Waiting to be Scheduled

[bbest]

Hello All -

I saw my surgeon today and he explained my upcoming surgery to me in detail. I will be fused from L1 to sacrum. I will also have a lumbar decompression done to relieve the pain caused by spinal stenosis. He will do an combined anterior/posterior approach and graft bone from my pelvis. Would appreciate feedback from others who have been there and done that.

Thanks,
Brandi

[Shari]

Hi Brandi,

I just thought I would welcome you. I can't give you any feedback because I'm T-3 to L-5, but I'm quite sure someone here can and will.

Shari

[cwhite]

Hi - I haven't been fused down that far either, I was T6 - L3 and am 4 weeks post surgery tomorrow. What I can tell you is that for me, since I was fused down to my lumbar region, I am required to wear a brace for 3-6 months. Right now I'm required to wear it 23 hours a day, I'm hoping that I will start to phase out of it in a few weeks. I would think you'll have to wear a brace as well, though everyone's case seems to be unique. I will say this, although not unbearable, the bone graft from my pelvis caused more soreness then the fusion. At week 4, the swelling and numbness is just about gone from my pelvis incision, I've been off of all meds including tylenol for a week now! I will suggest you build up your leg and arm strength as they will be put to use in moving and lifting yourself out of bed...no bending! Best of luck!

~CWhite

[lelc2002@yahoo]

Brandi,
I, too, will go for the surgery this August so we can keep in touch. I have a very low lumbar curve so not sure where I'll be fused. I'll know more this spring....keep in touch...Lynne

[Theresa]

Brandi, I have been there, done that to a greater extent. I am fused T2 to the sacrum. I had anterior/posterior procedures done, hip graft for bone, rib removed, 6 discs removed, an osteotomy at the L3 area. Feel free to ask any questions.

[bbest]

Thanks for your replies...

It is so great to know that scoliosis surgery, while quite an ordeal, is something people get through. I scheduled my surgey this morning for May 22nd. I guess I have mixed feelings about it. On one hand, I am looking forward to life without constant pain, getting off my pain meds etc. On the other hand, I am really nervous about the procedure (combined anterior and posterior w/laminectomy). I am doing a lot of reading and have become more familiar with the terminology and how the procedure is done. But, I guess you don't really know what to expect until it happens to you and you actually go through it. I am worried about the anesthesia because my surgeon told me I would be under for 8-10 hrs. I was also told I would have to wear a back brace for a few months afterwards. I have concerns about how my husband and children will handle me being laid up for a while. I don't know if any of you are moms, but if you are, you know what it's like being the caretaker of the family. I don't know what it's like to be on the other end. I would be interested in knowing what your indivdual recoveries were like. Did your recovery go the way the books, doctors, etc. said it would? Or was it not at all what you expected?

BTW, Here's a little info on me... will find out how to incorporate into a signature.

bbest is Brandi
live in Maryland/DC suburbs
wife and mother of 3 kids 16, 13 and 11
diagnosed with congenital scoliosis, spina bifida occulta, hemivertebra in 2002
Lumbar = 58 degrees
Thoracic = can't remember

Thanks, everyone!

[Shari]

Hi Brandi,

Just think, after all those years of you being the caretaker, it's now your turn. You'll be surprised how they will all step up to the plate!!!

Shari

[Suzy]

Hi Brandi, As a busy mom of son 16 and daughter 10 and a husband. I too had the questions you have about them loosing their caregiver,taxi, maid. My husband has assured me it will be fine. The kids are ready to step up to the plate to do all we need them to do. I have 20 meals in the freezer and have hired a housekeeper to do what I usually do.(The kids will still do their chores.) I will be fused T10 to L4 in 2 days. I wonder how my recovery will go. Like other patients or will it possably be better or worse. I will know soon enough. Best wishes, Suzy

[Theresa]

Brandi, Most of my recovery from my first surgery is under the title of "Just had surgery" in the Surgical (first time) section. That surgery was done in two days. The first day it took 15 hours, then 4 days later another 7 hours. Most of my recovery from my second surgery is under the title "So far, so good" in the Revision section. If you click on my name you can also see all my posts. I also have a hemivertebra that wasn't discovered until they were doing the surgery. My doctor said he's not sure if it's a true hemivertebra because it actually looks like it had been crushed. They also found some of my vertebra was already fusing together. The biggest thing about this surgery is to not compare yourself to anyone else because everyone's body is so different. I didn't go back to work for 5 months but other people went back earlier and later. Remember to take one day at a time and don't push yourself because you think you should be doing more. Really listen to your body and what it is saying. Let the house go. How old are your kids? Are they old enough to fix simple suppers like Hamburger Helper or Mac and Cheese? My husband also would bring take out home a few times a week. For my lunches I had lots of the small frozen dinners in the freezer. I didn't have much of an appetite for quite a while. I hope this has helped you some.

