Yesterday's spinal arteriogram revealed a hole in one of the blood vessels in the thoracic spine. Dr. Chan, who did the procedure, said he could have fixed the problem while in there if his probe had been a bit smaller (he went in from the groin) but, alas, that will have to wait.
Diagnosis: what I have is Foix Alajouanine Syndrome (in English, spinal dural arteriovenous fistula), a very rare condition discovered in 1926 by two Frenchmen that feels and acts like normal peripheral neuropathy but is instead the cause. My neurologist, Dr. Mulpur, has only encountered four such cases in his twenty-two years of practice. The progress of my condition can be halted by a surgical procedure going in from the back that will remove a section of the offending vein, returning the blood flow to normal, relieving the pressure on the spinal cord. This pressure is what has caused the problem from the beginning. The procedure will be performed by one of the finest specialists in the country, Dr. Dan Barrows at Emory University in Atlanta. Drs. Chan and Mulpur are working as I write to schedule an appointment that fits Erin's schedule so that we can get this done ASAP.
Prognosis: Symptoms that generally respond well to this treatment are walking difficulties and muscle strength, which believe me are my most serious problems. In other words, there is hope and a chance that I will walk unassisted again sometime in the foreseeable future (within about two years; it was slow in coming, it will be slow in leaving). I should sense improvement within several weeks after the procedure. I may not tap dance or run again, but I hope that I can at least return to shooting hoops (a whole-body endeavor, which is why I had to quit: I only had half a functioning body) and stand in front of a chorus again without leaning on the piano or using a stool. Maybe even yoga, if I can get off the floor smoothly.
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I wish I could drive to Atlanta and have this done on Monday, but alas will have to wait on Barrow's schedule.
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Profound thanks to Dr. Stephen Somerville in Green Bay, who saw me over Christmas, looked at all my medical records, and said "No, it's not neurological, it's spinal and it's in the thoracic spine." He was correct. Thanks to my wonderful GP, Dr. Ghanta, who ordered the MRI with contrast of the thoracic spine. Thanks to my neurologist, Dr. Mulpur, and the neuro-radiologists who read the MRI and definitively confirmed Somerville's diagnosis. Thanks to Dr. Alex Chan and Nurse Moss, who were not only professional but personable as well. Boos and hisses to the anesthesiologists, who put me out so fast that I didn't even get three seconds of '60's opiate euphoria. I had asked for thirty seconds and should have gotten it, given what those guys cost.
More anon. When I have news, you'll get it. Thanks to all the faithful: Xn, Katie, Bob, James, Pam, Joe.
11 comments:
This is great news! We certainly wish you a full recovery. We also wish it could be speedy.
But we're still young, right?
Wow! What incredibly hopeful news! Continued prayers/positive thoughts coming your way...
I'm sorry about the quick black-out from the anesthesia, but the results of your upcoming procedure give me a reason to cheer. I hope you can get this scheduled soon and I hope and pray for a better-than-expected recovery! Keep us updated!
Bill,
This has been a real medical odyssey, getting to where you now are, knowing what you know. Persistence does pay off. Best wishes for a sterling outcome.
Steve
I am very hopeful that this will fix it! Much better than the previous diagnosis. All the best from me.
Oops, that's not "unkwnown", I am known! This is Giulio....
Damn typos!
Ever hopeful for your recovery!
Dr. Dehning,
I'm really happy to hear that they've found the cause of all this! I pray the procedure goes well and that you have a speedy, steady recovery so that you can be shooting hoops again soon!
Good luck. Keep us posted. You are young. Anyone younger than I is young.
Good luck. Keep us posted. Anyone younger than I is young; you are young.
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