upcoming surgery

[Guest guest]

Hi blueroo,

Welcome to the group. As we always say, we are

glad/sad to have you.

My hubby has had a cwd in his left ear in July of

2000. He also had a meatoplasty. I suppose if I

really looked, I could tell the difference, but

honestly, I really don't notice. He has a maximal

conductive hearing loss in that ear but can hear with

a hearing aide. His hearing aide is visible, but you

can get aides that fit right into the ear. My brother

has these, but not from c-toma.

I am concerned that your surgery won't be for awhile

considering that your c-toma is fairly extensive. Not

to scare you, but c-tomas tend to be more extensive

than what the CT scan shows. At least for first time

surgeries. It's not always that way, sometimes it is

exactly what the CT scan shows.

Can you get a 2nd opinion? I am on the West Coast

(Oregon) so I can't help you in the dr. area. We do

have a member that lives in Ohio but that's all I

know.

Good luck and please keep us posted. We understand

and we care.

Michele

--- theblueroo <theblueroo@...> wrote:

> I would first like to say hello to everyone in the

> group and thank

> them for sharing their experiences. My post seems

> to have

> transformed itself into somewhat of a narrative, but

> I hope that it

> will benefit others.

>

> I am a 29 year old male from northern kentucky. I

> have been seeing

> ENT's since I was five years old. I have probably

> had 7 " tube

> operations. " I was diagnosed with cholesteatoma in

> fall 2000. I had

> to delay the surgery for various reasons and

> recently went back to

> the ENT. I had my CT scan on Easter Sunday and

> received my follow-up

> call on Thursday. I was told my cholesteatoma had

> engulfed my ear

> ossicles. From my hearing tests I am over 90%

> normal on the left and

> about 75% normal on the right. The growth is

> limited to my right

> ear. If anyone is from the NKY or the Cincinnati

> area I would really

> appreciate a response regarding their experiences.

>

> Like most people here I am extremely apprehensive

> about the

> consequences and risks of the surgery. I was told

> by my surgeon that

> I would probably be undergoing the canal wall down

> procedure. For me

> it is very disheartening to hear of the extensive

> follow-up care that

> this procedure necessitates. I do place a great

> deal of confidence

> in my primary care physician and his recommendations

> but I still hope

> to hear from someone in my area about their

> experiences. While I was

> at my ENT on the Friday before Easter I was told

> that my surgery

> would have to wait 4-6 weeks because of my

> physician's schedule.

> From what I've read in this group and on other

> numerous web sites

> most surgeons advocate immediate surgery, unlike

> mine which didn't

> see any problems about waiting for several months.

> This bothers me.

> I guess that I am lucky in that I don't have any

> severe pain, nor

> unsightly discharge, but I spend a lot of time

> wondering if my

> waiting made things much worse than they had to be.

> I've been in a

> lot of accidents (in middle school I broke my nose

> into four pieces)

> and have had other surgeries not involving an ENT.

> I've always done

> very well but none of my prior surgeries have been

> this serious.

>

> Can anyone recommend any web site links for post-op

> photos of canal

> wall down surgery? I am extremely self-conscious

> about my appearance

> and my interpretation of some of the prior posts

> about meatoplasty

> really bother me.

>

> I can empathize with what many of the parents in

> this group are

> experiencing. My own hearing disabilities as a

> child were the

> reason I was placed in the lowest academic reading

> groups and led to

> my wrongful classification as a child with sub-par

> intelligence. I

> also never got to go to summer camp because of the

> tubes and the

> risks of infection. Learning to ride a bike was a

> bitch. Problems

> with your ears can lead to numerous unforeseeable

> difficulties and

> they can be a source of great frustration for both

> the parent and the

> child. I wish the best for those in that situation.

>

> Well anyway that's all I am able to share at this

> time. I hope to

> hear from someone in my area and maybe from someone

> who can provide

> more insight into the ramifications of canal wall

> down surgery.

>

> Thanks for your time and best of luck for each of

> you

>

>

__________________________________________________

[Guest guest]

I appreciate your story and I'm sorry for all you have gone through.

I don't think it is that unusual to wait 6 weeks to have surgery.

I think some cholesteatomas are not as aggressive as others and I don't

think six weeks sounds like an exceptionally long period of time.

Since my son Zach had them in both ears they took a year to get to the

ct in the right ear. He was scheduled about six weeks after his initial

consultation and had the one in the left ear removed and the reconstruction

was done about 8 months later. They didn't want to start on the right

ear until the left ear was better so he had at least one functional ear

at all times. This helped him out in school but I was concerned about

the delay in the right ear--when they did go in it was very extensive

but the doctor said the damage had already been there from years

and years of growth.

