[sparky4christ]

The palliative care team (run by Dr Liao the doctors are all AMAZING) at UCI Hospital in Orange JUST performed a "ketamine coma" on me. I am in fact still in the hospital about to be discharged.

I was on over 700 mg morphine total a day with a pain level that, despite that, was never below a 7 and was almost always a 8 or 9. As of now, following the procedure, I am currently a 0 and remain that way the majority of the time with my worst pain spikes being a 4.

The coma was by no means the first choice of treatment but for me we were out of options. The palliative team uses Ketamine in many ways including as a add on to traditional pain medications in small doses to make it more effective.

It took the hospital a year and a half to approve the procedure (the hospital itself not the palliative team) and I believe I am the first to undergo the procedure here. My mind has never been so clear or so sharp nor can I even begin to explain what its like to have no pain after a lifetime spent in pain.

I continue to take ketamine (oral) and will continue to do so at home but other than that I am off all narcotics except for a 25 mg fentanyl patch placed every 72 hrs. This Palliative Care team (who's goal and focus is not just treating the pain but the whole patient and all that comes along with chronic pain- like depression) is worth the drive if you live ANYWHERE in southern CA. Its so refreshing to have doctors who understand its the pain that causes the depression and other issues not the other way around.

It isn't for everybody, this procedure, and you really have to weigh the risks but for me this was and is life-changing. For the first time I realize I will actually be able to attend college, my dream.

It may not work for everyone, please don't take my experience as a promise of what's to be expected and I don't know what tomorrow will hold but if I were to wake up next month in just as much pain as before I would still have consider this procedure a success.

If you have any specific questions **

[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.

I thought the FDA banned medically induced comas of more than 48hrs.

[Neurochic]

Originally Posted by Kevscar

I thought the FDA banned medically induced comas of more than 48hrs.

Ketamine has been FDA approved for quite a number of years for 2 day use in the USA but only when the patient is awake, ie not in a coma. There is no FDA approval for ketamine induced coma for CRPS treatment for any period of time in the USA.

That's why I asked the OP about the approval process because it would be a key piece of information in understanding how this coma treatment was able to take place.

[sparky4christ]

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.

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.

[ALASKA MIKE]

I hope it works for you. I guess time will tell.

Any hallucinations?

If you dont mind me asking, how much fentanyl patches were you on before the procedure?

Originally Posted by sparky4christ

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.

[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.

[sparky4christ]

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.

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.

[daniella]

Original poster something that confuses me is when a person on the board posts for the first time and has had a treatment with a specific doctor and now is pain free. It is one thing if you are a member for awhile and then found treatment but what would make a person come here after they are doing good? So I guess that is my question since this is your first post and why now did you come on the boards to say you have 0 pain but in the past never were on here? I am not saying you should not post because you have ever right just confuses me. I am skeptical always because in the past there has been issues of people who I think were actually part of the doctors staff posting on here pretending to be patients.
I have researched ketamine because I was thinking at one time to have it done. There are a few doctors who deal a lot with RSD which is so key and also dosage amount. What you are stating sounds very different then what I have researched.
I am sorry if I am out of place I just don't want anyone to get taken advantage of and I am sorry OP if I am wrong in your case

[ErikaFranzi]

i just underwent a medically induced ketamine coma in an attempt to relieve my intractable trigeminal pain. I was told that I am the 10th patient to undergo this treatment at UC Irvine, and the only one being treated for trigeminal pain. In December, I had my second MVD surgery done, this time at UCI. My previous failed surgery was done at another hospital. The surgery was 100% successful, however 3 weeks after the surgery, a new pain began. This pain has grown over the months and at the time of my induced coma, was intractable 10+ pain. My neurosurgeon thinks, I believe correctly, that this pain is the result of the extensive work he had to do to correct my previous MVD and decompress 8 more compressions on more than my trigeminal nerve. The hope was that the induced coma and ketamine would give me enough relief for long enough that I could make it in at least manageable pain through the next 12 months, which is how it will be before an assessment of nerve healing or damage can be made. The hope is that my nerves will heal and in 12 months I will finally be pain free.
I went under on April 25 and came out on May 2. Over the course of the next 3 weeks, my pain went from a 0 to a steady 5/6. I am taking 5 mg of ketamine orally every 4 hours as needed. It doesn't seem to be enough to sustain the pain relief. Yesterday my pain went rapidly from my usual 5 to a 9+. I'm now awaiting a call back from my regular pain specialist as I have been discharged from the care of Dr. Liao and Dr. Capasso of UCI's Palliative Care Team.
I'm sad to say that I think this treatment didn't work for me. Oral ketamine is not helping and infusions only help while they are happening, but the pain immediately returns when the infusion stops.
I have no idea what's next for me and no one to talk to. I hoped that I could get in touch with you and at least discuss the experience that so few have had.
Please contact me.