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mariposateach
02-05-2011, 11:04 PM
Hi everyone,
I've been reading this forum for almost a year now. I have followed many of you through your pre and post op ups and downs. I have learned so much from all of your posts and threads. Well, I finally decided to register in the forum and join all of you in the conversation, especially since my day is looming near.
Here is my story:
My name is Cathy. I'm a 58 year old elementary school teacher, wife, mother and pretty active gal. I was diagnosed with scoliosis when I was 12 years old - had a 42 degree curve at that time - we chose not to correct it at that time. My older sister had just gone through the whole ordeal (full body cast, this was back in the 60 s) and my family just couldn't handle it again. I always ignored it and just went on with my life. I ski, bike, hike, go to Jazzercise and work with busy 8 year olds at school, which I love. But about 8 years ago I started noticing the pain and it eventually started to slow me down. So, I started the process of seeing many doctors - my xrays showed my curve had progressed to 70 degrees.
My surgeries are scheduled for March 15 (anterior) and 17 (posterior) at UCSF. I mostly feel a sense of peace and calm now that it's getting so close. I really feel like I am prepared for what is ahead of me - reading this forum has educated me more than anything else.
I am hoping to return to teaching in the fall - is that too hopeful for an old(ish) gal like me?
Any advise any of you can offer will be appreciated.

Cathy
California - Sierra Mountains
70 degree curve
Surgery - March 15 and 17 -
UCSF - Dr. V. Deviren

JenniferG
02-06-2011, 12:23 AM
Hi Cathy,

Welcome to the forum. So glad you've already got a lot from it, as I think we all do. Your story is similar to mine. Diagnosed at 13, ignored it, lived full and active life, but pain started at around age 50. I had my surgery a few weeks short of age 58 and it was the best thing I ever did. My surgery was posterior only. I had a 68 degree thoracic curve, now 22 and almost unnoticeable. I felt fine at 3 months, could probably have returned to an easy job, but teaching 8 y.o.s? Probably not until around 6 months. So I think you have a good chance of meeting your time-line. I'm almost 2 years post op and it's like having a new life.

jeneemohler
02-06-2011, 11:32 AM
Welcome, Cathy! I'm glad you have gotten help over the last year from everyone here on the forum. It has been priceless for me. Keep in touch, as we like to encourage our fellow members when they go through the process before and after the surgery.

golfnut
02-06-2011, 12:18 PM
Welcome, Cathy! You shouldn't have waited so long! Our stories are really similar. My curve was around 40 degrees in high school, but it didn't bother me and I was active until the day of my surgery. Pain wasn't a factor at the time, but it was increasing and I was shrinking. I could barely push my finger between my ribs and my hip bones. Now, I could probably put a whole fist.
I retired from 33 years of teaching 2nd grade and kindergarten in 2005 and substituted the past 5 years. It is nice not having the pressure of returning to a full time job. My surgery was one month from yesterday and I'm doing really well! As soon as the weather here in Illinois improves, I'll get out more. Definitely, the most stressful time is pre-surgery.

ADMoul
02-06-2011, 02:48 PM
Another chiming in with a similar story. Diagnosed at 14, did nothing about it and pretty much lived my life up until about age 50 when chronic pain set in. I teach strings to 3rd graders and 7th-8th graders, travel around to different bldgs, carrying instruments, etc. Had my surgery in early Feb. and was fine going back to work in Sept. Could have probably gone sooner and actually sang choral concerts (on my feet for better part of 2 hours) at the end of April. Minimal issues with recovery and I agree with whoever said it was one of the best things they ever did. As you can see from my signature, my curves were severe and are still pretty significant, but the pain is gone and I feel and look so much better. Don't know that I would have found my Dr. and gone through it all without the support of this forum. Best of luck to you!

jrnyc
02-06-2011, 03:14 PM
happy one year anniversary, Anne!

jess...and Sparky, who has a bday on your anniversary date...

