My biggest fears: pain and inches

[juliemar]

This is the first time I have read through info from other scoliosis sugery folk. I have avoided it until now--denial is a powerful thing! I am six days away from surgery so I think its all becoming more real.

I am having an anterior release to fuse T9-L3 (I think I have the jargon right). I have been through the risks, etc over and over. At this point, my biggest anxiety booster is the post operative pain. Any words of wisdom or encouragement?

My biggest vanity concern is the potential increase in height. I am about six feet tall and love wearing heels. Somehow, though, the possibility of 6'2" seems shockingly and intolerably huge. How much difference did people really experience? My husband is 6'3" so, luckily, I have a little room to sprout up!

[berta@aloha.net]

Would LOVE 2 "

Well, it's the opposite for me! I HOPE to gain those 2 inches, to make up for the gradual loss of them over the last few years that my curves have progressed. But I went from 5'5" to 5'2 1/2", so that' why I guess. Maybe they could not let your height increase by the way they do it, such as take out vertebrae and not fill in with as much bone graft? But I don't really know if that's possible.
I'm going to get fused from about the same vertebrae as you. What are your degree curves?

[Marcia]

I can relate to your fears....I'm about a week behind you for surgery. I just wanted to wish you a successful surgery with great pain management. As for the height, I'm like Julie. I am hoping and praying for at least the 3 inches I have lost over the past 10 years or so. Just being 5'4 again is my goal!

[summer]

With the right amount of painkillers I had very little post op pain. I remember feeling stiff, achy and exhausted. I gained only one inch in height I think it depends on the degree of your curves. Best of luck to you

[Cakedec]

They manage it well

I woke up quite comfortable directly after my posterior spinal fusion almost 8 weeks ago. The morphine pump managed it very well. If you are uncomfortable, they can give you an extra boost of something (forgot the name of it, starts with a d) through your iv. My main challenge was once they get you off the pain pump and want you to just have oral meds and morphine pain injection when needed. Sometimes it takes some trial and error to find out what medicine will work for you.

They really want you to get up and move around once you're off the i.v. and that is when you will feel the pain in your body as you move. But be persistant while in the hospital and let them know if meds aren't working. I had to have a shot of something the first week every time physical or occupational therapy came in to work with me or it was too much. Of course, you don't want to take the real strong stuff unless you really need it because it is addictive and then you have to gradually taper off it later or go through withdrawal. Ask about the meds they are giving you to go home with. But every person is different; most people do fine. We women are a tough bunch. Don't let your imagination get you spooked worrying about the pain; the surgery is worth it and they will manage it just fine.

I gained 1 1/2 inches--about what I had lost from my progressing curves of T70,L76. People even notice that little bit because you are now on a different angle for them to look at.

Deb

[Singer]

I can understand your pain-related fear, as I have it myself. However, I can't relate at all to your fear of height -- I used to be almost five feet tall and am now a beyond-petite just-under four-ten!!! Here's hoping I won't shrink anymore by June.....

[bbest]

Deb - the one that starts with a "D"...Dilaudid. I will never forget that name as it did absolute wonders for me.

Julie - Welcome to the forum. Don't worry too much about the pain, as the hospital staff will work with you to find a medication or combination of medications that will work for you. I wish you all the best for a successful surgery.

Brandi

[juliemar]

Next question: visitors

Thanks for the replies. I am clinging to Deb's report of feeling "quite comfortable" upon waking up. And you are absolutely right, Deb, my imagination about the pain is certainly running strong. Thanks for the reality checks and I will keep the "starts with d" medication in mind.

Berta, my curve is at 58 degrees and C-shape to the right--what is yours?

Marcia--how are you holding out as the countdown continues? Have you been waiting long for the surgery? It seems that lots of people have them scheduled way in the future. Once I made the decision to go ahead, the surgery was scheduled for less than three weeks out. It has been a very quick process.

I am also wondering thoughts on when I will want visitors in the hospital? What day will I be able to be social and carry on lucid conversations?

T minus five days... Yikes!!!!

