Maya's Ketamine Treatments Were NOT Effective - Kowalski vs JHACH

I am a long time CRPS patient, and have had experience with effective and ineffective pain management treatment.

I would like to share what it is like to experience BOTH of those situations. Maya's family's own story in their own words betray the reality that her ketamine treatments were NOT effective, regardless of their protestations and Dr Hanna's insistance that the roller coaster from zero to level 10 pain was because of "flares... she's having flares".

To start with, chronic pain is managed much differently than acute pain. Here in the USA acute pain is typically treateed with what basically would be considered an "overdose" of an opioid.

What do I mean by that? Simply that because the pain is expected to be short lived, a doctor or dentist will prescribe a medication that will not only bring your pain level down to ZERO, but might also make you a little bit high or euphoric.

Think if it this way. Forget the pain scale for a moment, and just think in terms of units of pain. You go to the dentist and you get wisdom teeth pulled. Afterwards your dentist gives you a prescription for Percoset. Only about 6 tablets, because your pain is going to last a day or two at most.

So, your actual pain UNITS are, let's say 4. But Percoset is a drug that will reduce 5 units of pain. What happens to that extra unit of pain reduction that is over and above the 4 units that you need? Well, your brain has something fun to do with it - you experience this as a bit of euphoria.

It's OK in this case because you have only 6 pills, it's an acute situation. It's not usually considered dangerous for a person to experience a little bit of euphoria for one or two days, unless you are particularly prone to addiction.

But for a chronic pain situation, that is whole different ball game. If you have chronic pain units of 4 and take a medication that relieves 5 units of pain, after a few weeks, or maybe even sooner, your brain will adjust to that, and that medication will no longer give you enough pain relief. Then you need more. But then THAT amount won't suffice, and then you will need even MORE.

So, chronic pain is handled much differently. The idea of pain management is just what it says - management. It's not about getting your pain level to zero, it's about trying to establish a level that you can live with. A level at which you are able to function and have a fairly decent quality of life.

When my condition first started I had never heard of CRPS, my doctor had never diagnosed or treated anyone with this condition, and there was no such thing as ketamine clinics. It's a rare condition, and many pain management doctors go through their entire career never having run into a patient with this condition. And yet, that doctor DID properly diagnose me and DID find an effective regimen. It's just that the first regimen was not effective. But when I reported that to him, we tried something different until we found the one that works.

This is not what I would call a failure. Show me two different CRPS patients and I will show you two people who are on different combination of pain management treatments. It's a matter of doctor and patient working together to discover which combination will work best for the patient.

It's a straw man argument to talk about "experts" in CRPS and the defense needs to view it that way to combat this constant drone of "are you an expert on CRPS?" with every doctor that treated Maya in any way. They don't need to be an expert in CRPS to ask questions and order diagnostic testing. What they DO need? A patient or patient rep that is answering their questions honestly, which is NOT what Jack or Beata did. I answered my non expert in CRPS doctor's questions honestly, and he found an effective strategy to manage my pain. He would tell you to this day that he is not an "expert" in CRPS. I now live somewhere else, and use a doctor that was recommended, he doesn't call himself an expert in CRPS either. But I travel 80 miles one way to see him because - effective.

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Here is my initial experience with ineffective pain management.

When I first presented, the pain level was so intense and I was so overwhelmed with pain that I could not really even properly identify whether what I was feeling was burning, throbbing, aching, stabbing. That may be difficult for people who never experienced intensely severe pain, but many CRPS patients in my group said they had the same experience, that the pain level had to be reduced in order to be able to accurately say what "type" of pain we are having. That is common in severe, overwhelming pain. So, my doctor did the best he could, and I have no complaints about it.

Given all the details, he thought what I was experiencing was likely some type of nerve pain. So, he went with an opioid to start with.

I was prescribed 20 mg of a common pain medication listed for moderate to severe pain, and the prescription allowed me to take 3 per day, which is one every 8 hours. I was instructed to stay on the schedule, if I missed one take it immediately and then still take the next one at the normal time because you can't just keep stretching out the amount of time between doses or the pain won't get under control.

To understand some of my experience you have to know I got this condition after a hip replacement surgery. Almost everyone in my support group got this after a surgery, and most of them - hip replacement. Back in the days when I got mine they used to wrap you up like a mummy after the surgery, very tightly. They don't do this anymore because of a correlation between being wrapped tightly after an injury and...CRPS. Most of the folks that were wrapped like this after a hip surgery are now dead (typical age for a hip replacement is... OLD), but I had this surgery early in my life due my hip having been severely damaged in an accident.

My incision is at the back of the hip, basically on the buttock. So, sitting down is extremely painful. Under my current pain management I can sit for periods of time, but have to stand up often.

Here is my initial ineffective pain management:

6 AM - I am at level 10 pain because the last night's dose has worn off. Take first dose

6:45 - (it takes about 45 minutes for these medications to take effect. pain is getting under control, I'm at about a level 4. That isn't good, but after spending a great deal of time at 10, I'm happy.

7 AM - by this time it's working well, I am at about a 3. I am able to focus on other things and get about my daily activities. I dont' feel great,

8AM - I am at work now, and my work station ws modified so I can stand and work. My pain is under control at about a level 3 during the time that the pain medication is at a therapeutic level, but sitting is impossible. As long as I am standing up, I can live with the level of pain I'm having

12:00 PM - The pain medication has worn off and no longer at a fully therapeutic level. Pain level is around a 6 or 7 and I'm having a really hard time doing any work, or concentrating on anything.

