I have officially passed the three months since surgery and my "before surgery" life feels like a lifetime ago.
I'm sleeping well for the first time in a couple of years, but sometimes in my dreams I am walking normally and easily. I wake up to the reality that my feet are still numb, I don't know where my right leg is and I definately don't walk normally and easily.
I am in the dark days - those days between medical healing and mental adaptation. Energy has returned so I'm feeling cooped up, bored, and resentful of my inability to walk for any kind of distance. The Olympics are only a minor distraction, and if anything, reinforces to me what proprioception does for the human body. My mind is starting to atrophe from the lack of mental stimulation so I am making a hard push to get back to work sooner rather than later.
But somehow through these times, I still surprise myself with my acceptance of the need to push hard. I drive to physio and try to talk myself into wanting to be there ... trying to reprogram the voice in my head that is saying "ugh .. I really don't want to be doing this today". I strive for something more positive, at least "okay, let's just get this over with". Inevitably physio guy expects me to do things I don't think are possible, and while not always 100% successful, I manage to avoid making an idiot of myself. (Like Friday ... "I want you to go up these stairs, two at a time, no hands ... then down". RIGHT. You're out of your mind.) After I was mostly successful at that, he admitted that he can't plan my program ahead of time. I am often successful at things he doesn't expect me to be able to do and he has to make things up on the fly. I took that as a compliment :)
And even in these days of mental defeat, I still manage to set outrageous goals for myself.
Yesterday I took out my favourite pair of shoes ... 4" strappy silver stilettos ... and tried them on. The smartest thing I did was to stay seated - clearly my proprioceptive skills are not ready to handle balancing on my toes and half a centimetre stiletto tip. I would have snapped my ankle.
Today I tried a spin class. I can't ride a bike - with no balance and my right foot likely to slip off the pedals, riding out in the real world would be asking for trouble. But a spin bike is hard to tip over and I can clip in my feet.
I lasted 25 minutes and it was HARD. I was only able to do the first two standing intervals, and my heart rate was through the roof almost immediately (I don't know what it actually was - I wasn't wearing my glasses so I couldn't figure out which was the start button on my heart rate monitor! That tells you how long it's been since I've worn it.)
The stilettos will have to continue to be contained to the bedroom, but spin classes ... look out! You are next on my list of things to be conquered.
Hi...!
ReplyDeleteMy wife and I ran across your blog and could really identify with it, she had a surgery almost identical to yours back in 2010. One question, please: the day after the surgery, or anytime soon after, did they do a follow up MRI? Thanks! Best of luck to you in your recovery efforts! Don and Maxine
I hope your wife has had a successful recovery and is doing well today. No MRI yet - not until the end of September. My neurosurgeon is not concerned about the tumour, but wants the MRI to see what, if any, nerves have started to heal. He delayed the MRI to allow all of the swelling to go down, and to allow for almost 5 months of repair.
ReplyDeleteThank you so much for your reply. We appreciate your blog, it is very helpful. Maxine did have complications. Her neurosurgeon was not as helpful as yours. We are glad you have had such a good experience so far. Maxine also went several years before a correct diagnossis. One question we wanted to ask you, did they let you lie on your back after surgery or was that even comfortable? Take care! Good luck with the rehab! Don and Maxine
ReplyDeleteRe: lying on my back - my pain was very well managed so I spent 95% of my lying down time on my back. No discomfort whatsoever. I had 30 staples that were removed around day 8, and the incision has healed very well - no adverse effects from lying/sleeping on it.
ReplyDeleteOK, thanks! Did you get a break from physical therapy after you got home, or did they have home care PT/OT start immediately?
ReplyDeleteTake care,
Don and Maxine
I was lucky - I only had a one week wait between arriving home and starting out-patient physiotherapy at a rehab hospital, so no real break. (I could have used private insurance for in-house physio if the wait had been longer).
ReplyDeleteI had an OT come visit the house - total waste of my time, so there was just the one visit and I told her to close my file. I haven't had any OT since May, and don't need it.
Sounds like a good schedule. Nice to have a break but not too long. Did your surgeon warn you of any functional limitations because of the laminectomy? Maxine has had some occasional back pain but we can't tell if it's from the muscle/laminectomy or something deeper in the spinal cord.
ReplyDeleteThe functional limitations he warned me about were not because of the laminectomy per se, but because of having to remove the tumour from inside my spinal cord. He drew pictures of what the surgery was, he showed me the MRI and explained which vertebrae he was going to have to cut and showed me the extent to which the tumour had taken over my spinal cord. My tumour was T6-T11, so any nerve damage and resulting functional limitation would be waist down. He explained that I could walk out of the hospital or that I could be paralyzed, or anything in between.
ReplyDeleteHe then called me back into his office five weeks later to talk through the whole thing again and go through all of the risks again, to make sure I was sure.
In terms of back pain, if you discount the latissimus dorsi that I tore because of improper form and posture relearning how to walk, I've had none. Zip, zilch, zero. My back actually feels better, lighter and more flexible than before. One could argue that's because I'm missing pieces of six vertebrae and their corresponding ligaments or it could be psychsomatic :) But after about eight weeks when the healing was done, no pain at all. My back functionality (for lack of a better word) has improved as a result of the surgery.
From my experience, I would tell anyone with unresolved pain to get it checked out, and checked out and checked out, until you find someone who can accurately diagnose it. My experience was so much worse than it needed to be because I listened to my initial doctor even though her diagnosis felt wrong.
Sarah
It sounds like you had a really excellent and experienced surgeon. Could we ask his name? Perhaps he or she is someone we could get a second opinion from! Best, Don and Maxine
ReplyDeleteI'd rather not publish his name publicly without his permission, but if you send an email to me at intramedullary.ependymoma@gmail.com, I'd be happy to reply to you privately.
ReplyDelete