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Hi all :-)

Welcome Lynn!!! I am sorry its taken me so many days to say so!!!

Promise to introduce myself more formally in another email but wanted to

comment on the biopsy since I just had mine a little more than a month

ago now.

Mine was taken from the thigh muscle, although we did discuss the other

options of the calf or upper arm, but decided this was one of the more

affected areas, and I was loathe to think about having an incision on my

calf (just SEEMED like it would hurt more afterwards!!). At the time,

my weakness was less descript than it is now, but interestingly (atleast

to me) I am seeing more deterioration and having more strength issues

with my calves than I am any other areas right now. But I digress.....

Something that I have not seen discussed alot here is the use of

anesthesia when there is a muscle disease suspected. General anesthesia

is more of a risk for those with muscle disease because there is a

higher incidence of a condition called Malignant Hyperthermia. MH is a

reaction the body can have to anesthesia, and while they are generally

prepared to deal with it if it happens, its still a risk not worth

taking when there are other options. Another issues with general

anesthesia is that it can itself cause atleast temporary muscle

weakness, so when your already dealing with that to begin with, it makes

sense to try and avoid it. Besides, all too often recovery from a

general is alot tougher than one expects.

They were prepared to knock me out when I got to the OR prep

room.....even though the doc and I had already discussed that I only

wanted a local (one of those times when its a good thing the patient

knew more than the person getting me ready!!). What we did was a

" twilight " or " conscious " sedation (using Verced) that made it so I

don't remember a thing, but was not actually put under for the

procedure. I just hope I actually kind of slept and didn't talk their

ears off....LOL. Then, once I was " out " they did a local at the site

they were taking the muscle from.

Recovery was MUCH better than I expected. I was up walking gingerly

that day, more because I was worried I would hurt myself than because

there was actually any pain. In fact, I didn't feel much of anything

for days from that area!! At the most I was moving slower and attempted

to not overdo, and at the worst I had some " twinges " here and there when

I did something that stressed that area. Two days out and I was walking

pretty much normally and I never did even have to take a tylenol for it,

much less a pain pill (mileage may vary on this one).

One thing that I have, that I have read others have experienced also, is

that they apparently cut some nerves in my thigh and I still have areas

that have no feeling. On the one hand, its probably why mine never

hurt, on the other its a little strange and I am still trying to get

used to this numb area down there. Its not really an issue persay, just

something I thought I'd mention in case you experience it too.

Will be thinking of you (and Bill, you too hun!!) as you all have this

procedure done. I hope and pray it gives both of you a few more

answers.

BIG hugs,

, PM/DM(?depends on which doctor your talking to right now, but

most likely DM?)/possibly Mitochondrial Disease

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Rich

So the first time you had the biopsy the location was confirmed by an

MRI... that makes sense. Your only the second person that I've heard

of with the biopsy done on the calf. I've had trouble with my calf

muscles from the get go. At first they thought I had IBM but the

biopsy and other things showed PM. Hope you have a good day.

Vicki

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While I have never had a muscle biopsy, I have had other surgerys and it is normal for the area around the incision to be without feeling for some time. So a "numbness" around the scar would be normal. I am sure Fern can expand on this for us.

Cari

---- Original Message -----

From: Kass

To: OurMyositis

Sent: Monday, October 01, 2001 2:09 PM

Subject: Re: biopsy

Hi all :-)Welcome Lynn!!! I am sorry its taken me so many days to say so!!!Promise to introduce myself more formally in another email but wanted tocomment on the biopsy since I just had mine a little more than a monthago now.Mine was taken from the thigh muscle, although we did discuss the otheroptions of the calf or upper arm, but decided this was one of the moreaffected areas, and I was loathe to think about having an incision on mycalf (just SEEMED like it would hurt more afterwards!!). At the time,my weakness was less descript than it is now, but interestingly (atleastto me) I am seeing more deterioration and having more strength issueswith my calves than I am any other areas right now. But I digress.....Something that I have not seen discussed alot here is the use ofanesthesia when there is a muscle disease suspected. General anesthesiais more of a risk for those with muscle disease because there is ahigher incidence of a condition called Malignant Hyperthermia. MH is areaction the body can have to anesthesia, and while they are generallyprepared to deal with it if it happens, its still a risk not worthtaking when there are other options. Another issues with generalanesthesia is that it can itself cause atleast temporary muscleweakness, so when your already dealing with that to begin with, it makessense to try and avoid it. Besides, all too often recovery from ageneral is alot tougher than one expects.They were prepared to knock me out when I got to the OR preproom.....even though the doc and I had already discussed that I onlywanted a local (one of those times when its a good thing the patientknew more than the person getting me ready!!). What we did was a"twilight" or "conscious" sedation (using Verced) that made it so Idon't remember a thing, but was not actually put under for theprocedure. I just hope I actually kind of slept and didn't talk theirears off....LOL. Then, once I was "out" they did a local at the sitethey were taking the muscle from.Recovery was MUCH better than I expected. I was up walking gingerlythat day, more because I was worried I would hurt myself than becausethere was actually any pain. In fact, I didn't feel much of anythingfor days from that area!! At the most I was moving slower and attemptedto not overdo, and at the worst I had some "twinges" here and there whenI did something that stressed that area. Two days out and I was walkingpretty much normally and I never did even have to take a tylenol for it,much less a pain pill (mileage may vary on this one).One thing that I have, that I have read others have experienced also, isthat they apparently cut some nerves in my thigh and I still have areasthat have no feeling. On the one hand, its probably why mine neverhurt, on the other its a little strange and I am still trying to getused to this numb area down there. Its not really an issue persay, justsomething I thought I'd mention in case you experience it too.Will be thinking of you (and Bill, you too hun!!) as you all have thisprocedure done. I hope and pray it gives both of you a few moreanswers.BIG hugs,, PM/DM(?depends on which doctor your talking to right now, butmost likely DM?)/possibly Mitochondrial Disease

