Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 07-09-2010, 10:52 PM #1
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Default How is bobber?

Has anyone talked to bobber?

He is truly an inspiration to me. I miss his wisdom.

Has anyone talked with him?

Kim
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AintSoBad (07-11-2010)
Old 07-10-2010, 12:22 AM #2
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Thumbs Up Ditto that!!

I too have been wondering about our Bobber!
I was fortunate to be able to talk to him on the phone a couple months ago, but have lost track of him. This was B4 he was looking into getting Ketamine I think?
If anyone knows, please update us!!
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Old 07-10-2010, 03:10 AM #3
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I'll try and reach him after a program I've got Sat. morning. I put a call into him a while back and got distracted and didn't follow up. My bad.
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Old 07-11-2010, 09:30 PM #4
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Default

Bobber, is a great guy. And an inspirational friend!

I enjoyed speaking to him, on the phone, or in PM's.

I don't think I have his email addy!

So, I'm looking forward to anyone who can contact him! MY THANKS, for just giving it a try! It's far more than worth it!
I'll certainly dig through my records as well!

Pete
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Old 07-12-2010, 10:05 AM #5
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Unhappy spoke to Bobber last night

It would be an understatement to report that Bobber is not receiving the level of care he anticipated at the leading hospital in his state. And he and his wife are beyond frustrated by the situation.

As you may recall, several months ago, a routine lumbar sympathetic block turned into a nightmare as the pain physician, in an apparent attempt to protect a friend who's surgery triggered the onset of his RSD - and towards whom Bobber bears no ill will or assigns moral blame for the outcome - attempted to thread a cathedra along one side of his spinal column to that he could first inject a placebo in hopes of hearing how warm the block was making Bobber's feet, etc. And for some now undisclosed reason this doctor chose to proceed even though fluoroscopy was (temporarily?) unavailable. The net effect was that the pain doc was working blind, and inadvertently sent the cathedra down the wrong side of the spinal column, making a mess of the nerve roots in particular and trigger immediate sciatica during the procedure, something that has not spontaneously resolved itself, as one of Bobber's subsequent physicians at the university hospital where Bobber had unilaterally found treatment, had hoped.

Bottom line, Bobber entered the university hospital in April. But instead of immediately irrigating his frayed spine with a potent anti-inflammatory while receiving an in-patient infusion of ketamine, the then treating neurologist concluded that our friend had been untruthful in claiming to had underlying CRPS, where his skin color looked quite normal while he lay supine on the bed for days on end, thank you. At least the pain doctor heard what Bobber had to say, and ordered photos pf legs after he came out of the shower; proving RSD to everyone’s satisfaction.

However, they didn’t want to do ketamine until they could continually irrigate spine with local anesthetic. Sent home with oral prednisone. Told to return June 31 for next visit to be followed by immediate hospitalization for procedure. Makes 5 hour trip on air mattress on back seat; having told pain doc. They don’t have money for hotel and assured he will be admitted. They show up on 17th and our examined apparently before medical student and/or residents. Dr. became hostile when Bobber asked about with there was a possibility of damage to already injured nerves when contrast dye pumped in under pressure to accommodate fluoroscopic imaging of spine while threading cathedra: apparently it was something the doctor didn’t want to discuss. Also refused w/o explanation to add any steroid to spinal irrigation. (Sounds like doc. had a lot of ego in play.) But because of concern for risk of infection, took Bobber off of prednisone anyhow and was told to report back tomorrow, assuming that inflammation in back would somehow magically resolve itself in the interim. But as of late last week had yet to request pre-authorization from Bobber’s insurance carrier or return his calls to confirm anticipated hospitalization. So back they drove that night, another 5 hours in great agony.

At this point, it looks like the pain doc. Is afraid to treat the spine and there’s no suggestion that any neurologists/neurosurgeons in the hospital are rushing in to assist in the treatment.

Bobber is earnestly seeking second medical opinion and does not want to return absent assurances that all open issues have been resolved for treatment, which, as of Friday, was quite clearly not the case.

He asks that everyone remember him in their prayers. And once more, please know that he is looking at your comments on the forum, he's just in no position to type himself. And that hasn't improved since the nightmare began with his spine.

Mike

ps I'm off this am for a weeklong meditation retreat and will not be in a position to either see or respond to any follow-ups in the interim. Apologies.
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