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/qq356/topsi_photos/scolibody005Small.jpg

http://i463.photobucket.com/albums/qq356/topsi_photos/scolibody003Small.jpg

http://i463.photobucket.com/albums/qq356/topsi_photos/ScolibodySmall.jpg

http://i463.photobucket.com/albums/qq356/topsi_photos/scoliback11weekspostop.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!! :eek: 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.:D

[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!! :eek: 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.
476

477

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:eek:

[loves to skate]

Hi Megz,
Is October 15th the first time ever for you to see Dr. Rand? Did Dr. Jenis set up the appointment for you? The Autumn seems to be a very busy time for Dr. Rand. He usually takes a vacation in late August/early September and combines it with the Scoliosis Research Society's meeting in September, so I think a lot of appointments get backed up then. I just called for my almost two year appointment and wanted September. No luck. My appointment is the week after yours in October. If you have never met Dr. Rand, I think that you will probably love him. He is very kind and compassionate and very thorough. I'm really sorry you have to wait so long.:(
How is the physical therapy going? That should kill a lot of time and help to make your body stronger. Will you have someone to help you recover from the surgery? You will be in my thoughts and prayers.
Sally

[megz]

Hi Sally

Sorry I haven't replied =] I start physical therapy tomorrow!..Lets hope that this will help out with the pain. Yep October 15 will be my first appointment with Dr. Rand. No Jenis only referred me..he never set up the appointment..I have to call Dr. Rand office and wait to hear from them when he looked over my CT..Once he saw my CT his secretary called and gave me the date for Oct. 15..I have no doubt he will be a pleasant doctor..I just wish he wasn't soo booked =/ This pain is unbearable some days..Its hard for me to just get out of bed..After surgery my mom will help me out..plus I like with my roommates so I sure I can call on them ha ha =] I'll have to get myself a bell or something hehehe:p
Thank you for all your kind thoughts..
xo megz

[RitaR]

Hello Megz,
I, too, can sympathize with your pain. I have tons of pain. And, I have these muscle spasms-like going around my side to the front. At times I can hardly walk until it passes. Having surgery can't hurt much worse than this, is what I keep thinking. My days - some are worse tahn others. Tonight is rather bad, but I just got done cooking dinner - time out of my chair and on my feet, mornings and evenings, are the worst.
Keep plugging away - We'll sympathize with each other. I have 80+ degree curve and appointment with Dr. Lenke Aug 19th. Wow - still long ways off!

[titaniumed]

Megz

You mentioned that you were just recently diagnosed with scoliosis. You never had an x-ray done of your spine through the years? With having an 80 degree curve, you must have had pain through the years? When were you dxd with OI?

Sorry about all the questions but I was wondering how you made it so long (age 26) without knowing? You must have a rib hump, or lower spinal hump, did you notice? I take it that there was no school screening?

It might not be a bad idea to call Dr Rands office and explain that your pain is bad, and could they call you if there is a cancellation. Cancellations happen often, and there is a good chance of this happening. Same for you Rita.

I waited 34 years for my surgery. That was a long time, and I used all sorts of techniques for pain control. It might not be a bad idea to go and get a good massage. I found that if I spent 30 minutes in hot water, the massage was more beneficial. A good masseuse will push and apply pressure to counter your curves, and it feels great.

How was the PT?
Ed

[megz]

hey ed

Nope, never did my orthopedic ever take pictures of my spine..whenever I went to the hospital it was always my femur or timbia rarely an arm here or there..I was always back pain free..School had screenings but for some reason I was always exempted..When I went to the pain managment center..they were really shocked that I let it get to 80 degrees..but honestly, I was never in that much pain..I may have been in some discomfort a few years back, but surgury was never an option then for me.. I do have some disformity in my back and I had learned to deal with it by wearing baggier shirts..I have always been self concience of myself.. But I honestly just thought it was because I had OI..It wasn't until this past April I got tired in being in constant pain and decided I NEEDED something to be done..I booked an apt with my Ortho and he took an x-ray of my lower back..Thats when he determind I had an 80 degree curve..He didn't seem too concerned and told me to follow up with this lou Jennins..I waited months an never heard anything from him I called every other day, finally a month ago he told me that this was to big of a curve for him to deal with and referred me over to Dr. Rand..He got back to me a week later and gave me the date for October 15..I went to PT today and he just did the basic examination..He did a little massage trying to figure out where the pain and stuff was..It feel great when he was massaging the area!! haha
He wants me to go 3x a week for 2 weeks in the pool and then the next two weeks 2 x in the pool and 1x on land.. He wants to do alot of pilates stretches and stuff..but I like your idea of the massages better!!!

