hello all =]

[megz]

Hello all =]

I am a newbie..I just recently got diagnosed with scoliosis. I have an 80 degree curve. I also have osteogenesis imperfecta..I need to undergo a spinal fusion. Just waiting for the hospital to call me with the date. Mean while I would love to hear all your stories. I really need all the prep talk I can get..I am really nervous about this surgery..If you have pictures of before and after that would be amazing to see the difference..i saw a couple on here already an am amazed at the improvement..
Take Care

xo megz

[JenniferG]

Not sure if this will work...my pics:

http://i463.photobucket.com/albums/q...dy005Small.jpg

http://i463.photobucket.com/albums/q...dy003Small.jpg

http://i463.photobucket.com/albums/q...ibodySmall.jpg

http://i463.photobucket.com/albums/q...eekspostop.jpg

[megz]

wow you look amazing!! =]
How do you feel better?!

[titaniumed]

Megz
My curve was quite similar to yours. More than likely they will fuse you down to the pelvis. My post x-ray is in my first thread.

How old are you and where are you going to be operated on? How's your pain?
Ed

[JenniferG]

wow you look amazing!! =]
How do you feel better?!

Megz, I feel great and very grateful.

[megz]

Megz
My curve was quite similar to yours. More than likely they will fuse you down to the pelvis. My post x-ray is in my first thread.

How old are you and where are you going to be operated on? How's your pain?
Ed

I am still waiting to hear back from him. It will be done in Boston. With Dr. Rand..I am 26..I am in A LOT of pain!! they wont give me any sort of heavy pain meds bc they said I will need it when I have surgery..I just recently started neurotin 3x daily..I don't seem to find it working at all!!

How was your surgery?! Was there an improvement?! How long was it?! Whats your degree now..

[megz]

Megz, I feel great and very grateful.

you are very lucky.. =] When I first found out that I would need surgery done I went online to research and I couldn't tell you how many horror stories I read..So its really nice to how well it can help.

[titaniumed]

Megz
I'm sorry to hear about your pain. This is something that some of us understand here, pain. I've been there.

How was my surgery? Oh boy, well in a few words, it was a "gift from above".

My improvement was monumental and I have no pain. I am very thankful.

I had an anterior(front) procedure first 01/29/08 then posterior(back) on 1/31/08. They went in from the front and removed the discs and installed the cages, called an anterior release, then installed my hardware from the back. They did not use any bone (allograft or autograft) they used this stuff called Bone morphogenetic protein(BMP) think of it as crazy glue for bones. It acts as a catalyst and grows bone fast. It was a long surgery, but you are out and don't feel anything till they wake you up.

My cobb angles after surgery have not been measured. By looking at them I would say that they look like about 30 degrees. When you have large curves, sometimes they cannot straighten all the way since they can pinch off nerves and that's not a good thing. The main goal is to have an outcome without pain.

In your case, having OI, they might not want to straighten all that much, due to the risk of your brittle bones. Most of the time, they usually get about a 50% correction anyway. My surgeon told me that he would make that decision after he got in there and if it was too bad that he would fuse me as I was. You don't want your curves getting worse,that's for sure.

Oh BTW welcome to the forum!

Ed

[loves to skate]

I am still waiting to hear back from him. It will be done in Boston. With Dr. Rand..I am 26..I am in A LOT of pain!! they wont give me any sort of heavy pain meds bc they said I will need it when I have surgery..I just recently started neurotin 3x daily..I don't seem to find it working at all!!

Hi Megz,

Just thought I would let you know that I think you are in very good hands with Dr. Rand. I also tried neurontin prior to my surgery and it didn't help. I am taking it now for lingering nerve pain and it does seem to help. I hope you get your date soon. Not knowing when can certainly add to your anxiety. Feel free to ask any and all questions. Everyone here is very helpful.

Sally

[megz]

Hi Megz,

Just thought I would let you know that I think you are in very good hands with Dr. Rand. I also tried neurontin prior to my surgery and it didn't help. I am taking it now for lingering nerve pain and it does seem to help. I hope you get your date soon. Not knowing when can certainly add to your anxiety. Feel free to ask any and all questions. Everyone here is very helpful.

