Hi all, it's been quite a while since i posted on the site but have a question that has been frustrating the life out of me. Perhaps someone can cast light on my need to know. I hope the content of my post does not offend or upset anyone because that is not my intention.

Has anyone or anyone you may know have HUGE AMLs that have NEVER been embolized & if so what are the reasons for non-embolization. Was it because of the risk to present kidney function & the need to preserve it or other reason. I have read several posts where people mention their embolizations & their reason for them but i've never really read about other reasons for non-embolization.
I ask this due to personal circumstance. Some of you may have read a previous post of mine when i explained about my wonderful son Gary passing away 01/11/2008 aged 26yrs, due to massive haemorrhage of left renal angiomyolipoma.
Gary's kidney problems were detected following a bleed in April 2001. He spent 7 days in hospital with 3 doctors differing in opinon as to what course of action to take next. It was decided no action at that point as the bleed stopped itself & Gary returned to good health. We were told his kidneys were ok although cystic & having some AMLs & his kidneys were 19cms & 22cms at the time. It was after this stay in hospital that Gary's abdomen began to grow. Over time he looked very heavily pregnant & ready to give birth. He gradually went from a 30 inch waist to a 40 inch waist. In late Sep 2007 Gary presented with another bleed & again after 9 days in hospital he recovered well without any surgical intervention. However this time he remained constantly tired & not wanting to bounce round the park in his wheelchair as he had previously loved to do. Instead he just mostly slept in his chair round the park. Gary's kidneys continued to grow & eventually displaced his bowel & god knows what else. On Oct 5th 2008 Gary had a 3rd bleed,went into acute renal failure but through supportive therapy (several blood transfusions) & other non-surgical treatments his health improved & the bleed stopped (apparently). Gary was discharged from hospital on the 17th Oct only to return again on the 21st (more or continued bleeding????). Embolizations & dialysis were discussed but still doctors were reluctant to act due to the risk of Gary not coming through the proceedure & the extreme likelyhood of total irreversible renal failure. They said Gary's renal function was not low enough to require dialysis. His left functioned at 30% & his right at 60%. There was concern as to how Gary would manage dialysis. On 1st Nov Gary deteriorated & was rushed to theatre for emergency emolization but never made it that far. I constantly wonder if the lack of intervention contributed to the outcome or had they acted sooner would he have passed sooner. I just dont know & it's constantly there in my head. I know i cannot change what has happened but some days i am so angry & constantly guilt ridden. I'd always fought for Gary & his medical needs but feel i let him down..Were the doctors wrong or right i always ask myself. Gary's kidneys were over 30cms each & nearly as wide. The average kidney is between 9 & 13cms. His left one weighed 11lb & his right one 13lb. Yes pounds not ounces! They should only weigh 6 oz each. When angry, part of me feels that there may have been other reasons for Gary having reached this point but i wont state them now....
If anyone can offer any information please do so.
Thank you for taking the time to read my post. I do know i've babbled on but again with no intent of causing upset.
Tracey.

Hi Tracey

Thank you for sharing your sad story, I really don't know what to say to you, I can understand that you have feelings of both anger and guilt concerning Gary. Whoever is to blame, it surely can't be you. My daughter, Michelle, has had 6 embolisations done, about three of them done in emergency, before the first major bleed when she was 16, I was vaguely told by her paediatrition that she had aml's but they would be monitored, at that time I didn't know that they could bleed. After her first bleed, we were on holiday in South Africa at the time, the urologist said they weren't going to do anything, that she should see a urologist when we got back to France. On our return to France, the urologist in Calais, told us that he would not embolise, even though the aml's were about 8cm at the time!!.There is a risk of bleeding if the aml is bigger than 3.5cm, and is vascular, some are more vascular than others. She then had another major bleed, had to have a blood transfusion and rushed to Lille, her life was in danger, that is where she had her first embolisation done. I never went back to him again and she is now cared for at a specialist hospital in Lille. She has since had 5 others done, another in an emergency and the others as preventative measures - 3 on each kidney. Her kidneys are growing and she has chronic renal failure and now has to have érythropoïétine injections because she is so anaemic, although her aml's are larger than 8cm the urologists don't want to do any more embolisations on them as they fear that further damage will be done to them, she has a yearly MRI scan done to monitor her kidneys, two weeks ago she had a small bleed, but it was not necessary to take her to the hospital.

In saying all this, I don't understand why an embolisation wasn't done on Gary, but I'm no doctor or specialist in TSC, just a concerned mom. If the doctor's were negligent in their care for Gary, one will never know, but I don't think that you should blame yourself in anyway, I know this may be a hard thing for you to hear, but I really believe that you are just going to have to put all your questions to rest, Gary is no longer with you, try and savour the good memories you had with him whilst he was entrusted in your care, I'm sure you did the very best you possibly could do for him.

Kind regards
Jacqui