Thursday, August 6, 2009

hindsight is 20 20

Looking back now, I can see where it's been coming on for quite some time.

But I ignored it, figuring if that was my only problem, I can live with that.

I'm talking about the weakness in my hands and arms.

I knew that it was getting hard to open jar lids or bottle tops...that cutting anything like a block of cheese with a knife was getting difficult. That way of holding the knife lends itself to excerbating the weakness...really shows it up.

Now, my hands are weak all the time. Cutting a slice of cheese off a chunk is nigh impossible. Using a can opener? No can do. I've become much more aware of turning door knobs


Holding a newspaper up to read it.

Or a book while lying in bed.

Holding the phone. When I'm done talking to someone, my hands and arms hurt so much.

It's not a stretch of the imagination and it didn't take an old Indian tracker to see this one coming. Because, when I regained consciousness after my injury, I felt the electricity zapping through my arms down into my hands, and down my legs into my feet. I prayed to not be rendered paralyzed and that prayer was answered, thank God.

After my horse wreck, I did have problems with my arms. If I used them, they'd get painfully itchy, and also have lancinating pains sparking here and there throughout them.

That horrendous, central nervous system itch went away for awhile. And it didn't seem like my hands were the main problem and I was able to continue on to some extent.

How I'm wired is that I will "do" and keep on "doing" far past signs of pain or weakness. So, there is no excuse for my weakness to progress, unless it is from the spinal cord. I mean, I am my own physical therapist and I keep as active every day to the extent that I can, and even past it, some.

So, today, the pain and weakness was very evident, and I had to avoid anything where I was using my hands.

Have you ever tried that? Of course, many of you know exactly what I mean. But when you can't type or wash the counters or pull weeds or hold a book or even a water hose, then there isn't much to help the time go by.

It's been a long day.

But...I am so thankful I have this appointment coming up. I'm so happy that someone looked at my imaging and saw something he could help. I can't wait until Sept. 16.

Followers of this blog have been down this road with me before. Same ol' story, different doctor. Different city.

I'm not jaded but I'm wary.
If I were cynical, I'd not arrange the trip.
But having been through what I have so far, it takes its toll in trust and faith in mankind.

Of the medical type.


Anonymous said...

Sorry you have vertical settling; I hope your appt. in Bethesda goes well; I haven't double-checked the location of John Hopkins, but hope the specialist is located there as I think I recall that they had a top-notch spine surgery dpt. when I was trying to find a neurosurgeon other than the ones who had told me that my ever-expanding Jefferson fracture was doing great! I'm sure you already know this, but a skull-base surgeon is the best bet. I'm on the West Coast, so am familiar with specialists here, but Curtis Dickman at Barrows in Ariz is very highly respected. No bedside manner but the Nurse practitioner more than makes up for it. Anyone who has done a fellowship in neurological surgery, esp. skull base surgery at Barrrow is likely to be very well trained.

I wasn't told if my transverse ligament had ruptured - seems like they would have been able to tell when they fused c1-c3 (I also broke c2). Most recs, including Dickman's, were to go from the occiput to C3. I am still having a lot of problems with pain, but the surgery was done b/c they 5th neurosurgeon I saw for a "2nd opinion" after my nuero told me I was "fine," told me he was surprised I wasn't dead, ordered an MRI STAT, and said he was fairly certain I had basilar invagination. I could wait and watch for more cranial settling or vertical migration of the dens, or I could go ahead and have surgery to stabilize my spine, which would presumably stop further settling. As far as I know, it did. B/c I didn't have top notch neurosurgeons for the first 4 months (I tried, but couldn't get names - no one would say that anyone was better/worse than anyone else, or how to find someone good), I missed a critical window of opportunity when my neurosurgeon might have been able to pull the bones back closer to their normal location - they were difficult to move since my surgery was 7 mo after the fracture.

I imagine the surgeon you are seeing would do something to stabilize your spine and stop further settling. The two other hospitals on E. Coast that looked good were Mass Gen and Doctor's Hospital. Cleveland Clinic in Cleveland also looked good and I think Mayo was on the list as well.

After my experience, I wanted a top-notch dr. AND a top hospital...If you have surgery, be sure to have your husband/friends with you 24/7 after your surgery - I needed that at a hospital ranked in the top 10...

Also wishing/hoping you can find a Pain management specialist who will prescribe a higher dose of meds - your dose is astoundingly low and a higher dose could increase your ability to function considerably. I realize it isn't easy to find a good pain dr. though...

All my sympathy and best wishes . . .

By His Grace said...

Diana, thanks for your insightful comment. Please email me so we can visit privately. My email address is (remove the blank space)
virginiabennett @

THanks for visiting the blog and I hope to hear from you again soon. Krista, who visits from time to time, also suffered a JF, hers from a cheerleading accident. There are not that many of us.