Toughing it out … pain + patience …


What a challenging, painful week this has been!

At the Tongren Hospital, most neurosurgery patients who participate in the Kunming Walking Program start standing balance practice about 15 days after surgery.  Dr. Zhu Hui has an interesting rationale for this fast-track protocol that I’ll cover in another post in the near future.

Yesterday was my 15th day since spinal surgery, so I went to the hospital to try to get back into the flow of the program. I managed to stand up successfully for 4 minutes without passing out  …  🙂

May 30 - standing after 15 days of surgery with Dr Zhu

Standing 15 days after surgery (to left Dr. Zhu Hui)

Yes, after being in bed for a few weeks it takes a while to get back your balance.  At least I was able to stand up bearing 100% of my own weight without a binder or pressure stockings, so my blood pressure is holding up pretty well.

However, I ran into some unanticipated and very painful difficulties.

Unfortunately, the back-of-neck incision site of my surgery is still really painful, even though it looks to be healing fine.

15 days post-surgical scar… And of course my poor shaved head growing in:-)

How do you like the haircut?

I suppose this is understandable considering how many titanium rods and screws have been added to my spinal column!

Anyway, after I stood for the first time yesterday, I had such a severe reaction that it felt like I was breaking my neck again, so I had sit down right away and be taken back to a hospital bed to recuperate on my side for a couple of hours.

My Dad and I suspect that there’s still quite a lot of inflammation inside my neck, which has forced me back to bed at home for at least another few days or maybe as long as a week.  We’re sort of flying blind here, although my good friend Nu Jia from Guangzhou tells me she had pretty much the same experience after virtually identical surgery.

So the bottom line is that my Dad has me under house arrest right now, as I am unable to move my head freely left or right and almost any sort of exertion provokes severe pain.  But at least I have stopped taking painkillers for the time being, just relying on Acetephetamin to take the edge off.  We have both morphine sulfate and Tramadol in reserve, but I only want use them as a last resort.

When I first moved to China in March, the neuropathic pain was so severe that I got sort of addicted to painkillers … not the cleverest idea, of course, but in the circumstances they kept me from going completely out of my mind.

I must say I’m a little bored with bed rest, but I need to get these pain levels down before I seriously start the walking program again.

Every day in the afternoon I have Xiao Kong, one of my physical therapists, come over to the house in order to stretch me and work out my arms with weights.

Physical therapy aside, I have to say this is my favorite time of day because I have a lot of fun joking with 25-year-old Xiao Kong.  The Chinese are pretty reserved in their conversations, but Xiao Kong is such an adorable guy that you just want to eat him up like a cupcake!   So I mess with him a little bit, asking questions about his girlfriend, about what he does his free time, what kind of drinking games he plays, etc.

These topics are generally not talked about in public by the conservative Chinese, and I’ve never seen somebody’s face get so red so fast before!

Xiao Kong

 Xiao Kong working out Froggie and me!

Anyway, overall I’m sort of treading water right now, trying to be patient for the surgery inflammation to subside while still battling intermittent bouts of severe neuropathic pain.  I think the neuropathic pain comes as a sort of Dysreflexia response to the acute pain in my neck, but who knows?

5 responses »

  1. Ali, I have so much respect for you. You are working so hard and in pain but still manage to keep you humor in tact. A lesson I need to learn when it gets nuttsy out here! I love reading your blog and keeping up with your progress. Not a day goes by that we don’t think about you and your family. We all miss you tons! Hugs to you and a special super hug for you Mom whom I miss a ton too! love and kisses… Pam

  2. Thinking of you all the time, Ali!! I’m glad to hear that Nu Jia has been able to talk with you about this, since I don’t think anyone but someone who has been through it really knows what to say. Hang in there (I say that even though I know you will :))

  3. Thank-you Ali for your inspiring blog. I am so amazed you are doing exercises whilst in so much pain.
    Love the frog!!!
    Sending you and your family a big hug. Tania.

  4. Ali:

    Two steps forward, one step back… but you never stop trying!

    We have some friends with family split between Vancouver (Canada) and China. Turns out their family home is TEN MINUTES from Tongren Hospital. WHAT ARE THE ODDS?? REALLY!!!

    One of the family members is an executive with an airline that flies into Vancouver every day — which means we can get a package delivered to Kunming faster than FedEx… and we want to send you a little package to cheer you on in your effort. Our friend will drop it off. Who is there with you — from the family right now? What’s the best way of contacting someone to organize delivery?

    Best wishes with the program.

    • David, what an unbelievably small world, I mean seriously! I would not say no to a care package 🙂 I do love them:-) I will find out the exact address where it is best to send the package to be where I will get it. Does it have to go through customs? We have had some problems with packages in the past, but if your friend is connected that it should not be that big of a deal.

      hugs, Ali

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