An email update to my friends following my AVM surgery:
It's now been exactly a week since they rolled me into the OR at Toronto Western.
Here's how things stand. The surgery went well, as far as I can determine. I heard precious little from the surgeon - no details whatsoever afterward about the surgery (McP: this is where I could have used you) - and a very small amount second-hand through PetDoc and Colleen from a chance meeting they had with him in the hall while waiting to hear about me. They really had to get quite aggressive in order to get more than a dismissive "We know what we're doing." He did tell me I no longer have a spinal dural arteriovenous fistula and, after all, that is what it's all about. The goal of the surgery, his assistant reminded me repeatedly, is to stop things from getting worse; any lost function which returns is bonus.
I was supposed to return to PetDoc's apartment later the day of surgery - wasn't gonna happen! I had excruciating pain moving and was admitted to get that under control (ya gotta love the morphine pump - wouldn't let me take it home, though). Thursday I would have gone home in the evening but we discovered a pretty significant rash which the doctor couldn't explain. I was given Benedryl and moved to a semi-private for the night. The next morning Colleen and I got a cab to PetDoc's (she was working Friday). I was still, at this point, experiencing the excruciating pain but pain is not a hospitalizable offence. The pain was never from the incision but more generalized and quite intense when I would move - I mean scratch-my-nose move. Just as I was beginning to fret about how I would arrange for more pain medication (the hospital's pain-doctor-expert-lady had prescribed what appeared to be a very short course of medication) PetDoc (nice having a real doctor in the house) diagnosed some of my pain as muscle pain and we found that an extra-strength Ibuprofen in addition to what I was taking did the job!
Yesterday we returned to Gananoque - Toronto to Colborne with PetDoc and Colborne to Gananoque with Dadamom. It is nice to be home and as I become more mobile I'm looking forward to getting back to familar activities. I'm pretty much over the trauma of the surgery and weakness, etc. of lying around for 2-3 weeks and it's time to get on with it.
The major deficit is muscle stiffness and weakness in my legs and feet. I have the strength to stand and could kick a soccer ball - it would just feel very different from this time last year: more like I was swinging a log attached to my hip that was jointed at the knee. I can feel my legs and feet just fine and bend my knees, ankles, toes; it just feels very stiff with a sensation of numbness. I still become numb through the whole pelvic region if I sit without my 'special' cushion.
We were told that the compression of my spinal cord would be relieved over a period of weeks and what is going to happen quickly should happen within a couple of weeks. Any further recovery will takes months and even years. I'm going to start some exercises and return as soon as I can to regular activities. One of the most significant obstacles is still my feet - when I remove my sandals my feet and ankles become almost immediately very numb. No other footware prevents this from happening. Therefore, navigating in snow is awkward; I would grab a shovel and piddle around in the driveway or on the back porch if I had a way of making it less unpleasant; I may just have to learn to tolerate the unpleasantness. Or this may be one of the changes that will take place over time; Colleen, fortunately, understands completely about the feet (one has to be very understanding to tolerate sandals 24/7). After her stroke, she had a similar feeling and she encourages me by telling me that it was a year or more before that sensation changed.
If you have reached it to this point in my email you must be a real die-hard or a masochist. I thank you all for your help, concern, prayers. I apologize for the length of this missive, but I'm trying to make sure I have passed on an adequate amount of information to everyone who might care.
Will keep you posted (albeit more briefly) as things progress.
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