Quote:
Originally Posted by Neurochic
Hi
Were you referring to Prof Solomon S Liao at UCI, Irvine as the person who headed the team who carried out your ketamine coma procedure? It would be useful to know as there may be people here who would like to get in touch with him (or would like to ask their own physicians to get in touch with him) for more information.
It would be interesting to be able to hear more about the particular protocol that was used by the team who performed the treatment. Since the FDA has previously refused to permit ketamine induced coma procedures for CRPS patients in the USA, I'm sure everyone will be excited to know how the hospital managed to get the regulatory and ethical approvals to perform the treatment.
There are also lots of practical things that it would be really interesting to know more about such as how long you were placed in the induced coma, what dosages of ketamine were used, what it was like to be artificially ventilated and any problems that gave you afterwards, how the medical team mitigated the sort of risks that have arisen in the previous experimental coma procedures in Mexico and Germany (like serious infection) etc.
Since most patients in the US currently seem to have to fight very hard with their insurance companies to get approval for sub-anaesthetic ketamine infusion treatments (its still regarded by most as experimental), it would be useful to know if you had an insurer involved and what their view was.
Is the doctor who carried out your treatment going to publish a case study with details of what he did? I'm sure this would be really interesting to the whole CRPS patient and research community so it would be good to when and where it might appear.
I'm glad you seem to have had such positive benefits and look forward to hearing more about the treatment.
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Let me tackle a few of your questions now and the rest once I can ensure I'm providing the correct information by checking with my medical team. My laptop battery is also fading fast and I don't have the cord with me so Ill answer as many of your questions as I can before she dies.
1) Yes I am referring to Dr. Solomon S Liao at UCI, Irvine as the doctor who heads up and founded the Palliative Care Clinic at UCI Irvine Medical Center in Orange. Dr. Liao himself did not perform the procedure although he headed up the team, was, and remains active in my care. He instead hired new Palliative Care doctors that had first hand experience doing this procedure.
2)I have to tell you I'm not your average patient, I know my complex conditions and every aspect of my treatments or potential treatments better than most doctors with 20 years experience. In fact at home I even manage my port-a-cath (like a permanent IV) and IV medications myself (which help treat my severe Dysautonomia) so originally I brought up the prospect of this procedure as a future option 2 1/2 years ago.
Once it was clear we had run out of other options we again discussed the procedure and knew, at least for myself, it was not only the only option left but my best chance at living a normal life. After that it still took the hospital a year and ahalf to okay it and even then it took some doing.
2) The protocol they desired to use on me was deep sedation and extremely high doses of Ketamine over 5 days. Thanks to my incredibly high tolerance to medication however it took them 5 days just attempting to sedate me in the end having no choice but to resort to propofol. Upon the insistence of the ICU doctor and for my own safety a breathing tube was placed.
There is very little I remember from that time, just bits and pieces here and there.
4) I don't know about the FDA but part of it may have been that technically CRPS is not my diagnosis.
Now instead and using Ketamine to put me into a coma we used other drugs to put me into a coma and then administered Ketamine *wink, wink0
Apparently that distinction is a big one
If its okay I was answer the rest of your questions in the morning.