Tumor at Spinal Cord

They started radiation this past week. Just 5 sessions at 15 min.
It's still really difficult for him to stand/walk, but Physio and OT working with him. He's at 4 weeks now since the spinal cord tumor was removed.

Not sure what the plan is going forward. He just wants to come home from the hospital, but because he can't stand/walk, they don't want to send him home.

It sounds like they caught it just in time. I went from "difficult to walk" to "paralysed from the ribs down" in just four days, so every hour counts with an aggressive spinal lesion.

It took me over a year to get back to where he is now. With luck and good physio, his recovery will take weeks, not months or years.

It will still be a tough road, though; there's no such thing as an "easy" spinal injury.

Does your city have a physical rehab centre he could go to (and maybe stay in) for a little while? They have amazing facilities, like adjustable chaorsy, kitchens, every kind of exercise machine, and (in the case of mine) a full apartment where you can practice things like getting in and out of a bathtub, all under care and close supervision by physio- and occupational therapists.

Best of luck!

Hi,
Thanks for your post.
Right now he's in the hospital, where he's been for 4 weeks, and they are talking about moving him to an intensive rehab unit at the hospital, but nothing has happened so far. He finishes the 5th and last radiation treatment tomorrow. I'm hoping they do another MRI to see if they got all of the tumor now. This was so unexpected. It never showed up on the bone scan or CT scan. We're scared, but every day a tiny bit of improvement. I was hoping once the tumor is gone off the spinal cord, that the strength in his legs and his balance will come back.

@cal77 Rehab is like magic (very challenging magic, but still, magic). It's worth being a little annoying over.

I must have asked the doctors and nurses on the critical care floor every day for a month "When can I go to the rehab centre?" They probably held a little party when they finally got rid of me. 🙂

@northoftheborder

Did you get chemotherapy at the same time as rehab? Right now they are debating if they should do Chemo along with Rehab. But how do you get intensive rehab while undergoing Chemo that makes you so tired and weak? Other than being tired, he feels okay. They have him riding the recumbant bike for 10 minutes, doing 2 sets of stairs ( each stair case has only 4 steps). and trying to walk with a walker. It's all very difficult and tires him out. Is it the cancer making him so tired, then they should do chemo and some rehab I think.. Need to focus on the cancer. I think we find out tomorrow what the plan is.

@cal77 I didn't get chemo because I had just the one metastasis. Typically, they use local radiation for under 5 (or so) metastases, and chemo for more than that, or perhaps if the cancer is castrate-resistant (I'm not sure sure about that).

Hi,

My husband came home from the hospital a week ago. OT and PT were very good at the hospital, but now we get 'in-home' physio which is not as good. They had him cycling on the recumbant bike for 12 minutes, and doing an arm 'cycle machine'. Then in the afternoon they would get him walking and going up and down 5 steps. It seemed he was better in the hospital He finished radiaion- 5 sessions, on Dec. 8th. He was tired the week after. He seems quite tired now, so not sure if that's delayed radiation side effects or just mental stress from being in a wheelchair and everything is so difficult to do. We take for granted getting out of be and standing and walking to the washroom, etc. Tough time for us.

We see the Oncologist first week of January..Doubt if he'll do Chemo as 2 weeks ago he said he wouldn't start Chemo if my husband is just sitting in a wheelchair..So...how do we stop the cancer. They should've started Chemo a year ago!

We keep fighting the battles..

@cal77 I'm sorry you have to fight the ableism as well as the cancer: why *shouldn't* someone in a wheelchair have equal access to chemo? When I had my first radiation, I couldn't even sit up in a wheelchair: they had to lift me up on a sheet and slide me over from the stretcher.

It makes sense that there's a bit of a letdown now that your husband has come home: he's moved to a less-structured environment, and the burden of keeping up with PT and OT is mostly on him now.

I can say things like "Don't give up", but I know from personal experience that it's easier to say than to do. You have to dig deep and believe in the possibility of hope, even if you don't feel it yet. And some days (or weeks), that will just be too much, which is OK. But the next day, dust yourselves off and try again.

Thanks...Nobody wants to spend their life in a wheelchair. My husband was so active, so this is really tough. Noone will say 'when' he will walk normally again or ride his bike. It's the unknown that is scarey.
Yeah, he already has some days when he wants to give up. Everything he does from a wheelchair now is a monumental task. Just getting in and out of bed or getting dressed.
PT came to the house and had him stand at the kitchen counter and hang on to the counter while he did squats, and knee raises and swinging his legs back and forth. I guess working all the muscle groups in the leg. He is walking maybe 25 feet up the hallway 4 times a day...But progress is slow and this is what is hard to take.
He also seems so tired. Maybe this is still after effects of the radiation.
Can I ask how old you were when you had the surgery? My husband is 72.
Thanks for your post. It really helps.

@cal77 I was 56, and yes that could make a big difference. But it was also a few months before I could try even bearing some weight on my legs while holding onto bars, much less taking 25 steps on my own. The early stages of recovery are the most discouraging, but they're also when you're making the most progress, even if it doesn't seem that way at the time.

If your husband ever trained for a marathon or similar when he was younger, tell him this is tougher — way tougher. But if he was active before, he has the mental tools to do this.

All progress is good progress, even if he doesn't end up where he was before. For example, there's a world of difference between being carried down an airplane aisle by staff and set in your seat, and being able to get out of the wheelchair at the end of the jetway and slowly make your way down the aisle, holding on to the seat backs.