The story of Katia
Constant, sharp, stabbing pain in the left flank which got worse after a meal, when moving around and changing positions.
I started to look for answer again. Went through multiple CT scans and tests until in December 2021 my left flank was full of bruises and varicose veins.
Pain persisted and I still had to pee more than 35 times in a 24hour period.
In February 2022 I had my second open surgery to change the renal bypass, remove the stent that opened the bypass, to pin up the left kidney due to nephroptosis and to liberate MALS. The surgery went well but I had severe post surgery complications due to chylous ascites and had to spend more than a month in hospital with a drainage.
Now, 6 months later I still feel terrible pain in my left flank, in both sides of the pelvis and in my entire abdomen. I still have urinating frequency and urgency. For the past 5 years I’ve worn adult diapers. I can’t even shower alone because I tend to faint and when eating nausea start and don’t stop until throwing up. My legs hurt and I can’t barely do anything. I’ve also tested positive for lupus, dysautonomia, fibromyalgia and I now have several doctors have diagnosed me with Ehlers Danlos (pending genetic testing).
I’m now receiving palliative treatment with ketamine and lidocaine infusions every couple of months to try to manage chronic pain but still, no joy.
This is the whole story briefly explained.
There are several points I want to highlight according to my experience as a patient:
1. It’s important to rule out all vascular compression syndromes before fixing one. I had PCS fixed before fixing NCS and that was a big mistake.
2. Doctors are reluctant to treat patients that have already seen other medical companions which makes second opinions very difficult to obtain.
3. I’ve had many CT scans and tests performed and the problem with vascular compression syndrome is that radiologists and also doctors don’t know how to understand and interpret the results. Example: I had a CT scan done in 2017 and showed it to 6 vascular surgeons and none of them saw anything especial there until I found an experienced vascular surgeon and when I showed him exactly the same CT scan he saw 3 vascular compressions.
4. Not having a diagnosis is the worst of all. I spent four years looking for answers and nobody knew anything. This feeling of despair is awful.