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titaniumed
07-23-2008, 12:07 AM
Wow, thats sounds stiff! With the past long fusion thread that was started, I was wondering if anyone out there has been fused up to T1 or higher from the sacrum? I would also like to know who has been fused T2 sacrum or pelvis like myself?

I knew a girl 26 years ago in(El Cajon,Ca 1982) that was having headaches big time, and she showed me her x-ray of her neck. It had a double rotational curve below the skull that ran down to about T2. It looked like 2 50 degree balanced curves in about 9 or 10 vertebrae. The rest of her spine was normal below T2 or T3. I lost track of her, and Im sure her whole neck was fused at some point,thats why Im not discounting the "skull-sacrum fusion'. If you are out there it would be great if you posted.

I doubt that it has ever been done but you never know.

This is about long constructs, even though Ive seen "extremely difficult" short scenarios.
Thanx
Ed

Sharshe
07-23-2008, 10:34 AM
Ouch! T2-sacrum doesn't sound nice. I'mT3-sac w/iliac fixation. I did have problems with neck but am hoping its mostly from the rest of my back, and now thats fixed I won't have anymore problems up there. If not I'd put off until they ok the disc replacements in this country. That sounds like a decent option for anywhere in the cervical area.

Theresa
07-23-2008, 12:49 PM
Ed,

I am T2 to sacrum 2 with pelvic fixation. I do have a curve in my neck as well but we are leaving that alone for now because it's not bothering me yet. Linda Racine does know of a few people who are fused all the way!

titaniumed
07-23-2008, 12:54 PM
Hi Shell
Thanx for posting. I have just started a list going of all of us who "ordered the works" you might say, and you were already on it. Once again, my question is about people that are fused up to T2 from the sacrum like myself and also up higher. I was just wondering about mobility with the arms when fused up high and also results with going all the way down to the sacrum. Is fusing down to the sacrum, the way to go? I have too many questions to list.

I searched cervical scoliosis and could not find any x-rays. I guess it is an extremely rare thing. I just couldnt imagine having my whole neck fused.

Actually, I should have started this thread in the research section.

It would be neat to have a list by various lengths. (T4-sacrum, T3-sacrum,T2-sacrum, T1-sacrum??? T1-L4???) People could find others with the same length fusions. If upon registration, there was a place to enter more specific data, like fusion lengths, and hardware info (harrington rod)etc,
date of procedure? Some one could search out all people fused 10 years ago?

Having better search parameters would be beneficial to everyone.

Just an idea?


Ed

titaniumed
07-23-2008, 01:36 PM
Theresa, gotcha, Ultimatly what Id like to do would be to get an RV and travel. Since the RV would solve any sleeping problems due to unfamiliar beds in hotels, I could visit with some of you as I cross the country. After all, it is our disease. Maybe I could be of some benefit for research.

I went through my surgeries with a wiped out shoulder. I will address this with my surgeon at my 6 month appointment coming up on Aug 8th. If I need rotator cuff surgery, It will probably be next spring before I start travelling.

Sharshe
07-23-2008, 02:13 PM
Sounds like you've been through the wringer and back

titaniumed
07-23-2008, 02:34 PM
Im going on my 4th surgery in 15 months. I passed a 7.5mm kidney stone in May 2007 and well, that was like parking a pickup truck on my stomach. Had a laser lithotripsy to remove the stone. Tough issues for a guy.

For intensity of pain, it bypassed my scoli surgeries. I bent the railing on the bed with my right arm.

No more coffee,soda or tea. I drink lotsa water!!! Have to watch the color of my urine, it tells you quite a bit as far as renal function is concerned.

Women who have had babys naturally without drugs that have passed stones, rate the pain 1-5 times greater than childbirth.

So ladies, been there done that!

Ed

Pooka1
07-23-2008, 04:47 PM
Women who have had babys naturally without drugs that have passed stones, rate the pain 1-5 times greater than childbirth.

