Can anyone hear me?

[Maclilly]

Was locked out of my account for a while. Wondering if there is a thread on the Taking Care of Maya case in Florida. Looks like a train wreck of a case for the Plaintiffs. Documentary was very one sided.

[MN-Skeptic]

For background, here's a Law & Crime article about this case -

WATCH LIVE: ‘Take Care of Maya’ trial – family faces hospital in court for allegedly driving the mother to suicide

A Florida family is facing off against a hospital in court, saying staff callously dismissed a teenage girl’s debilitating condition and falsely claimed the mother was making it up.

According to the complaint from Pinellas County, the mother, Beata Kowalski, died by suicide because of the turmoil that the hospital created. State authorities had had her daughter in the custody of the hospital for more than three months.

“Defendants imprisoned Maya at [Johns Hopkins All Children’s Hospital in St. Petersburg] with no legal justification,” the lawsuit said.

The hospital denies allegations.

Beata’s widower, Jack Kowalski, filed the lawsuit. The complaint said their daughter, Maya Kowalski, showed signs of a debilitating condition called complex regional pain syndrome since 2015 when she was 9.

More at the link above.

[Tiredretiredlawyer]

That is a most unusual case. Court TV is carrying the trial on TV.

[RVInit]

I was diagnosed with CRPS more than 20 years ago. it is an extreme nerve pain condition. It is so rare that most pain management doctors will go through their entire career never once having a patient present with this condition. It is entirely within my experience that most doctors have never heard of it. When pain specialists rarely treat it, how would you expect any non-specialist to recognize this condition or believe a patient when they describe their symptoms. Even the Mayo Clinic website somewhat misrepresents this condition. There are two related conditions, RSD and CRPS. In the old days everyone who had either one would be diagnosed with RSD. On the Mayo Clinic they wrongly describe the symptoms of RSD as being CRPS. The main differences are severity of the pain, RSD sometimes can go into remission. CRPS is extreme, never goes into remission and so far there is no record of any patient ever being cured or "getting over it". It is a condition where nerves within a region of the body constantly send pain signal to the brain, nonstop. Every second of every day and every second of every night. Non stop.

It used to be called the "suicide disease" before it became better understood, because without successful pain management most are driven to suicide. I remember years ago when "Dr Death" was helping people end their lives, I now believe that many of them were suffering from either MS or CRPS, probably undiagnosed. There is no other condition that any person could have that would come close to helping any non suffering person from having any clue as to what a CRPS sufferer is going through. I haven't been following the case because part of how I maintain a somewhat reasonable life experience I have to constantly keep my mind focused on other things. Even sleep is difficult because trying to empty the mind enough to fall asleep makes it difficult to not notice the pain, even with relatively good pain management. I am one of the few lucky ones that, after seeing about 6 or 7 pain management doctors that all accused me of faking pain to get pain meds, in spite of the fact that I was 40 years old when this happened to me and I had no history whatsoever of using legal or illegal drugs and my use of alcohol is so limited that if you came to visit and we wanted a beer or other drink I would have to go to the store to buy it. I finally had a very unexpected thing that happened while I was in the next pain management doctors office where all the sudden it became obvious to him that I wasn't faking my severe pain. I credit him with saving my life as I was at the point where I just didn't think I could handle it one more day. I was already making plans. And I can assure you that I have never otherwise had any suicidal tendency. I simply had had enough of severe pain that doesn't stop for one second of one day.

I believe this little girl was getting ketamine treatment. I cannot do ketamine treatment because you really can't function when you are on that treatment. Since I am single and need to be able to function on my own, not to mention now taking care of my mother, I can't take that treatment. I don't know how effective it is, but to take someone completely off any treatment that was working is simply cruel.

