids bounce back so quickly. On day 4 it was hard to keep ds inside.

He wanted to play Basketball lol!

As far as telling her, get your tears out in private before you tell

her. If you're scared, she will be too. I know how hard it is, you're

scared for your child & for the surgery she'll have. I was very upset

as well but I tried to stay very positive for his sake. It's

especially hard when they ask you if they will be die, or if they will

be deaf, it's a tear bringer...so be prepared for that. But learning

about Ctoma will help you to know that death is EXTREMELY rare (only

when it has gone to the brain after many many years lack of

discovery). So you can be positive & tell her she won't die.

Deafness is a possibility but is usually temporary & repairable

through reconstruction surgery, which my ds is having. I told my son

he would not be deaf because at that time we didn't know he would lose

his hearing bones. After we came home from surgery he asks why he

couldn't hear & I told him the Dr is going to make him bionic bones

once he is very much healed. He likes that he will have a " robot

ear " lol...for your daughter, I'm sure you'll find a way to tell her

in a way that will make her feel comfortable & safe. Some people do

lose their hearing but I'm glad I didn't tell ds that he might. It is

better to be hopeful & positive so that they will be.

Shell

>

> My daughter, age 12, had surgery yesterday to implant tubes in her

> ears. We were stunned when her ENT told us that he could only put a

> tube in her left ear, her other ear had a cholesteatoma. We didn't

> know what questions to ask at the time. She has an appointment with

> him and another doctor in his practice in about 5 weeks. So, of

> course, I've been browsing the internet. My questions:

> 1. How long will she expect to be out of school? I realize it depends

> on many of factors. I'd like to have some sort of idea.

> 2. Why a biopsy? He said that he sent a sample off for a biopsy.

> 3. Any advice on how to tell her? We haven't told her yet and I think

> that I will literally fall apart.

>

> Thanks much,

> Frances

>

[Guest guest]

Dear Ruth,

Yes -- it's sometimes pressure and sometimes pain. Not having had a

baby, I can't make that comparison. But I can say they feel like they

don't belong there! When mine were at their worst I had trouble

taking deep breaths, they interfered with peeing and I looked like a

frog with mumps. My neck

nodes came first, then others.

As for fatigue, it's a very odd thing.—I felt a particular kind of

tired after I was dx'd and for 2 yrs until my first tx. It was a kind

where you suddenly must lie down, period, and right now!! After tx,

that kind of fatigue never returned. But then I started to sweat from

my head, profusely -- if I simply sat at the computer like this and

wrote. Somewhere around my 3rd treatment time, the sweating went away.

I was certainly tired during tx with thalidomide but it was a different

kind of fatigue. Different things happen at different times but the

fact that something happens once doesn't mean it will always happen or

even happen ever again. Curious disease, this.

Good luck at MDA.

-Ellen Diamond

On Aug 18, 2008, at 3:36 PM, Ruth Snider wrote:

> I have not posted very often. I find most of my questions answered

> before I even think of them, but now I have a couple. What do nodes in

> the lower abdominal area feel like. Is it pressure and sometime pain? 

> It reminds me of when I was carrying my ten pound baby many years

> ago.  I just found the first node I can feel in my neck.

>  

>  Does fatigue come and go? I have been in my recliner for four days,

> but this afternoon find my self feeling better. I know my WBC has

> elevated quite a bit from a blood test I had run a few weeks ago (May

> 43,000 to 81,000 this past July).  My red counts were a little low at

> that time.  Thank goodness I go back to MDA this Thursday. Ruth

>

>

>

[Guest guest]

Ellen, I sweat just on my scalp and no where else. I have been dreading

night sweats, so maybe this is our version of them. I have a node at the

base of my skull that has been there for some time. I recently had back

surgery. I took several days of steroids. That node went down, but it is

back. Ruth

[Guest guest]

Steroids are temporary with many things -- they're usually used in

conjuction with something more permanent when it comes to " disease

load. " They're great for getting one readier for tx -- I took steroids

when I was anemic and I needed treatment for my nodes. What great

days! I ran up hills with no shortness of breath and every pain in my

body disappeared.

Those were the temporary effects -- but it did get rid of the anemia!

Best-Ellen

On Aug 19, 2008, at 8:10 PM, Ruth Snider wrote:

> Ellen, I sweat just on my scalp and no where else. I have been

> dreading

> night sweats, so maybe this is our version of them. I have a node at

> the

> base of my skull that has been there for some time. I recently had back

> surgery. I took several days of steroids. That node went down, but it

> is

> back. Ruth

>

>

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

>

>

[Guest guest]

connie and Jim:

You are going to want two diagnoses anyway so go to both an ortho and

a sports ortho. After they take an xray (you can take the xray from

one to another for a second opinion) the doctor should be more able

to see why he is not progressing as he would like...although June is

not that long ago if the damage was severe, it takes months to heal.

But they should be able to tell you if his knee will function once

again with pt and exercise or if he needs a knee replacement.

There are some amazing doctors out there for knee replacements these

days, if that is what seems the best route.

Lynn

>

> My husband was in a motorcycle accident in June. Today, he is

> standing, but his right knee is a mess. He has been doing PT with

no

> progress...so knee replacement sounded like the way to go.

BUT...he's

> a very active 53 year old man, and I don't want him to regret

making

> the " wrong " decision just because he wants to get back on his feet.

> In about five years we plan on retiring and " go see the country " .

> BUT...is this going to stop him from enjoying the rest of his

life?

> Right now we have a choice whether to see an Ortho Specialist or a

> Sport Medicine Ortho Specialist. I know there are " new " things out

> there, but I'm very new to all of this, I'd love to have more time

to

> do research, but waiting is killing him. He's at work, he drives,

even

> though I'm sure people think he's crazy for doing it.

> He was in the US Army for 31 years, Special Forces, Green Beret,

and

> even though he's not going to run a marathon when he's better, he

is a

> very active man, likes to Bow hunt, climb trees, work on the house,

> stuff like that. What should we be asking and what's out there for

> him? This is where we are at right now.

>

> Connie and Jimmy in North Carolina

>