In terms of the cwd vs cwu debate I think that with the cwd prognosis

it is very worthwhile to get a second opinion to be sure. Many doctors

vary on their opinion as to whether or not it is necessary, but if you

get 2 or 3 doctors agreeing you will feel better about your decision.

Thanks for sharing your story and good luck!

theblueroo wrote:

I would first like to say hello to everyone

in the group and thank

them for sharing their experiences. My post seems to have

transformed itself into somewhat of a narrative, but I hope that

it

will benefit others.

I am a 29 year old male from northern kentucky. I have been

seeing

ENT's since I was five years old. I have probably had 7 "tube

operations." I was diagnosed with cholesteatoma in fall 2000.

I had

to delay the surgery for various reasons and recently went back

to

the ENT. I had my CT scan on Easter Sunday and received my

follow-up

call on Thursday. I was told my cholesteatoma had engulfed

my ear

ossicles. From my hearing tests I am over 90% normal on the

left and

about 75% normal on the right. The growth is limited to my

right

ear. If anyone is from the NKY or the Cincinnati area I would

really

appreciate a response regarding their experiences.

Like most people here I am extremely apprehensive about the

consequences and risks of the surgery. I was told by my surgeon

that

I would probably be undergoing the canal wall down procedure.

For me

it is very disheartening to hear of the extensive follow-up care

that

this procedure necessitates. I do place a great deal of confidence

in my primary care physician and his recommendations but I still

hope

to hear from someone in my area about their experiences.

While I was

at my ENT on the Friday before Easter I was told that my surgery

would have to wait 4-6 weeks because of my physician's schedule.

>From what I've read in this group and on other numerous web sites

most surgeons advocate immediate surgery, unlike mine which didn't

see any problems about waiting for several months. This bothers

me.

I guess that I am lucky in that I don't have any severe pain, nor

unsightly discharge, but I spend a lot of time wondering if my

waiting made things much worse than they had to be. I've

been in a

lot of accidents (in middle school I broke my nose into four pieces)

and have had other surgeries not involving an ENT. I've always

done

very well but none of my prior surgeries have been this serious.

Can anyone recommend any web site links for post-op photos of canal

wall down surgery? I am extremely self-conscious about my

appearance

and my interpretation of some of the prior posts about meatoplasty

really bother me.

I can empathize with what many of the parents in this group are

experiencing. My own hearing disabilities as a child were

the

reason I was placed in the lowest academic reading groups and led

to

my wrongful classification as a child with sub-par intelligence.

I

also never got to go to summer camp because of the tubes and the

risks of infection. Learning to ride a bike was a bitch.

Problems

with your ears can lead to numerous unforeseeable difficulties

and

they can be a source of great frustration for both the parent and

the

child. I wish the best for those in that situation.

Well anyway that's all I am able to share at this time. I

hope to

hear from someone in my area and maybe from someone who can provide

more insight into the ramifications of canal wall down surgery.

Thanks for your time and best of luck for each of you

[Guest guest]

Hi there. I just had the same surgery you will

probably have. Although I am located in Texas, the

doctors I had to see insisted on immediate removal. So

I would get a second opinion. Tomorrow will be the two

week mark since my surgery and I feel great. I was

feeling back to myself one week after the surgery. I

had a canal wall down Mastoidectomy with

Tympanoplasty. They cut behind my ear and widened my

ear canal. It's gross, but I unfortunately had the

drainage before and that was really gross. They used

gel packing and that is still draining, but as far as

pain and pressure it is all gone. I was very scared of

the pain pre-op because I assumed anything on the head

would hurt. It did hurt, I'm not going to lie, but

every day the pain went away more and more. At first

the sight of the inside of my ear was disturbing, but

now it's looking like an ear again. Just remember

everything takes time. I go in for my follow-up on

Friday and I'm interested to see if the reconstruction

worked, I had less than 25% hearing in my ear so it'll

be wonderful to be able to hear anything. Well good

luck I hope this helped.

Mancie

--- theblueroo <theblueroo@...> wrote:

> I would first like to say hello to everyone in the

> group and thank

> them for sharing their experiences. My post seems

> to have

> transformed itself into somewhat of a narrative, but

> I hope that it

> will benefit others.

>

> I am a 29 year old male from northern kentucky. I

> have been seeing

> ENT's since I was five years old. I have probably

> had 7 " tube

> operations. " I was diagnosed with cholesteatoma in

> fall 2000. I had

> to delay the surgery for various reasons and

> recently went back to

> the ENT. I had my CT scan on Easter Sunday and

> received my follow-up

> call on Thursday. I was told my cholesteatoma had

> engulfed my ear

> ossicles. From my hearing tests I am over 90%

> normal on the left and

> about 75% normal on the right. The growth is

> limited to my right

> ear. If anyone is from the NKY or the Cincinnati

> area I would really

> appreciate a response regarding their experiences.