Might I ask how long your stone pain lasted?

titaniumed
07-23-2008, 08:20 PM
I was at work and realized that I couldnt pee. Guys have a on,off switch and once it is turned on, its impossible to shut it off. My switch was on and I couldnt turn it off and nothing was happening. As dry as a well in Alice Springs, Austrailia. About 1 hour later, the pressure built up and had to be driven to the hospital very quickly. They took me right away, and thats when the fun began. Foleys largest invention was revealed, and put to the test! Thats when I bent the railing on the bed. After I bent the railing, nothing came out. The bladder scan revealed just about nothing, The pressure was incredible for about 5 hours, then that 7.5mm stone pushed down the ureter, which is approx 2mm I.D. and stopped short of the bladder. That took about 10 minutes, and thats when I saw God. It was kinda like swallowing a baseball. After it pushed down approx 12 inches, and a Ct scan confirmed it, they injected me with something and after that drug wore off, the pain was gone. I slept about 30 hours after. The Dr shook his head in disbelief. I was close to emergency surgery.

5hrs and 10 minutes with the Lord

acubfan
07-23-2008, 09:43 PM
Hello everyone! I was originally fused from T4-L4 at my first surgery but my un-even shoulders were still a problem. The right shoulder was 2 inches higher than the left. So my second surgery they decided to extend it from T2-sacrum to hopefully help level out my shoulders which it did very little. I was told at the time that they don't like to fuse any higher than T2. During my third surgery I told the surgeon that a screw on the R side of T12 was bothering me so he said he would remove it and revise my lumbar spine b/c it failed to fuse 3 months earlier with A&P surgery. To me and my families surprise when I woke up with no permission or knowledge the surgeon decided to remove my rods from T2-T11 (I had just been extended 2 levels only 3 months prior so there is no way it could have fused in that period of time). This has caused lots of problems since then especially in my cervical and upper thoracic spine. My thoracic spine was never fused straight to begin with and now that I have no rods in my t-spine my cervical spine is curved and is a mess, it has a scoli curve and a hyperlordotic curve from the side. When I stand my cervical spine sticks way out in front of my sacrum, my shoulders aren't level. So needless to say I am now seeking a new surgeon who can hopefully go in and put my thoracic rods back in which should help my neck tremendously and help with my function, range of motion, pain, and daily headaches. I felt great when my rods were in from T2-sacrum. I had my 1st surgery in 2002 and then 2,3,4 were all done within less than a years time-frame which resulted in lots of extra problems that I didn't have previously (sick thyroid, anemia, copper deficiency, sores on my tongue for several months, and also an equinovarus contracture of my R foot from L5-S1 nerve damage) Has anyone had a similar experience? Just thought I would share my experience.

Amanda

4 spine surgeries
1st surgery- Dr. Keith Bridwell, St. Louis MO.
2,3,4 th surgery- Dr. Lloyd Hey, Duke NC.

2 foot surgeries as a result of nerve damage to L5-S1 :eek:
Dr. S, MetroHealth Cleveland OH.

Suzy
07-23-2008, 11:40 PM
Hi Ed,

One of my scloi friends here in Sac is fused T1 to S1. I must say she has the best posture! She is about 7 months out.

I couldn't believe the kidney stone story! I would have bent the bed rail with the Dr's head!! WTH took them so long?? You are quite the man.

titaniumed
07-24-2008, 02:41 AM
Suzy
No, no ,no, there was no fault in what the Dr or Hospital did. People pass stones all the time. Some people pass them every day, and quite a few "tough them out" at home alone if you can believe it, and they can kill you. They are calcium crystals that form from filtering the blood, and can be quite small to pretty large and result mainly from dehydration. This is only one reason, why water is so important, to dilute the urine that is formed during the filtration process.

I am absolutely amazed with the quality and technical expertise of our Doctors and nursing staff at St Mary's Hospital up here in Reno. I did go down to thank them for saving my life after my stone experience and also after my scoli surgery. I greatly appreciate them for doing such a great job. The nurses were glad I came down to thank them after since they never know what happens to their patients after they leave. I can relate, its nice to see the byproduct of ones work.

There are plenty of renal sites online that will explain why stones occur and how to deal with them. kidney,gall,bladder etc. You are a diver, well they have "staghorn" stones just like the staghorn corals we see in the ocean, only golfball size!!

I would like to meet you and your T1-S1 friend, Im coming down the hill soon,
I will e-mail you soon.
Ed