1 PM - by this time pain level is at a 10, I can;t stand it. I am telling myself just need to get through the next 5 minutes. At some point just need to ge through the next 3 minutes or 2 minutes or 1 minute. I go outside and walk, walk walk. *

2 PM - Finally I can take the 2nd dose, but it's going to be 45 minutes before it kicks in. So I continue to suffer, but at least I know that relief is coming in less than an hour. I keep walking. Thankfully I'm a biologist and always have some kind of field work I can do, so going outside walking and standing is doable.

2:45 finally down to a reasonable level, I can get some more work done, but I feel really behind in my work because of the amount of time I was unable to focus on anything.

6 PM I'm home, family is sitting around the table. I'm standing at the counter eating because I can't sit down. I won't go into the gory details of trying to have a family life and relationship with my (then) wife ** They can sit and eat, sit and watch tv, go to a restaurant, go to a movie, etc. I can stand up and I can walk around.

8 PM by this time the medication has worn off, I am now at a level of pain that is distracting, can't carry on a conversation, can't read to my kids, but I can go outside and walk and wait for 10 PM when I can finally take a dose

10 PM - take my 3rd dose

10:45 starting to feel better.

4 AM - wide awake, level 10 pain , it's 2 hours until I can take the next dose and another 45 minutes before it kicks in. Time for a walk.

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Here is what EFFECTIVE pain management looks like.

First the pain has to get under enough control so that you can do the other techniques. Right now my doctor is just trying to get the pain under control, we aren't even thinking about what the final whole pain management regimen is going to be. And don't even know if my nerves are just taking longer to heal than normal, and there is no suspicion at this point that I have some kind of permanent condition.

2 PM - Immediately take a dose because I just went to the pharmacy after a doctor visit where I told him I can't continue living like this any more, we need to find something more effective.

2:45 my pain level is down to 2. I am a grown ass man and in tears because I haven' had this kind of relief in months.

6 PM. I sit at the table with my family because I have already figured out that I can sit for periods of time as long as I get up for a while.

10PM - My pain level has gotten up to about a 4 by this time. Take 2nd dose

10:45 back down to about level 2

4 AM still asleep

6AM - 2nd dose I'm at about a 4 at the time I take this dose

6:45 back to level 2

8 AM - I am noticing everyone in my office acting really strange - they keep looking at me, they seem really unusualy upbeat and even slapping me on the back. I think they are all nuts or someone put something in the coffee.

I go into the restroom and it's been a long time since I looked up at a mirror because I was so aware of how bad I looked, but for some reason I look up and see myself. And almost lose it again when I see a perosn that could be around 40 years old looking back. Less than 24 hours after changing medication and only 3 doses and I already am looking like a normal human being again instead of a hollowed out, dark circles under the eyes, haggard face, slumped shoulders kind of guy.

This is what effective pain amagement looks like. Steady pain relief that fluctuates within a short range, but stays within that range around the clock. The times it gets out of control only being when you forget the time and then realize the pain is at an 8 and damn, I was so busy and so concentrated on other things that I let 2 hours go by beyond time to take the next dose. That happens. But effective pain management should keep you in a short range all the time.

Ineffective pain management is a roller coast swinging from level 3 to 8 to 10 several times a day. Or even several times a week, or every two weeks.

Maya had ineffective pain management. Her pain was not under control, her pain levels were not steady within a relatively short range. These doctors had this family bamboozled, and they insist that because Maya intermittently experience hallucinations, high as a kite, and some pain relief that somehow this equated to effective pain management.

But if she is screaming in pain two weeks later and they are desperately rushing her to Dr Hanna to get another "fix" - she was on a roller coaster by their own admission. By. Their. Own. Admission. she was on a rollercoaster. And that is NOT effective pain management.

That is recreational drug use if I ever saw it. Effectively.

It's a con job Dr K and Dr Hanna are pulling on credulous people, some of whom seem to "get off" on the idea that they have a rare condition - posting about it in almost a bragging fashion. Beata's blog did not sound like she was "informing everyone at the same time so she didn't have to tell them individually". She could write an email and include a premade contact list for that. She was putting this on the INTERNET. And it sounded more like her bragging about how bad off Maya was than informing concerned friends.

* Turns out that nerve pain is quite different than muscle pain. When a muscle is sore it hurts to move it. We saw an example of this in the Netflix show where Maya is in Dr Kirkpatrick's office and she's struggling and wincing trying to raise her arm. But CRPS is not muscle pain, it's nerve pain.

Dr Kirkpatrick know this, of course, but he has a $10K ketamine treatment to sell and a customer that he can tell is aching for a "rare condition diagnosis" because he has learned to smell these people from a mile away. They are his bread and butter and pay for his and his wife's matching Mercedes and their mansion on a canal. The only conditions he can treat with ketamine are depression and othe psych conditions....and CRPS. He diagnosis a shit ton of people with CRPS.

So, with nerve pain and some other types of pain, it actually helps to move. You know this instictively when you stub your toe. You limp around on one foot and one heel. When you stop, your brain is no longer busy with making your muscles move, so it can focus on the pain and you feel worse, so you limp around some more until the throbbing stops. Football players know this too. When they get hit hard they will roll around on the ground until the pain stops. So, I walked. Miles and miles. This is what i did during the time before I found a doctor that was willing to believe my pain situation, so I already know this trick.

** Marriages rarely survive CRPS.