All I can say is that if that poor young girl was in the hospital not being treated appropriately for her CRPS that she was in agonizing hell that I doubt any family could possibly convince an entire jury that it is actually a real thing. It's a hell beyond belief.

here is the only place where you can actually find truly accurate information about CRPS.

https://rsds.org/living-with-crps/definition-of-crps/

Here is the McGill pain scale which compares pain and makes a note that CRPS is the most severe pain known. Keep in mind that many of the pain conditions that are compared are not permanent, 24/7/365 for the rest of your life, whereas CRPS is permanent and not intermittent in any way. As painful as amputation without anesthesia or childbirth is, they both go away at some point. Unless the person develops CRPS as a result. CRPS often occurs after surgery, which is what happened to me. I went into the hospital with no pain and woke up in the recovery room with severe nerve pain which has never stopped.

https://www.burningnightscrps.org/crps/ ... ain-scale/

[Kriselda Gray]

Damn.

I am so sorry you're having to deal with that! Makes my problems seem utterly trivial.

[Uninformed]

Good grief how debilitating, not something I would have expected as you are always of such a kind and thoughtful disposition on the forum - I get grumpy when I get a headache.

[AndyinPA]

So sorry you have had to live with this for so long and have no chance it will ever go away. That sucks.

[RVInit]

I appreciate the kind thoughts and statements.

I was meaning more to cast light on what this poor young girl experiences and how much she really needs compassion and proper care. Having treatment for severe pain just ripped right out from underneath you is just a level of cruelty that I can hardly express.

Because I'm not following it I don't know their reasons but before you just rip pain management from someone you should be weaned off and then if they thought a more appropriate treatment was necessary then for goodness' sake it should have been provided. And they should have at least considered the possibility that she really does have a diagnosis of CRPS. Alas, I can tell you from my experience when I have had surgery I have to sneak my pain management into the hospital and take it on the sly because I have never had adequate pain management even when my doctor reached out to the surgeon ahead of time to discuss what CRPS is, why I need to have adequate pain management, and why it needs to be consistently administered.

I do think this girl, from the little I did read, suffered cruelly during her stay in the hospital. And ketamine is very much a normal treatment for CRPS so the hospital claiming it was not necessary or appropriate is definitely not true to my 20+ years of experience.

[pipistrelle]

I credit him with saving my life as I was at the point where I just didn't think I could handle it one more day. I was already making plans. And I can assure you that I have never otherwise had any suicidal tendency. I simply had had enough of severe pain that doesn't stop for one second of one day.

I don't have your condition but can relate to this in part. I've developed searing nerve pain in my glutes and leg so it's painful to sit, stand, walk, and lie down (at first). Nothing has helped so far. It's getting impossible to work or do anything. I don't see that I can continue to exist like this, but not naturally suicidal. If I thought there was hope for improvement soon, that would make a difference. But it gets worse.

[RVInit]

I credit him with saving my life as I was at the point where I just didn't think I could handle it one more day. I was already making plans. And I can assure you that I have never otherwise had any suicidal tendency. I simply had had enough of severe pain that doesn't stop for one second of one day.

I don't have your condition but can relate to this in part. I've developed searing nerve pain in my glutes and leg so it's painful to sit, stand, walk, and lie down (at first). Nothing has helped so far. It's getting impossible to work or do anything. I don't see that I can continue to exist like this, but not naturally suicidal. If I thought there was hope for improvement soon, that would make a difference. But it gets worse.

I am so sorry. I sent a PM, I hope that might at least be a start of something.

[Suranis]

I'm really sorry to hear about all your pain.

[Tiredretiredlawyer]

Pipi annd RV-

[Annrc]

Neuropathy is no fun. Been there doing that. My heart goes out to you both, Pipi and RV. And…..that poor young lady. What is wrong with the medical community that they allow so much pain.

[bill_g]

It's on Mrs list of ills. Sympathetic nerve distrophy / neuropathy. IE: an injury over here may cause severe pain other there. She describes it as burning. And it took forever to find a doctor that (A) believed her, and (B) chased a treatment. So far nothing has worked well. We've never tried ketamine.

Thank you for the insight RV. I'd offer big hugs, but I suspect they would hurt more they would comfort. But know I am grateful.

