upcoming surgery

[Guest guest]

Good Luck to you, but why are they removing it?? SHU

[Guest guest]

Hello

I just thought I would write we all my surgeries I have had. Just to tell

you a little about myself, I have had arthritis since I was 8 i am now 26.

Last oct I had surgery on my left elbow but mine was a replacement. I am

sure your daughter will do great. My radius head was bigger then it should

of been, but I had other problems in my elbow that cause me to have the

elbow replacement. I do know that they took my radius head out. Meghann

sounds like she is a tought worker and that she will get through this just

fine. I know this probably hasn't help much, but maybe have given a few

words of encourgement. I do know the first surgery is always the scariest.

I had my first one when I was 10. I will go for now. If you want to talk

feel free to write me anytime.

JRA World/Arthritis Insight

http://jraworld.arthritisinsight.com

The World is getting smaller all the time-

share, live, laugh, learn...you never have to feel alone...

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

Check out my personal website

http://www.geocities.com/acnelson24

Upcoming surgery

> Hi All,

>

> Well we just got back from our JRA clinic. The news was much

different

> than what I/we had anticipated.

> Meghann has had two major sites (since dx) where her JRA has affected

> her the most. Other sites are there but not quite as active or

troublesome.

> The first site is her left knee. With a lot of hard work etc it seems to

be

> coming close to normal. She is almost at full extention and her flexion

is

> much much better not perfect but workable. Her second site is her right

> elbow. At first it wasn't too bad but in the last year she went to the

> major contracture. She has less than a 90 degree flexion and I think they

> said 30 degree extension.

> They decided to take x-rays of the site because one of the ped

rheumy's

> thought that her elbow might actually be dislocated. The second (her reg

> rheumy) was delayed due to a 2 hour drive/on call the night before/pretty

> intense fog. When we returned from getting the x-rays her reg. rheumy was

> there and began her exam. (Meghann got the works that day--3 full

> examinations). The 1st rheumy pulled out her x-rays and began to look at

> those --meanwhile her reg. rheumy was in the process of examining the

elbow,

> asking if it hurt, thinking outloud about the possibility of a cortisone

> shot; when the 1st rheumy said you may want to look at this. Room came to

a

> complete halt. The room by the way consisted of 2 pediatric rheumies and

> intern, two students, a PT, and the OT--not counting me and Meghann.

> Normally not everyone is in there at the same time but I think they put a

> red flag at our door.

> Looking at the x-rays which of course I can't read but could see

> something wasn't totally kosher. There were calcium burrs and something

> else. like an overgrowth. Neither of the ped rheumys liked what they saw

> and called in an orthopedic Dr/surgeon. She looked at the x-rays. The

> upshot was that a shot would not fix it. Physical Therapy would not fix

> it...more aggressive splinting would not fix it. Surgery was the only

> course.

> First thought in my mine was a joint replacement. NOpe, they are

> removing the head of (and if forget which one right now but I am leaning

> towards the radius) radius or ulna. They feel she has gotten most if not

> all of her growth.

> What was really nice is that they talked to Meghann about it rather

than

> me. Stating she needs to be a major part of the decision making process.

> Mom and Dad have rights of veto, but if there was cross decisions then

they

> would have to be fixed before any course was decided on.

> They explained the hospitalization, the surgery, the possible

> complications, she told her approximately how many times she had performed

> the surgery and her success rate (100%), she also told her that other

> equally skilled doctors have had complications (fixable) so it was

possible

> that it could happen to her (DR). Told her it was elective surgery. She

> could have it fixed or leave it alone. She chose to go with the surgery.

> Has anyone every heard of this type of surgery? Any suggestions would

> be welcome. I will be getting in touch with her school to make sure

things

> will be in place for her return. Of course it's her right arm and she is

> right handed so not sure what if any her writing capacity will be...etc

etc

> etc...She will be casted but not sure how long.

> We have approx. 3 months to get all the logistics figured

> out...Meanwhile I know I will have questions for the Dr. who gave me her

> number to contact her.

> Sharon and Meghann

> JRA and PRS

>

>

>

>

> For links to websites with JRA info please visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

> To manage your subscription settings, visit:

> subscribe/

>

[Guest guest]

carlene, i love your angels. thanks

[Guest guest]

oh dear Marsha,

does ice help at all? i know once you decide to do the surgery, it is hard to

wait but hang in there. knowing what i know of Dr. K from his website, you will

be in good hands. did he suggest anything for you do or take until the surgery?

just because the Rolfing is working for me, that does not mean it would address

your problem. i am using it to realign my spine for which it is intended. once

the ablation wears off, i may be evaluating some surgery again especially if the

leg pain comes back. but my hope is that this new physical and spiritual

therapy program will be the answer for me. i have not gotten an evaluation from

Dr. Kuflik on my MRIs nor from Dr. Schiffer in CA yet. will be interesting to

hear what they have to say.

try to rest as much as you can, easier said than done i know. i have a bug

today, just finished some of my online work and am headed for the couch. i will

send you some comforting angels, not the ones that have the bug!

take care....and keep us posted.

