Dwyer Instrumentation?

[Camille]

Does anyone out there have the hardware called Dwyer Instrumentation?

I've yet to hear of anyone else who has it, but I know you're out there!! It's very "old stuff". Now, I hear that it was way outdated back when I had it. Oh, how we love to hear things like that!!!!

It's basically these huge screws that go through the vertebrae with a cable that connects to the end of 'em, which they tighten during the surgery, to literally correct the curvature.
And it's an anterior procedure, where they go in from the front.

Fortunately, scars have never bothered me. It's a good thing!!

Camille

[LindaRacine]

Hi Camille...

I have Dwyer on the front of my spine (in addition to C-D on the back of my spine).

The medical community found out pretty quickly after they started using it, that it wasn't strong enough to hold the vertebrae in place without movement. So, most patients who had just Dwyer (or Zielke, which is very similar), had their hardware break.

My surgeon sometimes uses it in conjunction with posterior systems. He puts the Dwyer instrumentation in first to get good correction on the stiff part of the curve, then he places fusion material and posterior hardware to hold the spine while fusion takes place.

Regards,
Linda

[Camille]

Dwyer

Thanx Linda. I knew there had to be others out there with it. When was your surgery?

I'm sure you've mentioned it in other postings, I just can't remember right now.

You've either done a lot of homework, or your surgeon is a lot more forthcoming than mine. I guess what I'm trying to say is, where do you get your info.? Are there any resources out there that have been especially helpful to you?

Camille

[LindaRacine]

Hi Camille...

My surgery was in 1992.

I run a scoliosis support group in the San Francisco area, so I have access to not just my own surgeon, but about a dozen others as well. I also read all published scoliosis research, and attend spine conferences whenever I can.

I've got links to what I think are the best (or most interesting) on my website: http://www.scoliosislinks.com

Regards,
Linda

[Lisa J]

Camille,

I also have the Dwyer instrumentation and didn't even find out what it was called until last year. They anteriorally (through my side where they removed a rib) fused T5-T10 with the Dwyer in the first of 2 surgeries. Two weeks later they fused posteriorally T4 - L3. This was all done in May 1990 in Hamilton, Ontario, Canada. I am now 27 and I was 13 at the time. I didn't have any problems until a year ago.

How do they know if there is any problems with the instrumentation? I have these x-rays (only one shows the Dwyer and it's a fuzzy one at that) and every time I show them to a doc, they say everythings fine (even though you can't really see the one entire piece of hardware because it's fuzzy!) I've heard other people have all kinds of tests and everything looks OK, but when they have surgery, they find all kinds of things wrong! That scares the crap out of me! What if there really is something screwy (mind the pun, must keep up with the humour)?

Lisa

[LindaRacine]

Hi Lisa...

I've seen x-rays of broken Dwyer hardware, and it's pretty obvious. So, I wouldn't worry about it at this point. I think that it mostly broke when people were only fused from the front.

Regards,
Linda

[Ms. Scarlett]

Dwyer Instrumentation

I've had the Dwyer Procedure done way back in 1978 when I was 16. The surgeon went in anterior on the right side and fused ten vertebrae of my lumbar spine. Body cast put on for 3 months and a Milwakee Brace for 3 months after that. Whole spine should have been done then, as the upper part of my back fell apart over time.

I've had the Luque instrumentation done in 2003 to the thoracic spine so now I'm wired for sound. Immediate bracing required after surgery which was designed to keep me in complete traction from my head to my butt. No mobility whatsoever.

The top part of the Dwyer Procedure had to be stablized with the overlapping Luque instrumentation. It's been a real treat - alot of pain and I can't return to work.

[Camille]

Dwyer

Ms. Scarlett,
During your original surgery, did they fuse you down to the sacrum? Have you had hip problems? or leg pain? Or maybe I should be asking what problems have you not had? I am not trying to make light in any way. Sounds like you're definitely wired for sound.
I'm just curious because I will likely have to be fused all the way down at some point and I like to get as much feedback as possible from those who have already been there.