>

> Like most people here I am extremely apprehensive

> about the

> consequences and risks of the surgery. I was told

> by my surgeon that

> I would probably be undergoing the canal wall down

> procedure. For me

> it is very disheartening to hear of the extensive

> follow-up care that

> this procedure necessitates. I do place a great

> deal of confidence

> in my primary care physician and his recommendations

> but I still hope

> to hear from someone in my area about their

> experiences. While I was

> at my ENT on the Friday before Easter I was told

> that my surgery

> would have to wait 4-6 weeks because of my

> physician's schedule.

> From what I've read in this group and on other

> numerous web sites

> most surgeons advocate immediate surgery, unlike

> mine which didn't

> see any problems about waiting for several months.

> This bothers me.

> I guess that I am lucky in that I don't have any

> severe pain, nor

> unsightly discharge, but I spend a lot of time

> wondering if my

> waiting made things much worse than they had to be.

> I've been in a

> lot of accidents (in middle school I broke my nose

> into four pieces)

> and have had other surgeries not involving an ENT.

> I've always done

> very well but none of my prior surgeries have been

> this serious.

>

> Can anyone recommend any web site links for post-op

> photos of canal

> wall down surgery? I am extremely self-conscious

> about my appearance

> and my interpretation of some of the prior posts

> about meatoplasty

> really bother me.

>

> I can empathize with what many of the parents in

> this group are

> experiencing. My own hearing disabilities as a

> child were the

> reason I was placed in the lowest academic reading

> groups and led to

> my wrongful classification as a child with sub-par

> intelligence. I

> also never got to go to summer camp because of the

> tubes and the

> risks of infection. Learning to ride a bike was a

> bitch. Problems

> with your ears can lead to numerous unforeseeable

> difficulties and

> they can be a source of great frustration for both

> the parent and the

> child. I wish the best for those in that situation.

>

> Well anyway that's all I am able to share at this

> time. I hope to

> hear from someone in my area and maybe from someone

> who can provide

> more insight into the ramifications of canal wall

> down surgery.

>

> Thanks for your time and best of luck for each of

> you

>

>

>

[Guest guest]

Upcoming surgery

> Fortunately, my right ear was tested at the same time, and has very

> good response, especially at speech frequencies. And my right ear

> still is good up to about 12 or 13 KHz. So I don't need a hearing

> aid, thank God.

Hearing aids are a blessing to those of us who need them. A BLESSING. So,

I'm glad you don't need one, but don't be dissin' 'em.

--

Cheers,

--Jeff

[Guest guest]

In a message dated 08/28/2002 8:27:20 PM Eastern Daylight Time, gsp1@... writes:

I knew the cholesteatoma had returned when I started having skin

problems behind my left ear

Hello , and welcome to the group. I'm sure you'll find there are others here in very similar boats. I'm due to schedule my 4th cholesteatoma surgery this fall, just as soon as I get around to traveling across the bay (Chesapeake) to get a 2nd opinion.

What do you mean by skin problems behind your ear? I've never heard of this.

Best of luck with your upcoming surgery. Keep us posted.

[Guest guest]

I was wondering same thing about skin problems behind the ear.

[Guest guest]

I have skin problems behind my ear too but I'm not

sure if it's associated with c-toma. It's kind of a

flaky, dry skin condition, primarily behind the ear

with the c-toma troubles.

__________________________________________________

[Guest guest]

Hi everyone,

I have been thinking along similar lines, about the relationship between

skin trouble and c-toma. My question is how many people with c-toma also

have eczema?

Lynn

Re: Upcoming surgery

> I have skin problems behind my ear too but I'm not

> sure if it's associated with c-toma. It's kind of a

> flaky, dry skin condition, primarily behind the ear

> with the c-toma troubles.

>

> __________________________________________________

>

[Guest guest]

Lynn ~

I also have eczema, severe as a child. I've even gotten to the point where I have had UVA light treatments (what they give people for psoriasis) and Cortisone injections just to try to clear me up! As a child I used a product called Tar -- it was yellow, stained my skin, and had an awful odor! I still have bouts of eczema, mostly on my hands, arms and legs. I even get it behind my ears and in my ear canal (on my "good" ear). This concerns me a little bit, but I have never thought of it being linked to the c-toma. After reading that the three of you have it really makes me think there is a link.

