May Make Medical History on Tuesday

When my husband and I wrote the gofundme and I titled it Lifesaving Surgery for Me & Hope for Others Like Me, I hoped my journey and the knowledge I would bring back to my EDS doctor would be able to help others that have not been able to get a diagnosis or treatment. Until I was finally sitting in the German surgeon's office yesterday listening to what he saw on my CTA and what he was thinking of doing to fix my problems, did I quite understand the magnitude of this. There is no question that I need this new surgery, but all I could think about was what it could mean for others who also have the same problem down the road. If it works, I will make medical history and be published.

In the last post I mentioned that the diagnostic doctor had found when I stand that I have 0% blood flow from my renal vein to my left kidney. Even laying down, it is still severely compressed and I learned yesterday that the reason it's happening is how low my kidney sits. Because of this, my surgeon has come up with a new procedure to make a "pillow" for my left kidney. He will actually use the material that is from breast implants (yep, you read that right). At the new private clinic where my surgery will be done, there's a lot of cosmetic surgeries, which gave him the idea and the ability of having access to the material. He will secure the material underneath my kidney to keep it propped up and working properly, along with the PTFE tube graft to protect the renal vein. I will also be getting a PTFE tube graft around my iliac vein. The previous stent my vascular surgeon put in has helped blood flow, but it's still compressed 50% and positioned at an angle, which my surgeon will fix. Both surgeries on the renal vein and iliac vein should help relieve my severe pelvic congestion syndrome, including my bladder issues & all the reflux and pain in my legs. 

Now for the rest of the surgery. I was so relieved to hear my surgeon's plan because it was what I prepared myself to just ask him. This may sound drastic, but I was going to see if he could just cut me open and take a look, which is actually what he is doing for the MALS & SMAS. The ultrasound on Thursday & my previous CTA does not show well enough to confirm or rule out those compressions so he wants to be sure it's not what is causing my duodenum to not be functioning. If he does see that the median arcuate ligament is pressing or too low, he will resect it. For the superior mesenteric artery he won't actually do a special procedure for that because he believes once he puts the "external stent" around my renal vein, that will increase the angle of the SMA and would no longer be compressed. Both of those procedures he has done for my other friends and what I was expecting him to do before coming here. 

Surgery is scheduled for Tuesday 🙂 We are in a hotel until Monday afternoon when I will be admitted and then my procedure the next morning. I have to add that my uncle and I met with the surgeon for 2 1/2 hours yesterday. The first thing he said to me when I walked in was "I'm so sorry, how are you are able to even be a mother to your 2 children?"