Thank you for your posting,
Camille

[Ms. Scarlett]

Re: Wiring...

Hello Camille:

They did not wire me down to the sacrum and that is the only place that they have not wired me - YET - this is because if they were to do that then I would be further limited to my mobility. It is now very vulnerable and they predict that eventually I will need to be wired there as the area is currently broken down and actually curved like a banana according to the surgeon.

Current mobility is okay but not the best. I do suffer hip pain due to them realigning my hips during the course of the last surgery - in fact that was the most painful part after the surgery - I had gone 24 years being completely misaligned.

The surgeon indicated to me that he didn't want to fuse the sacrum area because it would cause alot of problems for me and doesn't want to do it unless it's absolutely necessary.

Because I have osteoporosis (sp) combined with all the other stuff, I find our Canadian winters and fall to be a very difficult time physically for me. The dampness sets into every bone I have it seems. I take anti inflamatories and pain killers regularly just to keep me mobile.

I do have alot of pain in the sacrum area because there is so much pressure there and it is not stable. Have to lie down alot during the day just to take the pressure off.

I have a patch on my back that is completely numb from the last surgery - about 6" x 12" where the incision is - can't feel anything touching it but still feel pain from arthritis - have to be careful with what I do as to not injure it.

I was reviewing the surgical notes from the last procedure and I guess I had alot of bleeding on the O.R. table and required a blood transfusion. I contributed one pint of my own blood but had 4 donations from other doners during the course of the transfusion - there are no ill effects to date.

My posture sucks even though I've been straightened - still tilt forward alot but that can't be corrected. It's just the way it is. As long as I'm upright then I'm happy - I've seen my mother who was 5'11" tall shrink down to 5'5" which is a huge difference - that's why I had the second surgery and I had a condition called "falling off" according to the surgeon.

As for pain - daily arthritis pain - and because I'm over 40 I think has alot to do with it. Hope this helps you a bit .

If your surgeon feels it is necessary to have the sacrum fused then you might want a second opinion - do research on the internet to find out cause and effect of procedure - find out what your limitations will be. Good luck with it.

[Lisa J]

Ms. Scarlett,

Hi, my name is Lisa and I also have the Dwyer instrumention and I had it done when I was 13, although I am only 27 now. They also used a different system for the posterior fusion of T4 - L3. I just wanted to touch base with you because you are so close to me (I live in Cambridge) and I was wondering about when your pain started and such. Mine started about a year and a half ago and they won't do anymore fusion at this point, because the hardware and fusion are fine and I'm too young. I'm sure they will eventually fuse more as the endpoints become less stable. I also have osteoarthritis and constantly have pain. I too, often need to lie down to alleviate some of the pain. I also find the Canadian winters very difficult and damp weather hard. I unfortunately get no break in the summer as the humidity is a major trigger for migraines (another ailment I suffer from).

My surgeries at 13 sound similar to your recent surgery with regards to numbness (most of mine has dissapated) and with the blood transfusions. Luckily, I've been tested for everything under the sun.

I guess my biggest concern right now is if I'm having this much pain at 27, what will I be like in 10, 15, 20 years? Have you always had pain? I'm also curious if you have children? I've been going through the pros and cons in my head for the last while as to whether or not I should have children. The biggest concern not to would be how pregnancy would affect me and if it would make me worse. I am also concerned about passing it on, but my biggest concern is the effect it will have on me. I don't want to have a child and then end up not being able to take care of him/her due to my being in way too much pain. And I wouldn't be able to take anything for the pain during the pregnancy and I take many daily meds for management of my pain.

I'm also curious as to who your doctor is. I'm trying to find a doctor who specializes in adult revision surgery and/or long term effects of original fusions.

Thanks for all your help!

Lisa

[Ms. Scarlett]

Things in common...

Hi Lisa

It's funny, I just moved from Cambridge to Waterloo only 2 months ago and was living there for 7 years.