On a different note, I just went to my local ENT for a cleaning of my ear. This was the most painful it had ever been. Stuff is really stuck in there. He wants me to use vinegar and water in there for three weeks and then come back for another cleaning. I told him I joined this C-toma group and was concerned about recurrence and also asked him why no one has ever told me about reconstruction? He told me that I don't have an ear canal anymore (about 11 years after my c-toma surgery I had a canaloplasty) and that I probably couldn't have it done. Also, I mentioned to him that there are a number of people who are acquiring c-toma at an older age and that I thought that was odd. He said actually my situation was rare -- to have c-toma as a child. Hey, this is a small town and I know I'm going to get differing views from all other ENT's, but it sure was nice to hear his point of view.

Back to the eczema thing -- very interesting that there might be a correlation between the two -- I hope more people out there respond to this question.

Isley

[Guest guest]

hi there, i was diagnosed with psoriasis about 6 months after first surgery.

of course i also had the chicken pox during that time, they think that might

have been the stressor to bring it out, but i have always wondered of any

connection. the dermatolgist i went to said no, just coincidence. who knows,

scot

[Guest guest]

Lynn,

very interesting theory. I had loads of eczema as a kid, though none

now. But I have pretty bad skin - can't shave on consecutive days,

flakey skin, etc. Could be something to it ...

Dave

> Hi everyone,

> I have been thinking along similar lines, about the relationship

between

> skin trouble and c-toma. My question is how many people with c-

toma also

> have eczema?

> Lynn

>

>

> Re: Upcoming surgery

>

>

> > I have skin problems behind my ear too but I'm not

> > sure if it's associated with c-toma. It's kind of a

> > flaky, dry skin condition, primarily behind the ear

> > with the c-toma troubles.

> >

> > __________________________________________________

> >

[Guest guest]

Hi and Dave

Thanks for the replies. When I read the post about the skin problems behind

the ear, it just got me thinking. I have eczema as well, right now mostly

on my hands, but sometimes, if I got soapy water in my ear, I would develop

an eczema like rash in my ear canal... it would itch like crazy. So I was

usually very careful when washing my hair.

Anyway, maybe skin flakes from eczema, got in my ear... and it grew from

there.... I liken the c-toma somewhat to a pearl, although they aren't quite

so attractive... but from an foreign substance irritating, grows this

" pearl " ... Anyway, Just a thought

Lynn

Re: Upcoming surgery

> >

> >

> > > I have skin problems behind my ear too but I'm not

> > > sure if it's associated with c-toma. It's kind of a

> > > flaky, dry skin condition, primarily behind the ear

> > > with the c-toma troubles.

> > >

> > > __________________________________________________

> > >

[Guest guest]

Lynn, I am so glad you asked. My son Zach, 4, with congenital c-toma

has had eczema since birth. I often wonder about this.

> > Hi everyone,

> > I have been thinking along similar lines, about the relationship

> between

> > skin trouble and c-toma. My question is how many people with c-

> toma also

> > have eczema?

> > Lynn

> >

> >

> > Re: Upcoming surgery

> >

> >

> > > I have skin problems behind my ear too but I'm not

> > > sure if it's associated with c-toma. It's kind of a

> > > flaky, dry skin condition, primarily behind the ear

> > > with the c-toma troubles.

> > >

> > > __________________________________________________

> > >

[Guest guest]

Donna

That is very interesting. My c-toma was thought to be congenital. (Even

though it was only diagnosed in my 40's) We'll never know for sure. I also

have had eczema since birth...

Lynn

Re: Upcoming surgery

> > >

> > >

> > > > I have skin problems behind my ear too but I'm not

> > > > sure if it's associated with c-toma. It's kind of a

> > > > flaky, dry skin condition, primarily behind the ear

> > > > with the c-toma troubles.

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

Hi Marie,

I ended up writing a very long email-I'm sorry about that. I think most

of us feel we can write a book about our experience with this!

I would be more than happy to tell you what I have experienced

with Zach.

I know the kids seem to recover much faster than the adults.

Zach always seems to have a very hard time recovering from the

anesthesia more than anything else--but that has varied with the

anesthesiologist. This last one looked at his charts, saw that he had a

hard time and immediately knew what to do. It was the first time in 4

surgeries that he didn't get sick after surgery and seemed to feel OK as

soon as he woke up.

The day of the surgery is hard--he gets to the hospital at

about 6am and leaves usually by 2pm after a 3-5 hour surgery. I can't

believe it is outpatient surgery but we are both very happy to go home!

He hates the bandage around his ear and head the most. We are told to

remove that the day after surgery and once that is removed Zach seems so

much better. There will still be bandages behind his ear along with some

blood and drainage from his ear.