Carlene in MT

Re: TENS

carlene, dr. kuflik is doing the surgery. i cannot stand the pain anymore.

nerve pain in the front of my thight and into my knee and it is just

horrible.

i would do rolfing if i knew what it was. but i am finally at the pooint

where i am ready and anxious for surgery. one level. L3-L4 where my spondy

is. and laminectomy (now...there's a word).

the doctor said that that is what is causing all this nerve pain. and he

said it wasn't going to get better unless surgery. and i absolutely believe

him.

i cannot stand this right now, it is 1:29 p.m. and i am not at work. i am

home, in the dark, on the couch. waiting for my body to calm down. i

actually cancelled PT bec i just wanted to go home and crawl onto the couch.

marsha

[Guest guest]

marsha,

hope they are helping. i tried to pick the healthy ones that were not sneezing,

coughing, etc.!

i had a laminectomy 10 years on L3-4 and L4-5 to release low back and right leg

pain. they basically slice off pieces of bone around the nerve canals where the

nerves are being pinched. it is a decompression procedure. unfortunately, i

did not have a good doctor and was not well informed about the whole situation.

he was too aggressive in the amount of bone he removed and i have lots of bone

spurs, scar tissue and the loss of that support along with my osteoarthritis has

caused my spine to slump. and my recovery was long and painful and the doctor's

solution was to go in a do more surgery!?? i said no!

and there is some stenosis, especially on the right, with my degenerative disk

disease which may be causing my leg pain. but if i can use the Rolfing,

restorative yoga and special physical therapy to realign and lengthen my spine

and strengthen my muscles i think that will help a lot. i was so happy after my

last Rolfing session when i came out, got in my car and had to adjust my rear

view mirror because i was taller!!

the arthritis is degenerative and i continue to search for herbal remedies to

slow it down. am taking a special red algae now that is supposed to help. i

took glucosamine for years and years and saw so effect so i have dropped that

expense.

perhaps after your surgery and your recovery period you may want to explore

Rolfing to correct the many misalignments that occur when we are in constant

pain. just be sure to use a Rolfing master; mine just celebrated his 20th year.

will the surgery correct your spondylitis? i do not have that.

i have been napping but got up to take some more cold meds. so back to the

couch.

i will keep thinking about you; if you catch a brief blue movement out of the

corner of your eye it is one of the MT angels come to comfort you.

Carlene

Re: upcoming surgery

carlene, i love your angels. thanks

[Guest guest]

My surgery with Dr. Glazer @ BID is Monday 3/21, 22 & 23 and I'm extremely

scared. I know Dr. G is a great surgeon, but I'm being fused from T-3 to S-1

with the rods etc, and wondering if anyone has had this extreme surgery. In

fact, I'm terrified.

If anyone has any words of encouragement, It would be greatly appreciated.

Thanks - from Syracuse, NY

[Guest guest]

My memory is horrible right now. I believe I'm fused from T7-S1, which is almost as much. I'm checking email on my iPhone these days, so it's harder to look stuff up. I didn't have the entire fusion done in one surgery. I was fused down to L3 in 1993 (original scoliosis surgery) and down to S1 during this past surgery.

What about being so fused terrifies you?On Mar 16, 2011, at 8:17 PM, " chrismyers218 " <chrismyers218@...> wrote:

 

My surgery with Dr. Glazer @ BID is Monday 3/21, 22 & 23 and I'm extremely scared. I know Dr. G is a great surgeon, but I'm being fused from T-3 to S-1 with the rods etc, and wondering if anyone has had this extreme surgery. In fact, I'm terrified.

If anyone has any words of encouragement, It would be greatly appreciated.

Thanks - from Syracuse, NY

[Guest guest]

,

I had surgery with Glazer, two days back to back. He did the anterior surgery

the first day and posterior the second. He removed the old 18 in harrington rod,

all of it and proceeded with a double tier titanium rod setup with 17 screws, 3

osteotomies, a few disk spacers, etc. I know it seems the surgery is extreme. It

is not unusual to freak out a bit a few days before surgery. You have to remind

yourself why you are doing the surgery in the first place whether it be to

improve your quality of life, reduce pain, stand up straight, etc. You need to

find your reason again and let that be your anchor. He is a brilliant surgeon

and I have full confidence you are in great hands. If I can help soothe the

nerves, send a private email and I will pass along my number and you can call

me. C

>

> My surgery with Dr. Glazer @ BID is Monday 3/21, 22 & 23 and I'm extremely

scared. I know Dr. G is a great surgeon, but I'm being fused from T-3 to S-1

with the rods etc, and wondering if anyone has had this extreme surgery. In

fact, I'm terrified.

> If anyone has any words of encouragement, It would be greatly appreciated.