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Hi !

I think I'd want the muscle biopsy from the worst

muscle! But today, I'm feeling pretty good...not much

pain at all (as long as I don't try to hook my

bra...sorry guys! LOL!) First day in months! Wahoo!

But golly is my scalp itchy today!

Wednesday I have a skin biopsy...with my docs it's one

slooow step at a time! Don't know yet when the muscle

biopsy will be scheduled. Probably get an EMG, too.

Lynn

--- Kass wrote:

> Hi all :-)

>

> Welcome Lynn!!! I am sorry its taken me so many

> days to say so!!!

> Promise to introduce myself more formally in another

> email but wanted to

> comment on the biopsy since I just had mine a little

> more than a month

> ago now.

>

> Mine was taken from the thigh muscle, although we

> did discuss the other

> options of the calf or upper arm, but decided this

> was one of the more

> affected areas, and I was loathe to think about

> having an incision on my

> calf (just SEEMED like it would hurt more

> afterwards!!). At the time,

> my weakness was less descript than it is now, but

> interestingly (atleast

> to me) I am seeing more deterioration and having

> more strength issues

> with my calves than I am any other areas right now.

> But I digress.....

>

> Something that I have not seen discussed alot here

> is the use of

> anesthesia when there is a muscle disease suspected.

> General anesthesia

> is more of a risk for those with muscle disease

> because there is a

> higher incidence of a condition called Malignant

> Hyperthermia. MH is a

> reaction the body can have to anesthesia, and while

> they are generally

> prepared to deal with it if it happens, its still a

> risk not worth

> taking when there are other options. Another issues

> with general

> anesthesia is that it can itself cause atleast

> temporary muscle

> weakness, so when your already dealing with that to

> begin with, it makes

> sense to try and avoid it. Besides, all too often

> recovery from a

> general is alot tougher than one expects.

>

> They were prepared to knock me out when I got to the

> OR prep

> room.....even though the doc and I had already

> discussed that I only

> wanted a local (one of those times when its a good

> thing the patient

> knew more than the person getting me ready!!). What

> we did was a

> " twilight " or " conscious " sedation (using Verced)

> that made it so I

> don't remember a thing, but was not actually put

> under for the

> procedure. I just hope I actually kind of slept and

> didn't talk their

> ears off....LOL. Then, once I was " out " they did a

> local at the site

> they were taking the muscle from.

>

> Recovery was MUCH better than I expected. I was up

> walking gingerly

> that day, more because I was worried I would hurt

> myself than because

> there was actually any pain. In fact, I didn't feel

> much of anything

> for days from that area!! At the most I was moving

> slower and attempted

> to not overdo, and at the worst I had some " twinges "

> here and there when

> I did something that stressed that area. Two days

> out and I was walking

> pretty much normally and I never did even have to

> take a tylenol for it,

> much less a pain pill (mileage may vary on this

> one).

>

> One thing that I have, that I have read others have

> experienced also, is

> that they apparently cut some nerves in my thigh and

> I still have areas

> that have no feeling. On the one hand, its probably

> why mine never

> hurt, on the other its a little strange and I am

> still trying to get

> used to this numb area down there. Its not really

> an issue persay, just

> something I thought I'd mention in case you

> experience it too.

>

> Will be thinking of you (and Bill, you too hun!!) as

> you all have this

> procedure done. I hope and pray it gives both of

> you a few more

> answers.

>

> BIG hugs,

> , PM/DM(?depends on which doctor your talking

> to right now, but

> most likely DM?)/possibly Mitochondrial Disease

>

>

>

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Hi Cari :-)

Thanks for the feedback on this. Have really never had any other

surguries so this was a first for me. Actually though, its not the

scar thats numb, but rather an area about 2"x4" about an inch to one side

of it (outer side of my thigh). There is pretty normal feeling at

the site of the incision and every where else. Not sure if this is

the same kind of numbness your talking about or not :-)

BIG hugs,

Cari Dorsey wrote:

While I have never

had a muscle biopsy, I have had other surgerys and it is normal for the

area around the incision to be without feeling for some time. So

a "numbness" around the scar would be normal. I am sure Fern can

expand on this for us.Cari

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,

That is the same kind of numbness that I mean. I had knee surgery, many

years ago and it took a long time for the feeling all around my knee to come

back. My C-section scar was the same thing. A few inches around was numb

for a long time. If you soak in a tub for a long time you will notice that

the skin around your scar doesn't get wrinkly or react like your other skin

because the nerves have been damaged but they will get better. Fern, am I

right?

