Quote:
Originally Posted by Neurochic
From the info you have given us so far, I'm not sure how helpful your post is to people with CRPS.
You say that you don't have a diagnosis of CRPS. That is the particular condition that people on this board are dealing with and is what they would be presenting with when they are discussing any potential treatment with any doctor. I am sure you are well versed in managing your own condition - many people who post here are very clued up on CRPS and its pretty normal for us to routinely have to tell even specialists about our condition and the potential treatments out there.
For a doctor to perform a non-approved high-risk medical procedure involving a medically induced coma on a CRPS patient on the pretext of dealing with some other medical condition would probably be at best regarded as unethical. I am guessing that was what your "wink, wink" reference meant? I'm not sure how placing a CRPS patient in a coma using a different anaesthetic drug and then infusing ketamine would get a doctor round the FDA or a hospital ethics committee. There would need to be a justifiable medical reason for placing a patient into a coma and even severe CRPS definitely wouldn't be a justification.
Are you actually sure you you were actually placed in a coma? It may have been deep sedation but if you were truly placed in a medically induced coma, you would have to have been incubated and ventilated because the body is physically unable to perform this function in an induced coma state. All of the body's needs have to met artificially. I ask because the way you described the process and the breathing intervention suggests deep sedation and not a coma.
It would be interesting for you to come back provide more information. I guess that since the particular doctor who provided this procedure has an email address that is publicly available online, people could contact him direct if you don't come back and post more information.
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Sorry for my late responce; I've been in the midst of a move and things have been crazy.
I'd like to clarify somethings, especially after speaking with my doctors about the particulars of my procedure but first I want to clarify my diagnosis. My pain was the product of both a genetic condition and an injury that triggered CRPS in my legs, most severely my left leg.
Although it took the hospital a year and a half to approve it they finally did approve my procedure. The original intention was to perform the procedure under deep sedation in the ICU over a 5 day period. The ICU attending was only comfortable attempting deep sedation if he first placed a breathing tube and before allowing everything to proceed wanted me to verbally tell him I understood the risks (as the ICU attending I think he just needed to know that it was my unpressured decision to have this procedure and that I understood fully any and all risks so he felt comfortable proceeding). That was the plan, however, because I have such an incredible tolerance to medications after attempting to sedate me (and failing) for 5 days the decision was made to place me in a coma with proprofol (an anesthetic).
Dr. Liao, head of the palliative care clinic, actually hired doctors and a pharmacist that have experience in performing this procedure which I'm sure was a major factor in the hospital feeling comfortable in allowing this procedure to take place. They are the members of the palliative care team who did the procedure.
The Ketamine was started at a lower dose and steadily increased during that 5 day period. Its my understanding that, due to my extreme tolerance to meds a higher dose of ketamine was required then would be for the average patient. The almost 700 mg morphine I took in an average day (that amount includes PRN doses) was stopped and I was started on IV fentanyl as a replacement to the morphine. That was then tappered down VERY slowly over a longer (maybe 7-9 days, I don't exactly remember) period until all I needed was a fentanyl patch of which my current dose is 35 mg changed every 72 hours.
I still remember the first time my mom walked into the room and I mouthed to her (my voice was still very raspy and weak from the breathing tube) "no pain". It was the first time in my life I don't remember being in pain and the first time in 8 years my leg pain was below a 7.
Today the vast majority of the time I am still a 0 with occasional pain spikes of about 4. I continue taking daily ketamine "maintenance" doses and have a 10 mg every 4 hrs PRN (as needed) for those occasional spikes.
I thought my biggest fear going into the procedure was the possibility of hallucinations but I realized that day my true biggest fear was that it wouldn't work. Although I did experience hallucinations it was worth it a thousand times over. And even if I were to wake up next month and all the pain return it would still have been worth it just to experience these past few weeks without pain.
Now to answer questions about insurance. The procedure itself was covered under "major medical" due to the hospitalization so there were no issues there. However, though my insurance (a PPO), has been willing to cover ketamine for sometime, last month when we received a letter stating they would no longer cover the drug past September. Our hope is the MediCal will be willing to or Medicare (which for me starts in October) will be willing to. In the meantime the plan, if needed, is for me to come in for weekly ketamine infusions as my maintenance dose.