[csbaby]

Been there, done that - get lots of sleep and rest as much as possible

Hi Brandi,

I have had multiple surgeries to get to where I am today. I wish it would have been only one surgery, but it wasn't and that's ok now. (see my signature line for detail on surgeries) But I am finally getting there. Remember, each case is unique to the individual. So is each person's healing. You get out of it what you put into it.

I am now fused down to my pelvis. I also had the spinal stenosis procedure and that was very helpful in opening up my spinal canal to allow more room for all those nerve root endings. Additionally my surgeon spent an extra hour cleaning out all the osteoarthritis around the base of my spine. Any radicular pain and numbness I had in my legs / feet is gone. The aches and pains at the base of my spine are non-existent. I expect to be in great health and pain free in due time. I am just now 10 weeks out from my most recent surgery, and I am going in on 2/27 to repair a loose screw in my pelvis. I am completely ok with that.

And that's the jest of it. Give yourself time to heal. Rest as much as possible. Sleep all you can when you get home from the hospital. I was told by a very dear friend who is a brain scientist that healing occurs when we are in that "deep sleep mode" only. So sleep, sleep, sleep. You don't have to entertain or supervise your family. Your job is to get well. Everyone always tries to do too much too soon. You get to feeling good and then do something you think is simple and harmless, and the next thing you know, you are hurting all over again. (speaking from experience - ha!)

This is a huge surgery at the core of your body. The stronger your abs and legs are, the better. Strengthen them if you need to. Make lunges and squats part of each day in order to prepare for the "no bending" rules. And walking is the best exercise you can do, both before and after your surgery. Your body is going to be stressed to the max - so provide proper nutrition to handle the stress, and eat healthy to prepare for the surgery and to recover from the surgery. Maximize your protein, as that is what your body is made of, and what provides the nutrients to heal. Vitamin B Complex is the stress vitamin and Vitamin C is for wound healing. And of course, don't forget the Vit D, calcium and magnesium we women are required to take. Helps build strong bones they say.

They are going to cut you open front and back. Your belly will have some swelling. And the hip graft is going to be the most painful of all incisions. Wear your brace, take your prescribed medications at the prescribed times - don't skip doses. It's better to keep the pain in control by taking your meds (even if you don't hurt) rather than letting the pain get on top of you. Keep it in check. It's more difficult to make it go away if you become lax taking your meds. Keep your doctor informed of your progress and how you are doing with your meds. Get up and walk daily several times.

Relax and let your family take care of you for a change. If given the opportunity, go to the rehab hospital before you go home from the surgical hospital. Hopefully your bedroom is on the first floor - stairs are hell! Stay in bed, read some good books, pray and talk to God if that is something you believe in, be your own best friend.

If you think something is wrong - don't wait for the next scheduled appointment - call right away. You will begin to feel better probably in 4 weeks or so. But don't let that deceive you. And they will tell you not to drive or ride in car for up to 4 -6 weeks. It's amazing the amount of road vibration your normal body absorbs. But with the surgery and all the hardware, etc - don't take chances you don't have to. Stay home. They may say you can return to work in 6-8 weeks. Take as long as you can to heal. This is a huge surgery and complete recovery is one to two years out.

I wish you the best. If you want to talk offline - I am available. You are lucky you have a husband and children to care for you. I live alone. My mom was able to come stay with me for 6 weeks the first surgery, 4 weeks the second and 6 weeks this last one.

Take care. Christy

[bbest]

Wow. Thanks so much for your words of encouragement and advice. Your personal stories are an invaluable resource. I didn't even think of things like meal preparation and body conditioning. It is very painful for me to walk for more than 10 minutes at a time. My sister in law has a stationary bike and I am going to ask if I can ride it a few times a week (she lives on my street). I will also ask my daughter if she would like to help me make some simple meals and freeze them. It's a great idea and it will give us some real time to be together, talk about any concerns she has about my surgery and so forth. I am just so thrilled to have found people who know what it is like to live with scoliosis. For the first couple of years after I was diagnosed, I had a hard time finding other adults who have scoliosis to talk to. I guess most adults dealt with their scoliosis as children/teens.

Suzy and Christy, I wish you both the best of luck and pray you will have a safe an easy recovery.

Brandi

[LindaRacine]

Hi Brandi...

I don't know if this is the case for you, but in my case, it's very painful to walk slowly (as in shopping, strolling, etc.), but when I walk at a decent pace on the treadmill, I have no pain.

Regards,
Linda

[bbest]

Unfortunately for me, walking is painful at any pace. I get pain in my lower back and right above my buttocks and the worst pain is in my calf and down through my foot and toe.