Steal syndrome

[Jk2023]

Hello hope everyone is well.Yesterday my mam had a scan and today she got the results to say she doesn't have much blood flow to her hand and told she has steal syndrome has anyone had this,Or know much about it? All we've been told is that she will need a op and giving options to take the fistula out or have a op to reduce blood flow from her fistula so she gets more blood to her hand. Any info would be great thank you

[barbara55109]

I have an unused fistula. My egfr stabilized and I don't need hemo yet. I don't have steal syndrome, but my hand does get numb and tingly. I've lost so much weight that when I try to shake my hand awake my wedding ring flies across the room. I've had to remove it from my ring finger and move to my middle finger. It is a band with engraving all around. I can't get it resized or find something to make it fit! Sorry I can't answer your questions, but I empathize.

[ShyeLoverDoctor]

As I understand it, I am not a doctor, steal syndrome means when they operated to install the fistula , too much blood has now been diverted away from her hand. That’s obviously dangerous the tissue in her hand will die off if blood flow is not restored.

[Ziggydoodah]

Hi JK. Yes I had an operation in May due to Steal Syndrome. I had my fistula put in 2022 and because it was a "great" fistula I was put on haemodialysis after a month. For the last 18 months I was complaining to my renal team about pain and pins and needles in my hand. My fingers would turn navy and white, when the weather was cold. I would get a lot of numbness and have to hang my arm out of the bed at night, as the pain was so bad. I actually argued with the nurse practioner, who said it was Carpel tunnel syndrome. Eventually after kicking up a fuss I got an appointment woth the surgeon, who did my fistula. After a quick scan, she confirmed the blood flow was too high. I was expecting the blood flow to be reduced and that would be that. Unfortunately it turned into a bigger operation than anticipated. The surgeon was shocked at how big my fistula was and it seemed my buttonhole entry points were hitting a nerve. The reason why I was in agony getting the needles inserted. Unfortunately they had to reroute things in my arm, so in order for it to heal, I had to get a line put in. To say it felt I had been hit by a truck was an understatement. I usually take procedures on the chin but this floored me. Nobody had discussed the possibility of a line. Plus the fact nobody had listened to me for months, didn't help. Fast forward 3 months later..my new fistula has been working well. I no longer have any discomfort and I am due to get my line out soon. Its not just your mums hand you have to worry about. It's also the amount of extra work your heart has to do. Definitely get it checked out. Ask lots of questions and let me know if I can be of any help. Please do not let it get any worse. I know another patient who got it done and he didn't need a line. He was back using the fistula a couple of days later. All the best and keep us updated 👍

[barbara55109 in reply to Ziggydoodah]

It's sad this happened to you. I hate medical gaslighting! It's good you have come out the other side with your hands!

[Ziggydoodah in reply to barbara55109]

Hi Barbara I used to never really question doctors and always followed their advice. Since I was diagnosed with CKD I question and Google everything!! I knew it was Steal Syndrome just by doing my research. What I couldn't get my head around, was ALL the nurses etc not even agreeing, when I showed every symptom!! When I did get to speak to the nurse practioner. She announced it was Carpel tunnel as she suffered from it too 🙄🙄..She even got me a special glove to wear. I felt like throwing it at her!! Sometimes you feel as if you are hitting your head against a wall. However one thing I have have learnt is make your voice heard. You know your body better than anyone. Stand up for yourself folks. It's you that has to live with the consequences!!

[barbara55109 in reply to Ziggydoodah]

Always remember, half of all doctors graduated at the bottom of their class! Nurses too. I have had so many "rare" things and have had to fight, fight, fight. One radiologist insisted I still had my colon and rectum - even though mine had been removed nearly 30 years earlier! My latest weird thing are rare intestinal stones. I'm passing fracking ROCKS. When I finally got into GI they said, "what do me expect to do about it?" I just have to wait until I get an total blockage and head to the hospital for surgery. Though the only qualified colorectal surgeon in my network just left! Getting out of network referrals is impossible, even when no one in network has ever dealt with intestinal stones. They are called Enteroliths and there are many papers about them. I keep wondering if I should just drive down to Rochester the next time I feel a blockage so I could say I needed to go to the ER at Mayo since it was an emergency. They know what enteroliths are. After 45 years of chronic illness, I was 15 when I got ulcerative colitis, I've learned I cannot trust medical professionals. I have to verify everything with my own research. they had the cause of my CKD wrong for several years. I've finally convinced my nephrologist and the transplant nephrologist the cause was dehydration. My endo was the only one who immediately agreed it wasn't from my very stable T2.

[Ziggydoodah in reply to barbara55109]

Wow Barbara, much respect to you. What a lot you have had to deal with. Are you in a lot of pain? I sometimes have days when I feel quite sorry for myself. However I then usually see people who are dealing with a lot more serious health conditions and I give myself a good talking to. Kidney failure is bad enough but to deal with what you have, takes some determination. I'm glad you are proactive in your healthcare. You do what is best for you and get the answers and treatment you deserve. Much respect to you x

[Jk2023 in reply to Ziggydoodah]

HelloThey said the same to my mam that it's a good fistula and she has been mentioning the pins and needles and burning in her hands for months also I'm hoping that she doesn't need a line in. She had an emergency line in before her fistula was ready to use and she was in hospital every other month with staph infection and sepsis. She's waiting for a op date now hopefully it's soon and they don't take forever getting her in. I'm glad your new fistula is working well sounds like you've been through it also!! Thank you for your help will keep you updated

[Ziggydoodah in reply to Jk2023]

Ask if there is a possibility of a line being put back in. I never even considered getting a line. I was only told when I woke up from my fistula procedure. I was then whisked away two hours later to get the line put in. That in itself was an event. I don't know if I was still recovering from the anaesthetic but I started to violently shake and burst into tears. The surgeon continued to push it in my neck area. The nurse had to shout at him to stop, while they sedated me. I really did feel traumatised by the whole thing. When I went back to dialysis, I was in tears as I explained what happened. The nurses were all shocked by what had happened. Deep down I was furious as I am convinced if I had been operated on, when I first complained, the procedure would not have been this bad. I really hope your mum's goes OK and she makes a quick recovery but just prepare yourself. All the best x