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megz
10-09-2009, 08:56 PM
Ok so I finally went and saw Dr. Rand On Sept 1..My appointment was for 10 They sent me down to have full x-rays taken of my back. By the time I got to see him it was probably 12:45..He spends alot of time with his patients..so his secretary assured me. He was very nice I can't complain. He told me I have TWO curves, and that I would need to be fused from the top to pelvic..So I am assuming T1-Sancrum ((sp)) He warned me I wouldn't be able to bend or be as flexible as I was now.. ((Scary!!)) He also informed me that there was no rush that he wanted me to go see other Dr.s and find out there opinion's as well. He hasn't worked on anyone with OI but he thought it may be like working with his older patients that had Osteoporosis, I felt a little discourage as I was getting shoved off, but he did let me know that he would indeed do the surgery if I wanted him too..and that he would and COULD get a correction..
OK so he wanted me to go see Dr. Emans and Dr. Shappero ((SP)) at Boston's Children. I saw Dr. Emans today..He was such a sweet old man :) haha..He looked at my X-rays and told me yes indeed I needed surgery..I have two severe curves he said the top was 90 and the bottom was 100..He sent me to x-ray to have Bending x-rays done and told me that I wansn't rigid that I had some flexiability. wooohoo haha.. Umm but heres the kicker!! He wants me to be in traction for 3-4 months and then go and have the surgery..All I can describe it as is it looks like a freakin ELECTRIC CHAIR!! I must have had a look on my face, because he just laughed and said you don't seem like this option works for you.. I was just taken back by how long and that I would not be able to do ANYTHING..I would need to quit school, which I am paying for out of pocket, and be stuck at home in this sitting contraption for 3-4 months..I don't think anyone is going to jump at that!!!

Anyy waay, he ALSO ended up referring me to see his friend Dr. Kirkham Wood at mass general..he wants me to see if he is willing to take on such a large curve..he is a child specialist, he said and that he would like for me to get an opinion with Dr. Wood and together me him and this Dr. would sit down and come with a decision.

I am just tired of this running around. I want to really get this done and over with.. Sorry I haven't updated in away..I got a couple of emails from you and thought I would hurry and update..Thank you for all your prayers and concerns =) It really means a lot to me to know I have friends out there pulling for me.

Thanks,
Meghan.

jrnyc
10-10-2009, 12:46 AM
wow meghan...didnt know your curves were so big! so glad you finally had your appt with dr rand...i remember how much trouble you had getting in...

really hope you can have the surgery without any traction stuff! i've heard of a doctor who uses traction instead of surgery, but never one who uses it before surgery......the fusion is so much to deal with, traction just sounds like it would be above & beyond...

there are so many dr rand patients on this site, surely they can advise you about what to do up there in MA....

best of luck to you
jess

titaniumed
10-10-2009, 12:43 PM
Hi Meghan

You know, I thought the same thing about having a long fusion and its not bad at all. Im fortunate that all my pain is gone, and thats the main thing.

Hang in there,the Docs will get this resolved for you soon.

Ed

megz
10-10-2009, 01:58 PM
Jess,

I didn't know my curves were that big either!! Each Dr. said something different, my orthopedic told me it was 80 degrees. Dr. Rand told me it was between 70-75, and now this Dr. Emans is telling me that they are 90 and 100?! only thing they can all agree on is that I am going to get fused from the top to bottom =/. I really don't want this traction aparatus!! Its horrible. I was reading up on it and they screw these scews into your head and every so often they tighten it with a wrench!! No way do I want that..Monday I will call and make an apt with Dr. Wood. I also have to go back to children's hospital to see Dr. Shapero at Childrens along with having a bone density test and Pulmanery function test Tuesday! Ick.

megz
10-10-2009, 02:00 PM
Hey Ed!,

Are you still able to do stuff that you used to be able to?!..The Dr. told me I would walk like I was stiff and wouldn't be able to bend side to side or touch my toes. Sounds a little scary..

JenniferG
10-10-2009, 04:16 PM
Megz, I wouldn't be too concerned about the stiffness. The idea of being a tin-soldier didn't appeal to me either, but it's not like that at all. You can bend and twist to a degree. Just getting into a car and reversing down the driveway without using rear-vision mirrors, is testament to that. Which I do every day. (The first time getting into the car, mind your head. I banged mine. It takes a while for your brain to realise your body's 2 inches longer!)

Yes, there are times you will feel stiff, but you will get round all the obstacles and life goes on - pain free, which is the main thing. In time, enough flexibility to get you through the day without hassles, returns.

Plus, you get the added benefit of looking much better in clothes.:D

In time, you won't give flexibility a second thought.

debbei
10-10-2009, 06:29 PM
Megz, ...The idea of being a tin-soldier didn't appeal to me either, but it's not like that at all. You can bend and twist to a degree.......

