Hopefully this thread might help anyone who experiences the same prolonged swollen stomach as me post op. Fear not;it is apparently (and fortunately!) rare for the problem to have presented itself in the way it did for me. I have highlighted my experience below to outline the importance of listening to your own body and not putting blind faith in the advice given by professionals. In hindsight I should have insisted on a physical check-up, not just relied on the phone advice....
I had a RN left kidney (15" tumour), adrenal, part renal vein and 18 lymph nodes removed from abdomen June 22. Surgery seemingly went to plan and I was discharged 3 days later for home recovery.
I was obviously swollen at this stage but upon weighing myself I was 1 stone heavier than pre op. I mentioned this to the nurse specialist during phone follow up and was assured this was not uncommon due to swelling and it would take 6 months or more to see some signs of a normal physique back.
I double checked this advice with another eurology department at a different hospital 1 month later, as the swelling hadn't subsided any. The specialist nurse also advised me that my swelling could take over 6 months to go down and that everyone has a different speed of recovery and the bombshell that may body may never return to previous shape!
To put this all in context I had a pretty flat stomach pre op and a slim frame. What muscle I had on my frame was falling away despite trying to keep myself moving with this bowling ball in my abdomen. By the 2 month mark I noticed that my belly button had now gone external, I had severe acid reflux and a very unpredictable stomach and a wind problem :) - all whilst supposedly on holiday at the time!
The FIRST post surgery phone call from my surgeon to discuss histology etc was taken at this time, over 2 months after the op. I mentioned all of the above symptoms and was again assured swelling normal , acid reflux not related in anyway and stomach problems "these things can happen".
Returned from holiday feeling very uncomfortable and convinced I was getting worse not better!
Started googling things and found conditions like lymph leak and flank bulge which seemed to leave people with a physique like mine.
So I e-mailed the nurse specialist outlining my concerns I might have one of the above conditions post surgery. Surgeon called me back and assured me I didn't as Lymph leak would mean I'd also have swollen legs / ankles and the problem would have presented itself soon after the operation and my key hole surgery not possible to cause flank bulge.
Still not convinced I was as I should be at nearly 3 months post surgery I ran these responses past another local eurology department and was told the same as above! Although the nurse there did offer to get booked in " to check my bloods and reassure me my swelling was normal" at the earliest available, 10 days time!
I had a brain wave to send some photo's to the specialist nurse to show the surgeon my before and after physique, as they hadn't seen me once since the op. This is madness in hindsight but then I put my trust in the experts. I also sent these photo's to the other 10 day appointment department for good measure. Both specialist nurses now agreed my swelling was abnormal , the surgeon then called but said he wasn't overly concerned and had I had an open surgery I'd have "been much more swollen" however he was now going to bring my CT check up date forward as he could "sense from my email I was getting anxious"
Ct date wasn't going to be another month. Friends and family noticed I was getting bigger over net 2 days alone! Reluctantly I followed my wife's advice to present myself at A and E. I did just that and was admitted to hospital the same evening. CT scan showed huge amount of lipid build up in my abdomen, the doctor was surprised I was breathing OK as my lungs were swimming in fluid, stayed in 4 days then transferred to the hospital which performed my original op. I was diagnosed as having had a Chyle leak from the operation, from the lymph node removal and had over 17 litres removed from my stomach ie. over 17KG in weight lifted! The leak had been starving the rest of my body from nutrients , hence the muscle loss and generally feeling lousy. The surgeon was rather apologetic! Apparently rare to present late after surgery and without swollen legs. Kept in hospital for 14 days and now released on a zero fat diet to try to get the leaking lymph/s to dry up and heal. CT scan in a month to hopefully confirm all OK.
In hindsight I should have been more insistent but I did put faith and didn't want to pester. Never had a day in hospital in 46 years , prior to all this, so assumed the pros knew best! Obviously a massive amount of unnecessary stress caused by all this for my family and friends and have lost a small fortune trying to keep my business afloat for the past 4 months, joys of being self employed! I was expecting to be back up and running within a couple of months , suspect I probably would've been without the leak.
Hopefully this message may help someone else over the course of time.