http://i1085.photobucket.com/albums/j439/jrrnyc/pillow2.jpg

Doodles
02-06-2011, 07:41 PM
Cathy--
It is amazing how so many of us were having parallel lives! Your story sounds much like mine too. I retired from teaching the year before my surgery so thankfully didn't have to worry about that. Maybe that makes me think I couldn't have returned that soon since I didn't have too! Personally, I don't think I could have returned to teaching 8th grade the next fall. At more than a year I did some volunteering and some subbing. It was exhausting for me--I may have just been out of shape for that kind of stuff even though I had done lots of physical exercising. Everyone seems to have very unique recoveries. Welcome to the forum & very best of luck to you! Janet

mariposateach
02-06-2011, 10:05 PM
Wow, so many of us with similar stories! It is reassuring to hear from all of you. I am encouraged from your comments. I know that my recovery is hard to predict and that I will just have to give it time and see how it goes. Honestly, at this point I just want to get this surgery over with and get to "the other side".
New question...
How long was everyone in the hospital after surgery? Did you go to rehab or go home? My doctor estimates 5 to 7 days in the hospital and a possibility of 10 more days in a rehab enter.
Cathy

Doodles
02-07-2011, 01:55 AM
I was in the hospital 8 days and then rehab for another 8 days. Janet

titaniumed
02-07-2011, 07:19 PM
Cathy

I spent 10 days, then pretty much ran out with hoses attached! That wasn’t a great idea because I had to wean to orals at home, and that’s rough. I would recommend participating in rehab due to this reason.

Do you know which levels will be fused? and where your anterior will be?

Also, how is your sister doing after all the years?

Welcome to the forum
Ed

golfnut
02-07-2011, 09:14 PM
I was in the hospital for one week. I thought that rehab. Would be good for me and make life easier for my husband, however I was told that I did not qualify for rehab. I actually did fine at home.

mariposateach
02-07-2011, 09:34 PM
Thank you for the responses regarding time in the hospital/rehab. It sounds like 7 days is probably the minimum. It also sounds like rehab is a good thing. Since I live four hours away from my surgery hospital in San Francisco, going to rehab would be best, just in case I need something. As I understand, it's up to the PT to determine if I go home or go to rehab.

Ed,
My anterior is T12 to L5
Posterior is T2 to pelvis

Thanks for asking about my sister. She has done very well - her back was not straightened, just fused, but she did not progress any further from her 45 degree curve and she has never had any pain. She is an active grandma of five and can hold a toddler on her hip while cooking dinner. Her daughter, however, also had scoliosis. She had surgery in the 80s with a Harrington Rod installed. Now at age 36 she is in pain.

So., what's with the foam topper? I have a comfy mattress - does a foam topper really make a big difference? Any other "must-haves" you would like to recommend to help once I get home?
I watched your skiing video - very impressive through all of that powder.

titaniumed
02-07-2011, 10:47 PM
Cathy

Yes, PT will decide when you can leave. It depends on weather you win the wheelchair race or not! LOL

I can’t say enough good things about UCSF. I was there last summer at the scoli meeting and everyone was just fantastic. Its nice to know that there are so many experts in every branch of medicine there. Your in good hands.

I feel the foam is necessary. My shoulder was broken at the time, (stuff happens) and the foam increased my sleep time substantially. The bandages can be annoying to lay on, and the foam makes it so much easier since sleeping is so hard after surgery. Latex foam, 2-4 inches thick. Get plenty of SOFT down pillows. They need to be soft so you can mold them easily. I would almost recommend running them over with the car about 50 times to make sure they are super soft! The bed should be dead flat, not hammocked. It it sags 1 inch in the center, its hammocked, you will feel it. I have a medium Tempurpedic and it wasn’t soft enough.

I also would recommend 2 bottles of Magnesium Citrate. It's sold over the counter, and is your “heavy artillery” in case you need to break up the dam. Opoid constipation happens to all of us, and can happen going every day, and is one of the most painful events that can happen in your recovery. I was told “NO X-LAX” Think of it as your fire extinguisher.