The thing is Megz, after a while, you get used to the new you and you don't 'feel' like a tin soldier. I don't feel that way at all. This is just the 'new me' and this 'new me' feels perfectly normal right now. I can do anything I need to do, although some things are done differntly than the ways other people do things.

loves to skate
10-12-2009, 03:29 PM
Hi Meghan,
I have been away for a few days and just got home late last night. I don't think that you are being pushed around, even though it seems that way. You have two very large curves and an unusual bone condition to go along with it that really complicates the surgery. It sounds like the Doctors you have seen really want to find a good solution for you and really want to have the opinions of other experts in their field. About the traction chair, did the Doctor explain why this would be important for you to do? Would he be able to get a better correction if you are able to stretch yourself out on this contraption first before he operates? I don't blame you for not wanting to do it. It sounds horrible. Ask your Doctors about being stretched out on a non-surgical spinal decompression machine that some Chiropractors are using? Unfortunately, insurance probably wouldn't pay for that. I really feel for you that you have to spend so much time seeing so many Doctors, but I hope you understand why it is so important in your case.
Take care, Sally

megz
10-12-2009, 07:09 PM
Hey Sally,

I can understand these Dr's are concerned, its just aggravating cuz I'm in soo much pain in the mean time. =/ Dr. Emans explained something about the traction giving a better correction, but he also mention having two surgerys as well, them first putting in the rods and getting a correction and then going in a few months later and trying to to get another correction and then fusing me then.. I almost want to opt for that instead of using this traction. I can't imagine being hooked up to this electric chair looking thing with screws inserted into my head!! YIKES! not to mention 3-4 months is a looong time! I am going back to childrens hospital tomorrow to see a specialist with OI and having a pulmanary function test..I know Dr. Emans has worked with patients that have had OI but he is a childrens specialist. He wants me to see his friend Dr. Wood at Mass General to see which Dr feels more comfortable dealing with these curves..and from there they both will sit down with me and hash something out.I am still not sure how big my curves are each Dr has given me different degrees. My orthopedic told me 80 and Dr Rand told me 70-75..So I am a little confused..I found out that my rib is rubbing on my pelvic which is causing a lot of this pain, but unfortunatly this is one of the things Dr. Emands didn't guarantee I would be rid of..On a better note they took the bending xrays and noticed that I have quite some flexability. I guess this is good sign when wanting to get a good correction.
Talk to you soon,

Meghan

titaniumed
10-12-2009, 08:00 PM
Megz

Stuff? The definition of the word stuff varies greatly from person to person. Stuff for me would include things as extreme skiing and wild motorcycling.

No, I cannot do that anymore. But thats ok, Im learning to accept the fact that I must slow down a little. I think I will be able to match my very first ski instructor who taught me back in 1962. She still skis, she is on her 85th ski season up at Gunstock in New Hampshire. That means I cant "blow a rod" for at least the next 37 seasons. LOL Ive got a long way to go.

Now as far as looking like Im stiff, that has not happened to me. If you had to pick a person with a full fusion out of a crowd, you would have trouble picking me out. I can get to about 3-4 inches from my toes bending foward. I used to be able to bend over and "palm" the floor with both hands. I think thats pretty good.

Jen and Debbe have great descriptions of activites after a full fusion. In the car, I also turn around before backing up.
I have adjusted and actually forgot what it was like before I was fused.

You have a nice set of curves no doubt, and the Docs will want to review things with one another just to play it safe. Thats a great idea, you know, If there are difficulties, I will call and ask someone of their opinion. Be patient, and understand that the Docs are not going to rush into your surgery.

Go ahead and do the "Doctor tour" for now, it just seems to be part of the program with all this medical "stuff". Accept the fact that things happen, when they happen, and for a reason.

Ed

Linda W
10-13-2009, 08:58 PM
Hi Meghan,

Through the Forum, I have met two of Dr. Kirkham Wood's patients. One was also a student in her early 20's, the other was in her 40's. Both of them had good outcomes. I saw Dr. Wood and had a surgery date with him but never felt like he and I clicked. I saw Dr. Rand as a second opinion and quickly knew he was the right surgeon for me. You will find their communication styles and bedside manner at opposite ends of the spectrum. Your job will be to decide who you will be most comfortable with doing your surgery and who has the particular experience that your situation requires. Dr. Rand is very conservative and his style is to present you with information without trying to influence your decision. There are several of Dr. Rand's patients on the Forum. We are a great support group for one another. Use us and our experience if you need to. Surgery is a huge decision -- take your time to interview the specialists that are available in the Boston area and make an informed decision.

Like you, my right rib cage was sitting on my hip causing me a lot of pain. I also had a sizable rib hump. Dr. Rand's focus was on pain reduction and he did not promise me any percentage of correction. He told me the best correction in the world would be worthless to me if I was still in pain. Post op, the intense pain down my legs that I had for many years was gone, I was 3 inches taller, my rib hump was gone and I had about a 50 percent reduction in my curvature. Not a bad outcome for someone in my age group! I am eternally grateful to Dr. Rand -- he is a talented surgeon, genuinely sincere, good listener, someone who is willing to discuss your options and work with you to develop a plan that he thinks will work best for you.

As others have shared, you adjust and learn to do things differently after surgery. Not being able to tie your sneakers by yourself is not a tragedy if you are pain free. There are ways around most of the inconveniences. I do pick things up off the floor but find it much easier to use a grabber many days. I drive forward really well, backing up takes more patience and larger mirrors. Some days, I do feel discomfort and stiffness. Like others, my worst day now is nothing like my best days before surgery when pain was constant.

All the testing you are having done will help to provide a complete picture of your status. You are fortunate that the Boston area has a number of talented surgeons who work with scoliosis patients. Good luck making your decision.

Linda W.

Vali
10-15-2009, 08:11 AM
Hi Megz,
I too had the fear of walking like the 'tin man' or 'pinocchio' but i can tell you, for me its nothing like that. As Jen, said earlier, you do have bending room within limits. I pretty much lean over my breakfast bench, just like i used to before my surgery , (sign of laziness). As for sporting, i have played netball for a long time and I thought that I could go back to playing again after recovery, but my surgeon said no due to it being a body contact sport.
Good luck with your decision making.