[megz]

Hello Megz,
I, too, can sympathize with your pain. I have tons of pain. And, I have these muscle spasms-like going around my side to the front. At times I can hardly walk until it passes. Having surgery can't hurt much worse than this, is what I keep thinking. My days - some are worse tahn others. Tonight is rather bad, but I just got done cooking dinner - time out of my chair and on my feet, mornings and evenings, are the worst.
Keep plugging away - We'll sympathize with each other. I have 80+ degree curve and appointment with Dr. Lenke Aug 19th. Wow - still long ways off!

Rita =]
I have the pain right under my ribs on the right side..my side sort of goes in due to the scoliosis..I can only keep telling myself it will get better..I have those same days..If I am out for a long time and EXSPECIALLY if I am walking around all day loonnng..Its the worst!! I hear ya I have mine the 15th of October and It seems forever!! Do you go to PT..I had my initial appointment today. It seems like it may work. I'll be going in a 95 degree pool 3 times a week for 2 weeks and then 2x times a week and one time with my pt for another two weeks..anything to help with the pain =]
Where is Dr. Lenke?! Do you have any deformity due to your scoliosis? Where you ever diagnoised as a kid?

[titaniumed]

Wow! I find it hard to believe that an orthopedic didn't see, or suspect your scoli, and didn't even take an x-ray.......

This is why x-rays are absolutely necessary with scoliosis...... There is NO debate here.........

The pool will help. If it works, ask to go every day. Tell him you need massages to control your pain.

Massage is a very simple solution and is not asking too much.

I'm speechless, all I can say is "wow"

wow
Ed

[theizzard]

Hi, I am also one of Dr. Rand's patients and I am very pleased with my results and with him. He can appear to be rather detached but he isn't. My suggestion for pain is to go to your gp for pain management. That is what I did and have been doing for sometime. I can tell you that Dr. Rand would not want you to be suffering with pain. He will do everything he can to manage your pain after surgery and there is no reason you should be suffering like this now. Try your gp. They have very powerful drugs to help you during surgery and after, so you should not have to suffer so now. My first appointment with him was November and my surgery was in the middle of February. I also suggest calling at least weekly to find out if they have any earlier cancellations. Good luck with your appointment and with your surgery when you have it and please find a good gp to get some pain meds from. You don't deserve to suffer.
avis

[CHRIS WBS]

With having an 80 degree curve, you must have had pain through the years? Ed

Not necessarily. Ed, I went pain free for years despite a large progressive curve. My problems first surfaced four years ago at age 56. That’s when I learned I had a 75 degree curve. Even though surgery certainly would have been easier on me even 10 years ago, I’m not sure anyone could have convinced me to go through with it when I was having no pain whatsoever.

[titaniumed]

Chris

When were you dxd? I find it hard to believe that nobody notices 80 degree curves, pain or not. There has to be "some sort" of indicator, something, that either the patient notices, or at least someone at the hospital picks up on.

The fact that these things happen, should trigger a mandatory x-ray for everyone. Age 10, 15, 20. or some sort of frequency. X-rays are so easy, and at least would give a heads up on things.

We go to scoli meetings down in Sacramento, and I can tell who is fused, and who isn't from 300yards!!!! LOL

I mentioned this to Suzy, and we were both picking everyone out, guessing cobb angles all in good fun.

Ed

[theizzard]

I didn't know I had scoliosis until I was 40 years old. Either I didn't have it until then or it just wasn't bad. I had back surgery when I was 35 and not a word about scoliosis was mentioned. It began to rear it's ugly curvy head in my fifties and I had surgery in February at the age of 58.
avis

[Jo 71-09]

Hi Megz,
I am a patient of Dr Rand's as well. I am sorry to hear that you are in so much pain and that you have to wait so long. Four months seems like forever when you are in pain. I hope the PT helps until you can get in to see Dr Rand. The others have given you several great suggestions that should help get you through a little more comfortably.

I would like to add that I found accupuncture to be very helpful in managing my pain before surgery, and that I spent my waiting time reading as much as I could about the surgery here on the forum and in books. The NSF store has several good selections. I bought David Wolpert's Scoliosis Surgery, The Definitive Patient's Reference and found it to be very informative. I also used the book and tape that Sally suggested by Peggy Huddleston.

Take care.

[CHRIS WBS]

Chris

When were you dxd?
Ed


I diagnosed myself when I was around 15. At the time I remember reading about Isabella Rosellini and her scoliosis and wondering if my being a twin like her had anything to do with it. There were no school screenings where I went to school; and the family doctor, while he made house calls back then, never checked spines. When I was around 20 I saw an orthopedic surgeon out of cosmetic concerns who told me nothing could be done. Considering the success rate for scoliois surgery back then, I’m glad he did. One of the surgeons with whom I consulted told me that had I been surgically treated years ago, I most certainly would have required a revision by now. Over the years, doctors that I saw never made a big deal about my scoliois, maybe because I never complained about being in pain.