> Thanks - from Syracuse, NY

>

[Guest guest]

My heart goes out to you and I can imagine some of what you’re going through. The waiting is terrible & the uncertainty of not knowing what lies ahead makes everything worse. I’m fused from T-3 to S-1. My latest surgery was February 1, 6 weeks ago, when Dr. Bridwell fused me T-3 to T-10. Prior to that I was fused T-10 to L-5 in 1991 & subsequently developed Flatback. In June of 2009 Dr. Bridwell took out some of the old hardware & put in new & extended my fusion to S-1. I’ve been back at work for a couple of weeks, came back at one month post op, & could probably gone back earlier. I started working via computer the day after I got home from the hospital.. I’ve been babying my back, as Dr. B. I instructed me. I have more issues than most, since I have bi-lateral hip replacements & then hip revisions, so those muscles are pretty much gone. If I fall I’d be in big trouble, so Dr. B. makes me use a walker. To my surprise, Dr. B didn’t have to fuse me to T-1, so I can move my neck normally. (mostly normally—I can’t hold a phone between shoulder & ear anymore, but that’s no great loss.) I don’t feel nearly as restricted as I expected to. Yesterday I started driving, much to my husband’s dismay. I too have trouble turning my head to see things from the side, and this is probably my biggest problem. I second Bellaruth’s CD. It’s not too late for you to get it & start listening to it over & over. You know you are in good hands. I’ll be thinking of you & sending you positive energy! DorcasSt. Louis From: [mailto: ] On Behalf Of CurranSent: Wednesday, March 16, 2011 9:15 PM Subject: Re: [ ] upcoming surgery My memory is horrible right now. I believe I'm fused from T7-S1, which is almost as much. I'm checking email on my iPhone these days, so it's harder to look stuff up. I didn't have the entire fusion done in one surgery. I was fused down to L3 in 1993 (original scoliosis surgery) and down to S1 during this past surgery. What about being so fused terrifies you? On Mar 16, 2011, at 8:17 PM, " chrismyers218 " <chrismyers218@...> wrote: My surgery with Dr. Glazer @ BID is Monday 3/21, 22 & 23 and I'm extremely scared. I know Dr. G is a great surgeon, but I'm being fused from T-3 to S-1 with the rods etc, and wondering if anyone has had this extreme surgery. In fact, I'm terrified.If anyone has any words of encouragement, It would be greatly appreciated.Thanks - from Syracuse, NY

[Guest guest]

Dorcas, You are an inspiration!!!! My fusions are being extended to T10 from S1 (now fused L2-S1 & C1-T1) and my flatback corrected with an osteotomy in May. If you can be back at work a month after all you’ve had done I have little to worry about. You are one strong, tenacious woman!!! I hope you continue to do well. Best, Kate

From: Dorcas Cecil Sent: Friday, March 18, 2011 3:13 PM

Subject: RE: [ ] upcoming surgery

My heart goes out to you and I can imagine some of what you’re going through. The waiting is terrible & the uncertainty of not knowing what lies ahead makes everything worse.

I’m fused from T-3 to S-1. My latest surgery was February 1, 6 weeks ago, when Dr. Bridwell fused me T-3 to T-10. Prior to that I was fused T-10 to L-5 in 1991 & subsequently developed Flatback. In June of 2009 Dr. Bridwell took out some of the old hardware & put in new & extended my fusion to S-1.

I’ve been back at work for a couple of weeks, came back at one month post op, & could probably gone back earlier. I started working via computer the day after I got home from the hospital.. I’ve been babying my back, as Dr. B. I instructed me. I have more issues than most, since I have bi-lateral hip replacements & then hip revisions, so those muscles are pretty much gone. If I fall I’d be in big trouble, so Dr. B. makes me use a walker.

To my surprise, Dr. B didn’t have to fuse me to T-1, so I can move my neck normally. (mostly normally—I can’t hold a phone between shoulder & ear anymore, but that’s no great loss.) I don’t feel nearly as restricted as I expected to.

Yesterday I started driving, much to my husband’s dismay. I too have trouble turning my head to see things from the side, and this is probably my biggest problem.

I second Bellaruth’s CD. It’s not too late for you to get it & start listening to it over & over.

You know you are in good hands. I’ll be thinking of you & sending you positive energy!

Dorcas

St. Louis

From: [mailto: ] On Behalf Of CurranSent: Wednesday, March 16, 2011 9:15 PM Subject: Re: [ ] upcoming surgery

My memory is horrible right now. I believe I'm fused from T7-S1, which is almost as much. I'm checking email on my iPhone these days, so it's harder to look stuff up. I didn't have the entire fusion done in one surgery. I was fused down to L3 in 1993 (original scoliosis surgery) and down to S1 during this past surgery.

What about being so fused terrifies you?

On Mar 16, 2011, at 8:17 PM, "chrismyers218" <chrismyers218@...> wrote:

My surgery with Dr. Glazer @ BID is Monday 3/21, 22 & 23 and I'm extremely scared. I know Dr. G is a great surgeon, but I'm being fused from T-3 to S-1 with the rods etc, and wondering if anyone has had this extreme surgery. In fact, I'm terrified.If anyone has any words of encouragement, It would be greatly appreciated.Thanks - from Syracuse, NY