I have 3 children 18, 20 and 22 all delivered by C-Section. The reason for that is because my first child decided to go north instead of south and became breach, the second reason is because I had so much instrumentation due to having the Dwyer proceedure done that there would be nowhere for the doctors to inject the epidural into the spine and finally, if I was to deliver naturally I would have probably risked damaging the surgical area. With the first child I went into regular labour and it was at that time that they decided to call a GYN surgeon to perform the Section - I was terribly disappointed then because I had gone through all the prenatal classes and was looking forward to delivering naturally. The second child was scheduled for delivery on a specific date, however, for some reason I had started to leak amniotic fluid 1 month early - I was admitted to the antinatal unit for about 4 hours 2 weeks before the scheduled delivery date. I didn't want to be there at all and told the staff that I was going to have the baby that day. They didn't believe me and my water broke about 15 minutes after telling them my news and my labour started - my son was born within 1.5 hours. My third delivery was also scheduled. I arrived to hospital the night before the scheduled C-Section, saw visitors until visiting hours were over. Had a shower and my water broke at around 11pm - labour started and I had my emergency C-Section delivering at 12:01am.

Carrying a baby isn't that difficult although you will notice that your body definately changes and your hips will expand to allow the baby to grow. I did have difficulty with this and required anti inflamatory medication to help me with this. Low back pain was evident throughout the pregnancies but you become almost desensitized to it and learn to live with the pain. I believe that we who suffer with bad backs daily have a very high threshold for pain. My children were born very close together (18 mos. apart) which indeed had alot to do with my back deteriorating so quickly - I say if you plan to have children, ensure that you allow yourself enough time to recover and get your strength back and back muscles and stomache muscles in shape before having a second child.

Today I walk around with Robaxicet and Extra Strength Tylenol and Extra Strength Bufferin where ever I go. I take Tylenol and Bufferin daily. I use Robaxicet when needed as it's really hard on the stomache.

The surgeon I had when I was 17 was Dr. John P. Kostuik who was head of Orthopeodics at Toronto General Hospital - he moved on to be the head of the Orthopeodic Surgical Unit of the John Hopkins Hospital in Baltimore. He is now recently retired and I still communicate with him via e-mail.

The surgeon that performed the Leuke (sp) instrumentation on my thoracic spine in 2003 was Dr. Peter Stevenson of Waterloo. He was awesome! Extremely talented, very very friendly with a dry sense of humour. Very caring and sympathetic regarding my pain management throughout the ordeal. He still is extremely supportive with regard to my health and feelings. He has practiced locally for about 10 or 12 years now, not sure where he came from though but originally from England. I attended his office twice for a consultation, once in 2000 and then again in 2002. The first time I was not ready for surgery and the second time he decided that the osteoporosis and Kyphosis had advanced and there were other areas that needed to be fixed. He told me the facts straight out, told me the risks - like becoming paralysed or blind as the procedure had to be done face down on the O.R. table which would mean a surge of blood would go to my facial area possibly causing blindness.

I'm a risk taker so thought we'd go for it. My surgery was 8.5 hours long and during the S.A.R.S. epidemic which meant that I got dropped off at the hospital at 5:45am and no family members were allowed to be there for moral support - I was indeed very alone throughout the whole thing. I was in the O.R. at 8am.

I sustained comlications and blood loss to a bone. This required me to have a blood transfusion and the doctors had to stabalize the affected area. Pretty freaky but I came out of it okay.

Hope I've been able to provide you with the info you need.

[Ms. Scarlett]

more to tell you...

For Lisa...

I forgot to tell you that I know of a lady (my former boss) who was extremely disfigured due to polio and had massive scoliosis which completely and severely twisted her spine. She is the proud mother of 3 children all delivered by C-Section - she never did have a surgical procedure to correct her scoliosis. She carried her children on the right side of her body and they rested on her right hip while inside because of the way her organs were situated inside her and the way her spine was formed.