I usually have his favorite movie ready for him to watch

when he gets home and I let him eat when he is ready. I have a few " get

well " cards and gifts waiting for him--that seems to perk him up more

than anything--they are going through so much and I think it helps them

to know that people understand that this is hard. I allow any friends

and family to visit even though he is not himself--he always remembers

that they came. He always has his surgeries on Thursday and he is back

to school by Monday or Tuesday. I think that is a bit fast but he wants

to go back and see his friends. He is definitely not completely himself

for at least a week or so--sometimes the teachers don't understand so

educating them I think is important. It's also important to remember

the gel packing in the ear. Zach tells him it makes him feel disoriented

and not himself. He can't wait to have that removed and once it is I

notice a big improvement in his mood.

School has been very hard for him after the surgeries because this is

when he can't participate in any sports and stays in a lot during

recess--his teacher last year was scared to death he was going to be hit

by a ball! I have asked the teachers to consider setting him up with a

buddy for the recesses so he doesn't feel so isolated. This is when he

is the saddest. I am hoping for a lot of rain this January. But

teachers can really help at this time with a little sensitivity to the

situation. I want the teacher to explain to the other kids what is

going on but that is a personal decision.

Zach doesn't have a hearing aide now although looking back I think he

would have benefitted. All four surgeries take two years to

complete--that is a lot of learning with poor hearing. This year his

teacher wanted him to see a speech therapist. The therapist thinks hs

speech is almost perfect and won't be a problem once his hearing

improves. He gets by incredibly well considering but there have been

definite difficulties in school because of it.

We schedule the post op appointment for the following week and he takes

the packing out then. We both actually look forward to this appointment

the most! I know this varies with doctors so they should let you know

when this will happen.

It sounds like you have a more difficult surgery because they are

working on both ears at the same time but I believe the tube in the

right ear will be very minor and I don't think he will have any problems

with that following the surgery--perhaps some drainage if there was

fluid in the ear. A lazy Boy chair will probably be

perfect--I wish I had one for Zach! Just be sure to have his favorite

food on hand as well as drinks for an upset tummy and get the

perscription filled for Tylenol with codeine or whatever you need to get

before you are home.

At times Zach doesn't seem to notice his ears but many times he

absolutely hates it and has a very hard time understanding why he has to

deal with this. I try to let him know that so many of us have physical

problems we have to deal with and we can't always explain why but

luckily we live in a time and place where doctors now know so much and

they will do their very best to make his ears better. I'm not to sure

if that helps him right now but as time goes on he seems to take it in

stride. It's been 10 months since the last surgery so as time passes

the frustration and bad memories do also.

Zach would love to email or send your son a get well card. If you send

your address directly to my email we will try to get a card out so it

gets to him on time. Otherwise we will email him a note.

I know there are other parents that may want to add to this with their

experience with their child.

I feel so much for your son--I

wish you and him the best of luck and please keep in touch.

karen (Zach's mom).

mt_flynn wrote:

> , I noticed your post on Zach and have a ton of questions now

> that 's surgery is about ten days away...

>

> My son is 8 and also has bilateral cholesteatomas. He is scheduled

> for his first surgery on 12/4. The general plan is to remove the

> growth in the left ear (worst), put a tube in the right ear and

> review the right to make a plan for more surgery in the near future.

>

> 1. What do you think I can expect in the way of recovery?

> 2. How do you make Zach most comfortable when he comes home after

> surgery?

> 3. When do you think he can go back to school? Restrictions?

> Does he have hearing aids now? Aren't they very uncomfortable after

> 4. surgery?

> 5. When do you think we can expect to visit the doctor again after

> surgery?

> 6. Is there anything I should purchase ahead of time to better

> prepare myself for helping him heal?

> 7. Since they will be working on both ears (one way more than the

> other), is it easier to set him up in a Lazy-Boy chair?

>

> is fairly recently adopted from Romania and is already

> internalizing the problem. Aside from the medical issues, there are

> some serious psychological issues that may get triggered so I am

> getting highly anxious.

>

> Thanks for any help any of you can offer with these questions. Marie

>

>

>

[Guest guest]

,

I had THP on November 21st. ly, I wish I had tied into this website and asked the same questions you did. In retrospect, I was totally unprepared. I'm 54 and very active as a full-time coach. All my friends told me this surgery was no big deal. What I've learned is that the only surgery that is no big deal is somebody else's surgery.

Let me put you at ease: you will get through it, but it will take work and concentration on your part. I found the initial two weeks post-op to be somewhat trying. The single biggest problem I experienced was my inability to get comfortable to sleep. Consequently, for the first month or so, I was lucky to get four hours of sleep each night. In recent weeks, it's gotten a lot better. I'm at the point now where I can sleep from 9 or 10 PM up until 6 AM.