Hugs,

Cari

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: biopsy

>Date: Mon, 01 Oct 2001 22:04:05 -0500

>

>Hi Cari :-)

>

>Thanks for the feedback on this. Have really never had any other

>surguries so this was a first for me. Actually though, its not the scar

>thats numb, but rather an area about 2 " x4 " about an inch to one side of

>it (outer side of my thigh). There is pretty normal feeling at the site

>of the incision and every where else. Not sure if this is the same kind

>of numbness your talking about or not :-)

>

>BIG hugs,

>

>

>Cari Dorsey wrote:

>

> > While I have never had a muscle biopsy, I have had other surgerys and

> > it is normal for the area around the incision to be without feeling

> > for some time. So a " numbness " around the scar would be normal. I am

> > sure Fern can expand on this for us.Cari

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Thanks Cari!! I had EXPECTED there to be a different feeling at the

site of the incision, so this other numbness just seemed strange!!

Atleast knowing I was not the only one helps. I get more and more

used to it everyday, so however long it takes to come back I guess I'll

survive....LOL. Seem to be having to "get used" to ALOT of things

these days!!! ARGH!!

BIG hugs,

Cari Dorsey wrote:

,

That is the same kind of numbness that I mean. I had knee

surgery, many

years ago and it took a long time for the feeling all around my

knee to come

back. My C-section scar was the same thing. A few inches

around was numb

for a long time. If you soak in a tub for a long time you

will notice that

the skin around your scar doesn't get wrinkly or react like your

other skin

because the nerves have been damaged but they will get better.

Fern, am I

right?

Hugs,

Cari

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Oh yrs, ...I've had (hanging my head in

" something! " ) 15 surgeries...and sometimes the feeling

in the area is just not there! And yes, it's an icky

feeling.

Lynn

--- Kass wrote:

> Thanks Cari!! I had EXPECTED there to be a

> different feeling at the

> site of the incision, so this other numbness just

> seemed strange!!

> Atleast knowing I was not the only one helps. I get

> more and more used

> to it everyday, so however long it takes to come

> back I guess I'll

> survive....LOL. Seem to be having to " get used " to

> ALOT of things these

> days!!! ARGH!!

>

> BIG hugs,

>

>

> Cari Dorsey wrote:

>

> > ,

> > That is the same kind of numbness that I mean. I

> had knee surgery,

> > many

> > years ago and it took a long time for the feeling

> all around my knee

> > to come

> > back. My C-section scar was the same thing. A

> few inches around was

> > numb

> > for a long time. If you soak in a tub for a long

> time you will notice

> > that

> > the skin around your scar doesn't get wrinkly or

> react like your other

> > skin

> > because the nerves have been damaged but they will

> get better. Fern,

> > am I

> > right?

> > Hugs,

> > Cari

>

=====

*~*~*~*You can drown in your stream of consciousness. Make sure

the drain runs freely.~*~*~*~

__________________________________________________

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  • 1 year later...

When I had mine done in 1993, a radiologist did it. Now, increasingly,

nephrologists are doing them too.

I lay on the table on my right side, and the monitor the radiologist was

using was positioned so that I could see the long tube going in the whole

time. I found that very interesting.

They took five samples in all, checking each one in a pathology lab across

the hall before coming back and saying another sample was needed. It wasn't

painful really, but the muscle tissue they have to go through can be pretty

solid, so the radiologist really had to push to get the tube in. Then for

each sample, all I could feel was the tube being " pushed around " in there -

just the pressure of the movement, no real pain.

After it was done, they wheeled me up to a room and I was discharged the

next morning. I don't recall much about that, except that nurses kept

checking for any bleeding. In the meantime, while I was up there, the neph

sent the renal dietician to see me. She explained the " controlled protein

diet " I was supposed to be on from that point on. After I moved to another

city a year later, they pretty much said to forget about any diet.

Pierre

Re: Biopsy

> Everyone keeps talking about the position they were in. What was that

exactly? I was on my stomach and he went in through my back. I was never

told to take it easy afterward or to lay down. I did both anyway since I

was pooped and a little goofy from the pain meds they ended up giving me.

Jen

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  • 4 months later...

Hi Debbie. Hashimotos is more an inflammation rather than something

associated with cancer. But I'm sure your doc will help steer you in

the right direction!

Janie

> I'm seeing the do in a couple of weeks of weeks. My thyroid is

really

> enlarged so I'm wondering should I request a biopsy. I have

> hashimottos.

>

> Blessings,

> Debbie K.

>

>

>

>

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