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.