[Foggy]

I just hate it when people here are suffering. Sometimes I feel like I have nothing useful to say, so I don't say anything. But I read every word, and I have no idea how to help (and tbh, I have struggles too also).

If'n I could pull it off, I'd make a rule that nobody here can go on hospice, or break three ribs, or suffer needless pain, or get any older. I'd put it right smack in the middle of the Rules and I'd make everybody read it and stop getting old and creaky.

Yeah, you in the back of the room. You, too also. Read it and do what I tell you.

Hmm.

I'm stumped.

[Tiredretiredlawyer]

[Maclilly]

Thank you Foggy for getting my account activated. Got locked out of my maclilly accounts right after posting this.

I ask about the civil trial cause my pain psychiatrist told me about the documentary and the doc in Monterrey. I’ve been on ket and have been doing 5 hour infusions for 2 years now. It’s the only thing that’s given me the ability to function and I’ve tried all the usual meds for neuropathy. I also get nasal spray for use between infusions. My insurance decided they aren’t covering these anymore so last one was 3 weeks ago and I’m retiring November 15. Can’t work without them and am not going to work solely to pay for them.

I didn’t find a thread on the trial so was wondering what others’ take was on it if anyone is watching. I’ve been a paralegal 40 years and been watching the trial. Plaintiff Counsel appears to be struggling. I don’t see it going well for the family. I’ve also been a CASA or otherwise known as VGAL for kids in foster so do know the public wouldn’t know all the facts in the documentary. I have had to terminate parents and had to fight to return kids to their parents when CPS wanted termination of parental rights in 2 of my cases which were not proper. I did reunite those two families so I know CPS can make mistakes.

I will try my hand at starting a thread on this case. I find it interesting and comments on Facebook or YouTube are mostly unhinged by people with no legal knowledge and have their own agenda.

I know what living with chronic pain is like and am sorry for those who’ve experienced the same.

[RVInit]

I have not wanted to watch the documentary on Maya because I thought it would be too triggering for me. I suffer from PTSD from the trauma of extended untreated pain and also from how I was treated by a number of doctors while I was trying to get a solution to my pain problem or figure out what the hell happened to me and how could i wake up from a seemingly successful surgery with such a high level of nerve pain that will not relent, even for a moment.

I decided to start watching it to see if I can handle watching. I had a hard time at the beginning, it was somewhat triggering, but I'm 30 minutes in and OK so far. I have some initial thoughts that might be interesting to some who might be interested in this case, my initial thoughts might surprise you a little. I will post more whenever I either get to the end, or get to a part where I can't watch anymore.

My initial impression is she does not have CRPS Type II, which is what I have. Also, I am a little puzzled about how the initial symptoms she and her family described migrated into CRPS Type I, which are the symptoms that she appeared to present with in the office where the doctor diagnosed her with CRPS. I have never heard of some kind of stomach ailment or non-injury type of thing morphing into CRPS, but I have no person experience with CRPS Type I and there may be things I don't know about it at play here. I know that Type I CRPS usually starts with some type of non nerve related soft tissue injury, as opposed to CRPS Type II that begins with injury to nerve tissue. But they don't describe any injury of any type that she originally complained about, they describe stomach pain or ailment. It could very well be that "usually" is doing the heavy lifting in her particular case though, so I'm not going to say right now that I don't believe her diagnosis of CRPS Type I.

She definitely does not have CRPS Type II I can say with confidence.

[RVInit]

OK, I have now watched another 8 minutes, long enough to have seen enough of the video of Maya in the hospital to say that I do not believe she has the level of pain that CRPS Type I and I have already said by all the description she doesn't have CRPS Type II.