I received 44 staples on my incision, and they were removed 3 -4 weeks after the surgery. After they were removed, I had some discomfort. My doctor recommended over the counter cortizone cream, and that has helped a lot.

Like everyone says, it is mandatory that you religiously do your rehab exercises. ly, they don't take long. I do them twice a day with no problems and can really tell the difference. For the first week after surgery, I did spend most of my time in bed with occasional soirees on my walker. Watch out for swelling in you ankle and knee. I ended up wearing one of those leg-length special socks that squeezes the leg and it helped. I was told to keep my leg above my heart but could never figure out how to do it. For the first several weeks beginning right after surgery, I experienced a 'cramping' sensation in my hip. I mentioned it to my doc and nurses, but they didn't seem concerned. It was very uncomfortable, and eventually eased up. Today, six weeks later, I don't experience it much.

After the first post-op week, I began spending more and more time out of bed using my walker. Four weeks after surgery, I began transitioning to a cane. Today (six weeks) I spend the majority of my time with the cane. You may find, like me, that you'll build up heavy callouses on your hands from the walker. I've been in my vehicle three times since surgery. Although I haven't driven, I feel like I could have the first time I got in the vehicle which was about 3 -4 weeks after surgery.

Six weeks after surgery, I know I cannot walk without a cane, walker, or crutches. Still, I sense that I will be independent of them in two weeks or so. Actually, I've committed myself to that schedule, so I continue to do my exercises with commitment.

I've tried to be as frank and open about my experience as possible, . I felt I went into the situation blind and have tried to give you an honest look at what happened to me. Again, it is a major surgery. As such, you can expect some discomfort. Still, if you follow your doctor's instructions, you will recover in a reasonable amount of time. I strongly recommend a raised toilet seat. You'll have to be careful sitting down on other chairs in the house, but I haven't had a problem with that.

Good luck with your surgery. I'm sure it will be worth it.

Gene

[Guest guest]

I strongly recommend "A Patient's guid to knee and hip replacement" Everything you need to Know" by Irwin Silber, Eugene Wolf. Of the 13 books I read on arthritis, joint replacement, this book took the prize. It answers everything you want to know, written by a writer who had 2 TKR and one THR, supplemented with excerps by his doctor. Until I read this book, I did not want TKR. I was too scared and didn't believe it would help me. You can buy this book at Amazon for $13 new or used from .74.

Email me if you wish,

[Guest guest]

Hi

I have had both my hips replaced and rented a hospital bed each time. It just makes it so much easier to sleep on your back.....you can adjust both the head and feet on the bed. Only had the bed for a month each time. As far as being scared.....everyone is scared before the surgery but it is so worth it.

Sally

[Guest guest]

: I can relate to the fear. I hobbled for over a year before taking the plunge with RTHR. Thank God I did! I'm driving short distances (though my doc said wait 8 weeks. I was walking right away in hospital with walker (and pain meds). I use a regular chair with a gel cushion for height. (Not advised to use recliner secondary to trying like hell to get up from it.) Slept in my own bed on second story (used 1 crutch and railing to get up steps). I live alone with annoying cat so I too need to "recover quick". Being nervous is normal...I had the "runs" for 4 days prior to surgery from nerves alone (and I'm not the nervous type). Get the surgery...best decision I ever made. Good luck. Kat

Upcoming surgery

I am scheduled to have THP the later part of January and have some questions that I haven't been able to find answers to. Maybe someone with the experience can help.1. How long before you can drive? Can you drive with a clutch?2. Most of the literature talks about a six week period before you can do much. Is this so? How long did it take you to start walking?3. What about a chair. Is a recliner the best or an anti-gravity chair or? Is it necessary to have a lift chair?4. Did you rent a hospital bed?After reading all of the literature I'm really apprehensive about having the surgery, but I have put it off for several years now and now the pain is so severe that I have to, but.... I guess I'm scared.There is more to it, my husband is legally blind and cannot drive or do alot. I normally take care of everything, that's why my recovery time is very important. Any advice will be greatly appreciated.

[Guest guest]

You will be so glad when it is over. Since you have some time, try

to do PT exercises now. It will make you stronger for recovery. I

was allowed to drive at 6 weeks for the first THR and 3 weeks for the

second THR. Get your clutch muscles strong now. I used a recliner,

but had a heck of a time getting out of it. Practice getting out

with your good leg now. It might work. It not a higher chair will

do. It is the 90 degree rule you have to watch out for.

It is six weeks until you are back to " normal " . But that does not

mean helpless. Also depends on weight bearing and the type of

prothesis. I was walking the day after surgery. Doing stairs by day

3. I did not get hospital bed. My bed is high. Prepare now with

easy access to things. Make sure you have lots of liquids by your

side. A raised toilet seat. If you are non weight bearing things

may be different. My husband left me alone all day about a week or

so after surgery.

