Spinal fusion and/or bone grafts? Need some help.

[bearmom]

If you've had either of these procedures, I'd appreciate some help.

Abbreviated version: I need more help than the surgeons office (or even online sites) has given me to prepare for several of these procedures to make my recovery easier.

What I'd like to be able to do is prepare as much as possible in the week or two I have before they do these surgeries to help me during the time I'll be disabled. Something like doing leg squats now, so I can pick up lower things pli e style without bending my back? Strengthen arms to help pick up the slack from limited mobility?? Hang a handle from the ceiling over the bed to help with getting out?

I just don't know, and want to know what you did, or wish you had done.

Longer more blabbery version: The surgeon has given me really basic info like have a walker and "grabber" available, plus a slave for at least 3 weeks, but the sheet they gave me of things to supposedly help afterward, is so basic as to be useless.

I'm freaked because the surgeon has warned me it will be a painful and slow recovery, and that I won't be allowed to even start physical therapy for 3 months. I hope he's exaggerating, but he's made this sound hellish. I'm going to be a useless blob of atrophied muscles after 3 months of doing nothing.

Oh, I'm also wondering about different or more calcium to aid the bone grafts. The surgeon says do nothing special that I don't already do, but I don't think he has many patients with malabsorbtion and calcium absorption IS and has been an issue for me.

BTW, the need for this surgery has nothing to do with my DS or malabsorption of calcium, but in fact is now POSSIBLE because of the weight loss from my DS. I was originally told in 1996 that this may be needed in the future, and again in 2006 that I would absolutely need to address the back issues, but was probably 100 lbs over weight by then, and my group health doc at the time said I needed to lose weight for them to operate. I'm terrified and dread the whole thing, but am grateful that I CAN have a surgery that is going to save me pain and permanent nerve damage in the future.

 

[newanatomy]

I am sure there will be people along soon to answer some of your questions. I just wanted to say I hope it all goes as well as can be expected for you and that you have a quick and complete recovery!

 

[JackieOnLine]

I'm freaked because the surgeon has warned me it will be a painful and slow recovery, and that I won't be allowed to even start physical therapy for 3 months.

that is scary I hope someone has info for you; I will just wish you the best.

 

[DianaCox]

Why not go into a rehab facility for three weeks? If I didn't have a "slave" to stay with me, I would think it would be medically necessary.

 

[southernlady]

Hang a handle from the ceiling over the bed to help with getting out?

I was told by the PT people to NOT use the one over my hospital bed...it pulls on the spine in the wrong way.

To get in and out of bed, practice the log roll.
To get out of bed:

1. Roll onto your side.
2. Bend your knees until your legs are hanging over the side of the bed.
3. Use your arms to lift your upper body up so that you are sitting on the edge of the bed.
4. Push off with your arms to stand up.

Leg squats will help but I learned to ask dh or leave stuff on the floor til he came home (he was working full time when I had my first one in 2006).

I'm freaked because the surgeon has warned me it will be a painful and slow recovery, and that I won't be allowed to even start physical therapy for 3 months. I hope he's exaggerating, but he's made this sound hellish. I'm going to be a useless blob of atrophied muscles after 3 months of doing nothing.

THREE MONTHS??? I was started on home PT at 4 weeks out. They also gave me water PT when I was finally released to drive.

Okay, I will admit that my first back surgery was the MOST painful surgery I have ever had. It took me almost a week before my feet cooperated enough to walk from the hospital bed to the bathroom. My second one was a piece of cake in comparison. I was out of the hospital in 2 days, walking around...first week it was limited to the bathroom or around the dining room table (sound familiar?) And I had to use a rolling walker for the first month. My first jaw surgery was second worse...compared to either of those, my DS was a walk in the park.

What level is yours? Mine first one was L4/L5/ and S1. Second one was just adding L3 to the previous fusion.
Hard plastic back brace for the first one. Had to wear it for 12 weeks. And for the first month, the ONLY time I was allowed out of it was the FEW mins in the shower, sitting on a shower stool, propped against the wall with dh washing me
Had a soft back brace I used during my second one but he didn't actually give me one at all. Still had the shower stool. But the help I needed was much less after the first week.

