So here I sit, no lay, while the pump beeps inside me reminding me of the four emergency room visits, fifteen visits for titration of the medicine, two catheter migrations, and three incisions including two in my back to get the catheter to stay in my spine, which it hasn't and currently is floating around my back like a buoy in a lake, non functioning.
My several complaints as to this even more sedentary lifestyle seem to fall on deaf ears. I have been basically bedridden since surgery one, and knowing how trauma to the body exacerbates the condition of a patient with MS never in my wildest dreams did I expect this incapacitated invalid state I would be in. "Write a book," "watch all the Marx Brothers Movies," was the solution from the articulate yet callous neurosurgeon, who by most likely accounts has never had to spend nine weeks and 90 percent of his day in bed while his four kids, his business, and the rest of the world continue to try to function and continue without him.
Never in my wildest dreams did I see this kind of thunder and lightening on the horizon. I was driving, working a half day, getting out in my scooter, and now I am doing nothing of the sort. The pain and mental anguish I am experiencing is a test of only the highest magnitude imaginable. Worse off, my only option is still another surgery. Either I remove the components of this machine sewn inside of me, or I allow a third back slice and another shot at a hypothetical catheter anchoring, with no guarantee it will stay inside my spine. So its either shit or shit basically, and very surreal at this point. In fact it's a nightmare.
The stitches in my back were to come out today, and as they stretch and yank and burn and pull, the spasm and spasticity go from worse to torture. Naturally the Dr called in sick, par for the course, so it looks like I get to keep these bitches in another day and the black cloud hails overhead. How can this be happening?
Naturally I researched another Dr to get another opinion, and as luck would have it she was fantastic, knew every angle of the pump, has experienced fantastic results, and out of 200 patients has had zero catheter migration. ZERO!!! What happened to me? Surgeon ineptitude? Technical anchoring catheter problems? Greek spinal rejection? What the hell is happening here? Nobody has the answer. Either way I am stuck here in bed, in pain, mentally, physically, with spasticity beyond belief, and no matter how much oral baclofen I take I am not experiencing relief. I cannot sit in a chair due to weakness and spasm, can't work, drive or do any of those things I discussed earlier, and beep beep beep goes my dis-activated pump. WTF?
There are many more details to this saga, and this is merely a synopsis. One time in the ER they were so confused and had no idea how to program the pump that I had to call the rep on my cell, who traveled 160 miles to my hospital bedside to shut it down at 2:30 in the morning after wincing in pain for 6 hours prior! Should I be responsible for my own care in an Emergency Room of Henry Ford West Bloomfield, a major Hospital?
Moral of the story thus far: Do not take Medtronics Intrathecal Baclofen surgery lightly. Do your homework, Don't panic because your symptoms are so bad. Don't rush. Find competent and informed and familiar care. Find a surgeon that has done a ton of them and a Dr who has titrated the pump for many many patients. When the new Dr saw what was in my pump she had never seen a concentration like that. What the heck she commented? Meanwhile I have made around 14 trips to the Dr who was titrating and as much as I really liked him, it was as if I was merely spinning my wheels and had no idea what was in my pump was not the proper concentration. How would I? I was relying on his expertise.
Do these things and hopefully with a little luck you wont end up like me. Nine weeks lost, worse symptoms, traumatized, incapacitated, pissed, frustrated, remorseful, dissapointed, anxious, and at times very hopeless just lying in bed, clear minded yet trapped in a body that is frozen like the Tin Man. This is Bullshit my friends. It's wrong, unfair, has stressed my family, my finances, and confused me more as to my purpose in this life. The guy in this video is a putz but its the second alarm I get to hear every half hour, a reminder of this hell and the longer road ahead:(