If you prepare and have a good outlook, things should go smoothly.

Now if you have other health concerns or special circumstances things

will be adjusted.

Good luck

Sue

> I am scheduled to have THP the later part of January and have some

> questions that I haven't been able to find answers to. Maybe

> someone with the experience can help.

> 1. How long before you can drive? Can you drive with a clutch?

> 2. Most of the literature talks about a six week period before you

> can do much. Is this so? How long did it take you to start

walking?

> 3. What about a chair. Is a recliner the best or an anti-gravity

> chair or? Is it necessary to have a lift chair?

> 4. Did you rent a hospital bed?

>

> After reading all of the literature I'm really apprehensive about

> having the surgery, but I have put it off for several years now and

> now the pain is so severe that I have to, but.... I guess I'm

> scared.

> There is more to it, my husband is legally blind and cannot drive

or

> do alot. I normally take care of everything, that's why my

recovery

> time is very important. Any advice will be greatly appreciated.

>

[Guest guest]

, re the recliner question: My husband put two 4 x 4's

underneath the runners of the recliner. Now, it is easy for me to

get in and out.

My insurance paid for a hospital bed, so I went for it. Best thing I

ever did. Love that the knees and head come up. So comfy, especially

since for the first weeks I was unable to sleep through the night,

still can't really, but not due to pain, due to lack of tiring

activity during the day.

Also, you do need a bedside commode that doubles as a raised toilet

contraption (you set it right above the toilet bowl. And if you have

not too much help, you might spring for a cheapy plastic garden

chair, skinny enough to sit in your tub, so that you can sit on it

and take a shower.

You will be fine. It took me 7 years to decide. What an idiot I was

for waiting so long.

> I am scheduled to have THP the later part of January and have some

> questions that I haven't been able to find answers to. Maybe

> someone with the experience can help.

> 1. How long before you can drive? Can you drive with a clutch?

> 2. Most of the literature talks about a six week period before

you

> can do much. Is this so? How long did it take you to start

walking?

> 3. What about a chair. Is a recliner the best or an anti-gravity

> chair or? Is it necessary to have a lift chair?

> 4. Did you rent a hospital bed?

>

> After reading all of the literature I'm really apprehensive about

> having the surgery, but I have put it off for several years now

and

> now the pain is so severe that I have to, but.... I guess I'm

> scared.

> There is more to it, my husband is legally blind and cannot drive

or

> do alot. I normally take care of everything, that's why my

recovery

> time is very important. Any advice will be greatly appreciated.

>

[Guest guest]

Driving: You'll probably be asked to refrain from driving for 4 weeks

for right side, 6 weeks for the left. I believe these guidelines

pertain to automatic transmisions. Inquire of your doctor about

manual transmissions.

When can you " do much " ?: That all depends on what you call doing

much. I was shuffling around after a week at home, doing laundry,

loading and unloading dishwasher, fixing simple meals for myself and

my husband, all on the same floor of course. I felt really good and

wasn't on opioid pain meds by that time. You'll probably be walking

with a walker or crutches after one day in the hospital, increasing a

bit each day thereafter. By 3 months, I was pretty much finished

with any kind of walking aid. I also hired weekly house cleaning

service for 2 months. If friends ask how they can help, tell them

that running errands, giving you rides, etc. during the time you

can't drive will be much appreciated. Also it is a good idea, if you

usually do most of the cooking, to cook or shop ahead for a couple

weeks' worth of easy-to-defrost-and-prepare meals that you can nuke

for the 2 of you. Make your home safe by removing throw rugs and

clutter so you have easy movement through the house. And pay

attention to your bath, having grab bars installed if you think it's

necessary.

Chairs: No I don't consider a " lift chair " necessary at all. I

don't know what an " anti-gravity " chair is so I guess that isn't

necessary either! Ordinary furniture that you already have can be

made to work. Sofas aren't so great because you don't have two arms

to lift yourself with and some sofas are too low and soft. I didn't

sit on my couch for 3 months! You probably won't be comfortable

sitting much with your legs hanging down. Many people use a

recliner, elevating it on boards for added height. The kind that

swivel and rock aren't so good but I'm sure plenty of hippies have

used them anyway! For short sits, a dining chair with arms works

nicely. You need arms on your chairs to assist in rising and

lowering your body at first. Same with toilet - arms or grab bars

help. For a cheap solution, use a resin patio chair (stack two if

need be to make it higher). I actually preferred sitting on my bed

or chaise lounge to watch TV. Seats shouldn't be lower than the bend

in your knee. A boat cushion can help raise a chair if needed. I

carried one around in the car for several weeks, using it in a few

restaurants and theaters.