If you have someone home to help, avoid the rehab facility. Food there is usually deplorable and very carb heavy.

Also learn the BLAT mantra...No Bending, Lifting, Twisting, Arching. (Driving is an issue cause you tend to twist to see behind you even with a back up camera or twist side to side).

First surgery, my lifting limit was 5 lbs...
Second was a gallon of milk.

Something else to get...a long handled back scrubber so you can reach your legs sitting down.

As I think of other things I will add them.

 

[Larra]

Rather than a rehab facility, how about a home health nurse or some other individual who would come to your home every day to assist with bathing, anything requiring bending/lifting, etc? You would be so much more comfortable and at east and rested at home than in any facility.
Other than that I have nothing to offer other than sympathy and best wishes, and get into PT as soon as your surgeon allows.

 

[southernlady]

I WAS in a rehab facility the first time...for three weeks after I got out of the hospital.

Reason being, no family in the immediate area and dh was working 12 hour shifts during a planned utility outage.

Worse 3 weeks I ever spent. I was lucky to get rinsed off daily. My hair was nasty cause they didn't have the staff to help me wash it more than once a week. One of the first things I made dh help me do was wash my hair when I finally got home.

I agree with Larra...try for daily home health care visits or a good friend.

 

[ginger]

It depends on what level is being fused. I had C3-5 fused in 1995. I was not allowed to drive for 6 months. I recovered at home with home health and then family help after a couple of weeks. I was in a halo to start. I would recommend donor bone if possible as the bone grafts I had were so painful. I had been recommended bone grafts due to many allergies and they were concerned about rejection. I am sure they have come a long ways in this department, but I will never do donor bone again if it's needed ! Your restrictions are due to the new bone has to heal in place and not get displaced. Please follow and and all restrictions.
HTH

 

[bearmom]

I have considered staying in a facility or getting a home nurse in part because Premera has been an absolute PITA over paying covered things lately, and I'm feeling like "if they should be covering XX, then they are damn well going to pay for XX". Premera doesn't deserve a break just because I have people to lean on. I know that's not the right reason to make Premera cover something, but if hubby had to use one second of his sick or annual leave to help me, then I'd probably go that route. He's twice my size and thinks this will be easy for him, but I'm keeping outside help on the table just in case.

Elizabeth, we are going to be back twins - everything from s1 to l5 either gets a bone graft of pinned. An accident from a misguided jump on a toboggan (I am aware of how stupid I am, and was too old even at 19 to do such an idiotic thing. I deserve every bit of this, I know) left me with a stress fracture causing spondylolisthesis at L5/S1, and those two freely slide independently of each other. The degree of this was only recently realized, as it took lots of imaging with me moving to realize how much movement is happening between those two. If I didn't have Group Health or had been much more assertive this should have been resolved many years ago.

Then, everything between L1-L5 has become deformed (now wedged the opposite direction than they are supposed to be) from the years of adjusting positions to try to minimize the pain from the fracture and movement.

I appreciate the helpful hints. The only one I know is the log roll, because I've been doing that since October because of the ramped up pain from this. I'll apparently have a brace for 3 months, and nearly cried when he told me this (I went in expecting to be sent to more physical therapy, so this was all rather sudden). I was also in shock hearing other than walking, I can do very little, and mentioned that my muscles will be atrophied after 3 months, and he just agreed. He is even concerned about my walking, because what prompted this was that he is worried about permanent nerve damage to my foot, and if a numb foot causes a fall during recovery it "could mess up his beautiful work on my back". I need to ask about the water therapy, as that would remove that risk.

They also said I had the best chance of the bone grafts taking if I was my own donor, especially if taken from the back pelvis, as it has some cells that help with regeneration that the front pelvic bone lacks, rather than using the donor bank. He also said the donor site will be a source of longer term pain. Sigh.