Other than these items above, a good support team to help you with things. Someone who can get the other things that you forget from Linda’s list
http://www.scoliosislinks.com/PreparingforSurgery.htm

Ed

lray
02-09-2011, 06:04 PM
Hi Cathy! Welcome to the forum. Congratulations on making the very brave decision...that's the tough part, deciding on whether or not to have the surgery after weighing all the pros and cons. Your story is very similar to mine and many others here. Seems like around age 50 the curve(s) and pain start to accelerate for some of us.

The memory foam mattress topper, recommended by Ed, was about the best suggestion I received here on the forum! I purchased it at Costco and it wasn't very expensive. (I still see them there.) I'm so glad that I have it.

You are having surgery by one of the best scoli surgeons. You are in excellent hands.

Just wondering, how far do you live from Yosemite?

mariposateach
02-10-2011, 02:28 PM
Thanks Lauri for the encouragement about Dr. D - I really do feel very confident about him and UCSF. I will be picking up a foam topper from Costco this weekend!
I live in the mountains outside of Yosemite - my husband works up there and we used to live in the park. It is a very special place to us.

Does anyone have any insight or advise about having visitors at the hospital during and soon after surgery? I am blessed to have some friends and family who want to drive a long distance to come visit - should I discourage them from coming the first five days or so? - am I going to a complete wreck? My husband and daughter will be there, but should the others wait? I would assume it would be good for my spirits to have visitors eventually, but I'm not sure when I should tell them to come.
Thanks! I am leanting so much from all of you!

Doodles
02-10-2011, 07:38 PM
Personally, I only wanted my husband there. A couple people did come but it was just sort of a dream to me. I was too out of it to really know much or remember it. In rehab my daughter and sister were there for a while and that was fine. But just for friends to show up, I was glad I was too far away for that. You don't feel up to it, but that was just me. Some may be fine with it. I didn't even watch tv, read, or anything. You're too medicated to know what's going on. Janet

jeneemohler
02-10-2011, 09:04 PM
Ditto for me. I am very friendly, and was hoping my friends and family would be there so I wouldn't be bored all week. But it was pretty hazy for me. I don't remember anything of the first 2 days. Just dreamlike memories of my husband and parents and best friend being there. We didn't have a lot of conversation, but it was nice just knowing they were there, and I didn't need to put on my "happy to have visitors" face on. I could be myself. I remember some people being there earlier, but not anything that was said. However, I was very comforted when my husband was there and stayed a few nights with me.
So I wouldn't recommend someone driving a long ways to see you. Better to visit you when you get home. You need to sleep as much as you can. Having surgery is hard work and it wears you out! You are under anesthesia for a long time, and it takes time to get it out of your system. And you won't get much sleep with all the vitals checks and medications, etc going on day and night. You just want to rest and catch some sleep! I took my cell phone, and never had the desire to talk to anyone. It rang a couple times, and to be honest, I didn't want to answer it-so I didn't. No one but you guys know that now!!!! No telling....

titaniumed
02-10-2011, 09:22 PM
Cathy

That is a great question! Some like to have many visitors, I myself, told everyone to leave me be......

Why? because after you get done with your surgeries, you are going to be zonked from the extremely powerful meds they use. The lights will be on, but nobody will be home. I just didn’t want anyone to see me that way.....They kept me in intensive care for a few days.

I would say, allow your husband and daughter for the first week and others after 5-7 days. You should make that call, only when YOU are ready. They should understand.

Most hospitals do not want kids under 16 coming down for visits.
I think its justifiable.

I'm glad Janet and Jenee posted and will ditto them. I had no desire to watch tv in the hospital, and I thought it was just me.

My cell phone was used just once. I called for a ride home, and was asked what car should be used. I said, “bring the pick-up truck, and throw me in the back”.
Ed

lray
02-12-2011, 02:38 PM
Cathy, I tend to agree with the others about visitors. I, too, did not desire any visitors except for my husband. I was pretty out of it for the first few days, plus I didn't feel very attractive with all my IVs, unwashed hair, etc. Many friends wanted to come see me but I asked them to wait until I got home and was more comfortable and "normal looking."