No, I didn't rent a hospital bed. Our bed at home worked just fine.

Being scared of the surgery comes with the territory. You'll be so

happy with your new hip. I put my replacements off (I have 2) for a

bit too long. Now they can't keep me home!

[Guest guest]

Depending on the quantity and quality of the possible home care you have available, you may want to talk with your MD about going to a ReHab facility from the hospital to get you going. Worth thinking about.

A. I. Gordonkeltic KAT <QelticKAT@...> wrote:

: I can relate to the fear. I hobbled for over a year before taking the plunge with RTHR. Thank God I did! I'm driving short distances (though my doc said wait 8 weeks. I was walking right away in hospital with walker (and pain meds). I use a regular chair with a gel cushion for height. (Not advised to use recliner secondary to trying like hell to get up from it.) Slept in my own bed on second story (used 1 crutch and railing to get up steps). I live alone with annoying cat so I too need to "recover quick". Being nervous is normal...I had the "runs" for 4 days prior to surgery from nerves alone (and I'm not the nervous type). Get the surgery...best decision I ever made. Good luck. Kat

Upcoming surgery

I am scheduled to have THP the later part of January and have some questions that I haven't been able to find answers to. Maybe someone with the experience can help.1. How long before you can drive? Can you drive with a clutch?2. Most of the literature talks about a six week period before you can do much. Is this so? How long did it take you to start walking?3. What about a chair. Is a recliner the best or an anti-gravity chair or? Is it necessary to have a lift chair?4. Did you rent a hospital bed?After reading all of the literature I'm really apprehensive about having the surgery, but I have put it off for several years now and now the pain is so severe that I have to, but.... I guess I'm scared.There is more to it, my husband is legally blind and cannot drive or do alot. I normally take care of everything, that's why my recovery

time is very important. Any advice will be greatly appreciated.

[Guest guest]

Hi Annie- While I'm not a little guy, or little girl for that

matter, I think I told you that I had CWD. It seems the downtime runs

about the same, which is 2wks. I'm 15 days now and doing

absolutely 'wonderful'!!

He will most likely spend the night, and it's a good idea he does. He

will be uncomfortable, but the pain isn't 'half' as bad, as it is

unfcomfortable. Now I'm not a child, but I have a low tolerance for

pain

I would say the pain lasted about a week, if not LESS, honestly, and

than afterwards, it was just SO uncomfortable! and of course the pain

from moving a certain way, or rolling on it in the middle of the

night, and thing's of that nature, and not to mention the packing,

but someone mentioned to me the day before my procedure, that it

wasn't as bad as I imagined to myself it would be, and when I look

back, they were right. It really isn't.

Now 15 days later, I can touch my ear, (fiddle with it) and what have

you, and there's really no pain. I'm working, functioning, etc, etc.

Your little guy will be GREAT! It's really not that bad as we imagine

it will be. I've read elsewhere about children and this type of

surgery from other's, and their children too did just fine, and so

will your's. I remember sitting in the ER with so many little kids

next to me, and like I said, we were all compairing our x's for

surgery. They were all troopers, and afterwards, as I was leaving to

go home, I passed one on the way out, and with all his little

stickers on his bandage, he was smiling like nothing had happened.

I Hope this helps some. Good luck.

[Guest guest]

Hi, Ann --

I feel your anxiety!! Our 6 y.o. just had his second surgery

yesterday. Look under " Files " over there on the left and see the

checklist I put together from info people shared with me here in this

forum. Couple of corrections:

* We didn't need our CAT scan films with us, so you probably don't

need to bring them.

* Pack as if you have to stay over night. We didn't stay the first

surgery, but did stay this last time. You just can't predict, so just

have a change of clothes for you and your son, in case.

I have found that my son experiences very little pain, actually (the

day after) and is pretty much himself within less than 24 hours. The

hardest thing is keeping them still for the one month exertion

restriction!!

Honestly, it is extremely nerve wracking, but keep asking questions,

look at the checklist, prepare for a long day, but all in all, it's

truly not as dreadful as you fear. I've come out here on the other

side of the tunnel, and though we didn't like the journey and know

what you're dealing with, take heart in knowing that knowledge is

power, and all will be okay.

Hope that helps. All the best to you and your son.

Alice

>

> Hi all,

>

> My 3 year old will be having surgery with Dr. Selesnick on April

26th.

> He has a large c-toma and will probably need a CWD procedure. I am

> very nervous about the operation as well as the recovery. Can anyone

> out there fill me in on the recovery for such a little guy? Any

tricks

> that may help? Any words of wisdom are greatly appreciated.

>

> Thanks, Annie