 

[newanatomy]

You absolutely do not deserve this no matter what stupid things you did. We all do stupid things!

 

[robs477]

I have no real advice or words of wisdom, unfortunately, BUT...I do want to extend to you my best thoughts and wishes for your complete full and successful recovery.

 

[southernlady]

we are going to be back twins - everything from s1 to l5 either gets a bone graft of pinned. An accident from a misguided jump on a toboggan

At least you know the WHY it happened. Mine just was the bad luck of the draw. If it can go wrong in a spine, it has with me. Mild Scoliosis | Arthritis of Spine | Spinal Stenosis | 2 herniated disks | 2 Nerve blocks: November 2005, December 2005 | Laminectomy with spinal fusion of L4/L5/S1 and 6 screws for support 13 March 2006 | L3 fusion with 1 pin & screws Oct 2013. Thankfully it's all titanium or I would set off metal detectors just walking NEAR them,

What got me to surgery in the first place was losing feeling in my legs causing a fall. That may be part of why it was SO hard to walk for a long time after.

And just because your back is hurt doesn't mean you can't carefully work your arms while sitting. Even my home PT was very limited...mostly I had to stand next to the kitchen counter and hold on while gently lowering myself in a squat of about 1 inch. I had to focus on keeping my back straight and relearn to use my core muscles. I did ONE the first day. (and that wore me out) Took 2 weeks to make it to 5. BUT I had a home PT specialist standing next to me when I did them, 1) To make sure I did it right and 2) to watch me carefully to make sure I didn't fall.

The water therapy was wonderful.

I had a bone graft healing pack attached to me almost 24/7...except the shower/pool time for 6 weeks.

I did find out that hard chairs are terribly uncomfortable...they need to be firm but not hard. I had several "easy" chairs that were very firm...dh would get me settled in one and I would be fine for awhile. I had it right next to the bed and 10 ft from the bathroom. It was just the kitchen that was a major trek.

I hope you have a shower with very little lip...they will not want you lifting your legs to go up or down ANY steps. Even door sills are almost too much.

IF I had the option of a home health nurse, I would definitely go that route. Esp as a DS'er. You will also need to get with the hospital dietitian to get plenty of protein and fat after as the pain of constipation is horrendous esp since NO pushing is allowed, it just has to happen on it's own. I was able to get more fat than was typical for a hospital but I still ended up having to have an enema cause the pain of being blocked up was SO bad. Once I got home it helped to be back on my normal routine. The lack of fat in food is another reason to stay away from a rehab facility.

 

[DSRIGGS]

It depends on what level is being fused. I had C3-5 fused in 1995. I was not allowed to drive for 6 months. I recovered at home with home health and then family help after a couple of weeks. I was in a halo to start. I would recommend donor bone if possible as the bone grafts I had were so painful. I had been recommended bone grafts due to many allergies and they were concerned about rejection. I am sure they have come a long ways in this department, but I will never do donor bone again if it's needed ! Your restrictions are due to the new bone has to heal in place and not get displaced. Please follow and and all restrictions.
HTH

I had an ACDF in 2011 (long story but I ended up almost dead and in ICU for 5 days). I can never remember the exact level but my right shoulder and arm had bad pain and my right thumb and index finger were numb from the nerve damage. Once I had my strength back I was driving (few weeks after 11 day hospital stay).

Bear Mom.....For me there was no real prep that I feel would have prepared me. As others have mentioned, have a serious helper, home nurse or rehab stay if you can. Best of luck to you!

 

[star0210]

I'm so sorry you have to go through this...
I had fusion surgery scheduled last spring but cancelled it. I was too chicken!
It was going to be L4/L5 and L5/S1.
You will be in my thoughts and prayers!!

 

[terrik]

BearMom, wishing you success. I had ACDF in 2007, C4/5/6 with cadaver bone and plate. I was told that bone grafts would cause me more pain than the neck surgery. I wore a collar for about 2 weeks, I have some limited range of motion. Not sure what prep you can do except be informed. Mine was caused by a hard fall on black ice.