Saturday, March 10, 2018

A diagnosis to beat all diagnoses

Many weeks ago I put my medical case up on an internet website that hires medical detectives to figure out hard-to-solve cases. The site is called "CrowdMed". It costs money, they actually pay the medical detectives, and award those who have actually solved the case. I figured I had not a lot to loose, since going to the Mayo clinic would be much more expensive, I thought this could be a way to possibly get answers/a diagnosis without going there.

Shortly after putting up my case, I met Dr. Frischman, and started treatments with him. At first he helped so tremendously that I decided to take down my case from CrowdMed to save the money- the first week is a free trial period. I am very concerned about how much it is costing us to find a working diagnosis and treatment plan.

My first treatment with Dr. Frischman was so amazing, I was practically out of pain. But then the pain slipped back in a few days later. The treatments I've had since then didn't show the same results, and I am in very regular pain again, with hardly any change. In the meantime, the CrowdMed people didn't actually take down my case as I had asked. So also in the meantime, a medical detective offered up a diagnosis. And you know what? I think it's *right*. How crazy is that?

I had never heard of it. It's called Splanchnoptosis. Yeah, read that slowly... the last "p" is silent... pronounced "splank-no-tosis".

I had to look it up, obviously. Check out THIS website. I think that is what is happening in my belly- that because of the weakened stomach wall muscle- and half of it gone to NF, and a mesh & clips holding it together- the organs, together, in my abdomen went south. It is relieved when I lie down because they can go back into place. It is hard to see sometimes on a CT scan because if all the organs fall together, it looks normal still. It is also temporarily relieved by a strong elastic hernia belt, even though I don't have a hernia, because the elastic can place the organs higher, temporarily. I find myself very uncomfortable in a few hours, though, and even nauseous after wearing it, because I don't have a hernia, and the pressing on my organs isn't a viable long-term solution.

If you go to that website I suggested (here), you will see the thing that clinched it for me...
One of the symptoms is the existence of a "mass" in the abdomen, which changes places. I have that, but I didn't write it on my CrowdMed case because I didn't know of it at the time. The medical detective guessed the diagnosis even without that information. That was really eye-opening for me. Makes me really think that is the diagnosis we've been looking for. Now the question is... what to do about it. Most of the internet sites say surgery is the treatment. And I may need surgery. But for me, it's very high risk, to do a multi-organ surgery, when I have a huge mesh & clips in my stomach wall, and lots of adhesions (the danger is profuse bleeding). But living the way I am living, with almost constant pain and very sedentary is not a long term solution, by far. I have lost much of my freedom since September. I can barely do anything. So would I go for surgery? Yes, I think I would. I need to take the chance that I could get my life back. BUT, and this is a big BUT, I am going to have more treatments with Dr. Frischman, and see it through, because he completely believes that we can take care of this disorder with manual treatments, dietary changes and Chinese medicines. I am completely committed to seeing that through, but until when? He is intimately familiar with Splanchnoptosis; a family member of his had it (but wasn't treated for it, she passed away, but not from this disorder).

Will I go to the Mayo clinic? To have the diagnosis verified? To do more testing and see if there is a different diagnosis in there? Or possibly more than one disorder going on? My feeling is.... maybe yes. (I am very concerned about finances, though). I have to see how these next three weeks go. But I think it'll take longer than that with Dr. Frischman's treatments to know if they are working. I think I just need to chill out a bit and see how things go with the treatments and Chinese medicines. I have to pray that answers will come to me at the right times.

I am starting to feel less confused, though, with this medical detective's diagnosis.
What do you guys think? I really value your feedback! It's best if you can leave it on the blog itself instead of Facebook, that way I can keep track of the comments better. Thanks.


  1. I just have questions. Who made this diagnosis and what are her qualifications? If you do have surgery, where will you have it done and by which surgical team? Who treated Dr. F's relative? Consider talking to the relative as well as the physician who treated her.

  2. I can't see betting my life on traditional Chinese medicine, since its core has been shown to be incorrect. Not that there are not valuable things in it, but you have to sift out the things that don't work. I think China's recent Nobel prize winner in medicine did just that. Here's a chapter from a reference book on Chinese medicine which from what I understand uses the normal standards of evidence of historians and of scientists.

    1. I'm going to stress again that the people who really know traditional Chinese medicine don't consider it to be a correct description of the human body.

  3. First let me say I’ve been reading your blog updates and sometimes feel overwhelmed with all that you’ve gone through as I have not yet had my hernia repaired after having NF but need to...just need to lose weight. But I’m still concerned about having surgery again after all I’ve gone through and reading about all you’ve gone through! I would say the diagnosis does have some promise but would definitely get a 2nd or even 3rd opinion about the diagnosis and especially about ALL that surgery would entail. My heart aches for you with all of the pain you’ve been in...that’s one reason I don’t want to have surgery because I am not having pain at all and pretty much feel the way I did prior to NF...keeping you in thought and prayer always!

  4. Hi Sare, why don't you ask Dr. F for a guesstimated date of when he would be finished with your treatments and when he would expect you to be better... and after seeing that through, if necessary, go to the next thing. His approach may take more time than you like, but he seems to have a good track record and he says he can help you... I would let him finish his job before moving on.
    Miss you, Love, Dev

  5. keep mayo clinic in. can you get a CT scan or whatever while you are laying down then standing up?

  6. Visceroptosis - Wikipedia and check other sites

  7. Wow. Trying to process this new diagnosis. Sounds logical on the face of it. So, if that was the diagnosis-why did Dr Frischman's first treatment help so much?

  8. I think the diagnosis sounds reasonable but would definitely want it verified by another opinion. The Mayo Clinic does sound like a good thing - if you can go there, they can verify that diagnosis, and/or suggest another one. But I hear you that it will be expensive :-( I am thinking of you and have hope for you!