Sally

How was your surgery with Dr. Rand?! Did you have to wait along time for your surgery apt?! I am still waiting for him to look at my CT and get back to me..I read either on this forum or another how you sometimes have to wait awhile to hear back from him..I was first refered to a Lou Jenis, but after he looked at my xrays he referred me to Dr. Rand..I just feel like I am just getting passed on to one dr to another.. I went to a pain management center in chestnut hill and they put me on neurontin. They didn't want to put me on any pain killers bc they felt that I would really need them more when I have surgery..Also they wouldnt give me an epideral injection due to the steriods decreasing my ability to heal. I really wish they could get the pain controled..Its really hard to get around with so much pain.

[megz]

Also what kinds of tests did he have you do pre op.

[loves to skate]

Hi Megz,
I understand your frustration of being passed from one Dr. to another, but you have been referred to the best in Boston for scoliosis and diseases of the spine. That is the reason you have to wait so long to see him and to get a surgery date. There are only two other adult scoliosis Doctors in Boston that I know of, one at Mass General and one at I think Brigham and Women's or maybe Beth Israel Deaconess. How they compare to Dr. Rand, I couldn't say since once I met Dr. Rand, I knew he was the one for me and I had a referral that I knew I could trust.
It took four months from the time I first saw Dr. Rand until my surgery. I'm thinking I got my date sometime near the middle of October. Sometime during that time, the date got moved up a week and then got moved up again by 3 days. The waiting is the hardest part and I was pretty much a nervous wreck the last three weeks or so. There is a relaxation CD available by Peggy Huddleston that you might look into buying. I found it to be quite helpful.

My surgery went very well, 12 hours for the posterior and 7 hours for the anterior. I spent 5 days at the Baptist, 11 days at the Coolidge House Rehab and another 5 days at the Baptist. I received excellent care at both places. The only complication I had was a head to toe rash that Dr. Rand thought was from one of the antibiotics I was given during the first surgery. I also had 8 transfusions in all and didn't donate my own blood.

At home, recovery is tough, I won't lie, but I was able to climb stairs and walk with a cane. My pain was managed with long acting oxycontin and short acting cxycondone and tylenol. I had a lot of nausea from the meds which gradually got better as I was able to wean myself off of them. I was completely off the meds by three months. Most of the orthopedic Doctors and pain management clinics in the Boston area are reluctant to prescribe oxycontin to anyone unless they are recovering from surgery, so I understand your pain dilemma. If you are working, it is really difficult when you are in pain. Have you tried water exercises or swimming? It will help to keep you in good physical condition before the surgery and will therefore help you in your recovery.

Tests - I had the MRI first before I saw Dr. Rand, then the CT/Myelogram.
For pretesting, they test you for MRSA with a nasal swab. I had blood tests, a urine analysis, bending xrays and I saw a Cardiologist for a minor heart problem. I also met with a person from anesthesia and a nurse to discuss arrangements for help at home. I think that is it. Try to get an appointment to see Dr. Rand the same day as your pretesting for any last minute questions.

I hope I have covered everything, but if you have more questions, ask away or you can PM me.

Sally

[megz]

Sally,

I start physical therapy next Tuesday so I really hope this will help out some =] Now why did they preform two operations?! How come they just didn't do it all from the back? I used to do deep water aerobics with my mom at a local ymca..maybe I should reinvest going back to that..Did they every ask you to donate your own blood? What is a bending x-ray?!

Thanks again =]

[loves to skate]

Hi Megz,

In my case, two operations were necessary to stabilize the spine. Cages were inserted in the disc spaces at L3-L4 and L4-L5 and some sort of ring at L5-S1. Because of the rotation of my spine, these spaces could not be accessed from the posterior. Also, because of my age, Dr. Rand was not able to get much of a correction. Because I told Dr. Rand that I would still like to be active and to roller skate, he said that the anterior surgery would give me a much stronger fusion than if he just did the posterior surgery with the screws and rods. Here are my xrays for you to see.




I was supposed to donate my own blood but came down with a doozie of a cold five weeks before surgery and my symptoms persisted for the entire five weeks. As a retired Medical Technologist and a blood banker where we drew autologous blood donations, I knew from experience that usually when women donate blood for their surgery, they usually go into surgery with a low red cell count and end up getting more blood than if they didn't donate.

For the bending xrays, they take xrays bending in different directions to see how flexible the spine is. From that, the Dr. can determine how much correction he might be able to get. If anyone knows more about bending xrays than this, feel free to add to this or correct what I have said.

Sally

[megz]

well sally =]

I FINALLY heard from Dr. Rands office today..I have my first appointment October 15!! Ugh seems really far away when you are in sooo much pain!! Unfortuanlty I don't see my back getting fixed until next year!! =/ I really hope some sort of miracle happens between then because this wait is gonna kill me