So. I do not believe the CRPS diagnosis at this time. I think at the beginning, because of my own personal experience with the condition and with my experience with medical professionals I was probably biased to believe the family side because they were describing pretty much my very experience. Now that I have actually heard the initial complaint, seen video of Maya from the hospital where she was NOT being treated for severe pain, I will explain more fully later why I don't believe she has wither version of CRPS. I also don't believe she has severe pain. I have some suspicion that Munchausen by proxy may very well be what was going on here. Or at least between CRPS and Munchausen by proxy I think the latter is more likely based on what I have observed about myself and others who really truly do experience severe unrelenting nerve pain. She simply does not appear that way. She is very relaxed in that hospital bed, playing with dolls, not writhing or rolling around or grimacing as a person who is in severe untreated pain would be.

I will explain WHY people "writhe", "roll around", "sway from side to side", and do other things like that when they are in severe pain that is not adequately treated. I will do that when I finish feeding Mom.

[Maclilly]

That's kind of my impression as well. I do not have CRPS but have been through the ringer in trying to get a diagnosis. Have had a number of them that were then ruled out. Most likely is neuropathy or Ehlers Danlos Type 1 or 2. Mild. My daughter has a worse case, it is genetic and she is going to go through a second surgery in December as a result of mast cell/EDS. I watched this doc and feel like there is some psychological issue going on as well. There is adolescent CRPS but I am not knowledgeable enough about it to make a judgment but the hearing is bringing out some concerning things. Wish I could respond timely but my posts are being held up for moderation

[pipistrelle]

I’m always trying to find a position that takes pressure off the nerve.

I wondered about proxy.

[AndyinPA]

Interesting what I'm learning about nerve pain here. I have nerve pain, constant, in my jaw from TMJ surgery almost 30 years ago. The one thing I know is it never quits. I gave up trying to find relief years ago.

[RVInit]

Interesting what I'm learning about nerve pain here. I have nerve pain, constant, in my jaw from TMJ surgery almost 30 years ago. The one thing I know is it never quits. I gave up trying to find relief years ago.

CRPS is a type of nerve pain, but just because a person has nerve pain does not mean they have CRPS, even if your nerve pain has lasted a long time. For instance, I can tell you don't have CRPS because you have "given up" finding a solution and are living with it. The reason that CRPS sufferers that do not get treatment eventually commit suicide is because CRPS is a level of pain that you CANNOT STAND. I don't mean you THINK you can't stand. I mean YOU. CAN'T. STAND. IT.

If you are "standing it, thank goodness you don't have CRPS. That dow NOT mean that you don't deserve every bit of compassion for what you ARE suffering. People who have "lesser level" of nerve pain are still suffering and deserve compassion.

[AndyinPA]

I didn't mean I thought I might have it. I don't think that. My jaw, teeth, and tongue all feel as if they are being forever squeezed in a vice. Some days I want to scream; other days it fades a bit in the background, but it's always there. I don't even complain about it to anyone, except when it gets me into tears. But I've had dentists who have told me they don't believe TMJ issues exist, so I understand the frustration of not being believed.

[RVInit]

I didn't mean I thought I might have it. I don't think that. My jaw, teeth, and tongue all feel as if they are being forever squeezed in a vice. Some days I want to scream; other days it fades a bit in the background, but it's always there. I don't even complain about it to anyone, except when it gets me into tears. But I've had dentists who have told me they don't believe TMJ issues exist, so I understand the frustration of not being believed.

I sometimes do not express myself very well. I didn't mean to imply that YOU thought you might have it. I was trying to express that MANY people who have nerve pain when they hear about CRPS might think they have it. And that's probably because ANY level of nerve pain is very very very painful and the person is genuinely suffering as I totally believe that you are.

And also believe that you have experienced doctors trying to wave it away as in your head, not real, psychosomatic, etc. That is in some ways just as bad as the actual pain experience. And so very frustrating. Because without a doctor believing your experience, there is NO hope. I am so sorry you have had to just live with it. While I feel something like "why me, I am not a bad person and didn't deserve this" I also think that I am very lucky that something that happened by chance in the office of my "last chance" doctor turned everything around for me and eventually I ended up with getting a level of pain management that is in no way perfect but it's good enough for me to build some kind of life again. I consider myself lucky.