Julie (Denver, Co)

[macky]

Hi Julie and Marcia, I just want to give you encouragement and let you know I will be thinking and praying for you both.
As far as post op pain goes I do know from my scoliosis operation and others I have had, that the nurses and doctors do not allow patients to be in pain. It is their aim to have you comfortable and pain free and that will happen so please do not worry.
It is a huge thing I know but honestly I have never regretted having my operation. I grew 2 and a half inches and Julie my curve as you can see was a lot more than yours. You probably wont grow as much as you think and honey if you do it doesnt really matter does it. You sound happily married and as long as you are well again that really is the important thing.
My thoughts and prayers are with you both,

Macky

[Cakedec]

Visitors

Dear JUliemar,

You asked about visitors. Other than brief visits with your husband/close family members, you probably won't want extra visitors for the first 4-5 days. The first few days you sleep so much on and off that even if they come, you might doze off on them. I had some visitors come 2 days post-op and I never even knew they were there; they left me notes saying that they had stopped by and I was sleeping! By day 5 or 6 it is nice to have some company for short visits, but even an hour is almost too much to concentrate on them with the meds you are on.

Visiting with friends by telephone in the hospital is nice because you can keep the conversations short and it doesn't require as much energy or focus on them. (Assuming the phone is close enough for you to reach). Mine kept getting knocked on the floor!

The visitors I really enjoyed were after I had been home for a week because I could sit up in a chair or walk a little bit and they were amazed how well I looked, you can show off your straight back, etc.

You will get lots of get well cards and they are very good for boosting the spirits and you can look at them while lying in bed for encouragement. There really isn't much space in the hospital rooms for flowers or plants; I kept sending mine home with family to take care of.

Hope that helps.


Deb

[Jen-jen]

I know exactly how you feel when you say that 6ft 2 sounds huge. I'm 6ft myself and I don't fancy becoming 6ft 2 either because I wear heels a lot and I already tower over people as it is!! Just say that you're tall like models are... that's what I say!

[berta@aloha.net]

Pain!

Julie, my degree curve has yet to be confirmed, 2 opinions. How can that be anyway, but so far it's true with me. Maybe 2 different days, 2 x-ray labs, whatever! I'm about 50 upper and 60 to 70+ lower or so. My lower is the one causing me the pinched nerve and it's rotated 4+ too, so it's pretty out there.

Anyway, there's this kind of nagging pain thing and it's SO different than the surgery pain. I have not had my scoliosis surgery yet, BUT I've had open heart, (my mitral valve broke) and so I have experienced waking up having just had my chest bone cut from top to bottom and metal twist ties inserted to put me back together. One time I woke up and the meds had worn off and I could not move at all and I could not believe the pain in my chest bone. But as soon as I let the nurses know, and they up'd my drip, it was gone. I never waited again!
Like everyone is saying here, just make sure you get the meds. Maybe because of this surgery and childbirth, the pain part does not scare me. It's bearable, and since you can just push that button, (and don't wait too long!) you can sleep thru most of it!
Don't worry, you can do it! Just remind yourself of the new back you will have whenever you worry or feel the pain.
Good luck and let us know as soon as you can, all your experiences!
Berta

[sweetness514]

Hi Juliemar,

myself I did have a lot of pain with my first surgery, what happened was the Morphine didn't do much for me and it took a couple of days of trying many other meds before I could be "comfortable", and so know this so you can ask for other meds-for me it was Codeine that helped. Also, I had another surgery this last year, and this time it's a new procedure that I think a lot of newer scoliosis patients get, it's an epidural cathetrar that they place in your spine before surgery and it really numbed the pain a LOT, wich was such a difference from the first time, truly a Godsend. That's why I think a lot of people that I have talked to who got surgery lately say that they didn't have that much pain compared to the ones that had surgery years ago.

I gained about an inch, and the fact that you will have posterior only and not that big of a fusion will not make you gain that much more, from the info I have gathered.

[LindaRacine]

Hi Juliemar...

If, during the anterior release stage, only morselized bone graft is used between vertebrae, you shouldn't gain much height. (You'll gain some from straightening the curve(s), but lose some from loss of the discs.) However, if cages or bone discs are used, you could gain quite a bit (depending on the number of discs involved).

Regards,
Linda

[Shari]

Hi Julie,

We all have different experiences, concerns and fears. I wanted to be taller, I had 5 discs removed and replaced with the crushed up bone, but it didn't happen after they straightened my spine as best they could.

At first the height, that I didn't gain bothered me. As it may, if you gain it. But, I realized that being taller or shorter was not my main concern. It eventually turned out to be that I was free of my pre-op pain. I found that to be the most important thing.

It doesn't matter what kind of hospital experience you have, they have good drugs to get you through it. All you have to do is ask!!! Keep a positive attitude.

If anyone was to ask me about my hospital stay, I could tell tell them almost everything that happened to me, to this day, but the pain is not part of my memory. It's amazing how it goes away!!!

Shari