Sever pain after needling and during treatment

Hello, I am new to this site.

My son is a 21-year-old renal patient. He was diagnosed with ESRD at the age of 8 and has been through every treatment possible. He was on 4 years of PD, then 2 years of hemo using a catheter and then had a transplant at he age of 14. His transplant failed after 4 years so he went back onto hemo using a catheter. After much debate his doctor talked him into a fistula (my son has had a needle phobia since childhood.) Learning to needle has been one of the biggest challenges of his life but he has gotten through the process and is now needling himself at every treatment.

He uses a Bellco Formula Home System with a double pump, single needle and has developed a buttonhole. Since the beginning my son has been experiencing intense pain after needling and during treatment. We assumed that it would calm down after a period of time but instead got worse. There are various opinions on the cause of the pain but he feels that the most reasonable answer is neurological as the symptoms describes what he is experiencing. The vascular surgeon claims this is very rare and did not have anything to offer other than narcotics. These are not an option if my son is to run a home dialysis system. It would be the equivalent of drinking and driving and besides we wanted to figure out why it was happening.

We tried changing the position of the buttonhole to see if the needle was hitting a nerve but the new site developed the same problem.

He had his good days where there is very little pain but then the next session could be excruciating. To quote “It feels like someone is trying to saw my arm off with a dull blade.” Then there was the feeling of acid under the skin. The pain was so intense he would experience a vasovagal response (BP elevated not low) and faint leaving me, his dialysis partner, to try and hold him up until he came to.

After putting the word out to some friend about the situation someone suggested acupuncture. Within one treatment the pain was gone. This shocked us, his doctor and the home dialysis team as we had been struggling for months with this situation. I guess they use acupuncture in China as a sedative for surgery and it works on the same principle. For the first few weeks my son had acupuncture twice per week to stay pain free during treatments. He is now down to once per week and it has also helped with his blood pressure.

Has anyone else experienced this type of pain and has any other dialysis patient tried acupuncture?

Thanks for any feedback.

First thank you for sharing this with are readers. No I have never here of this but if it works continue to use it. There is a small population of dialysis patient that suffer from this problem often they change their buttonhole site. The one question I have for you is where is his buttonhole site located at?

Hello Stuart,

His original button hole was about 3 inches from his wrist and he really can’t use it. Too much pain even with acupuncture so we assume he really is hitting a nerve. The second one is 1 inch above the old one and it works well if he remains on the acupuncture. Miss a week and the pain builds again. He has very sensitive skin receptors but this pain is deep in the arm and can go right up the arm to his head.

Can you tell me how often this occurs? 1% of the time? 2%? Do you have any idea as to why it happens?

No I don’t, but it does happen to maybe 1 to 2% of AVFs. However, I have just been to the Heartland Kidney Network annual meeting. There I was introduced to a new method of cannulation. You might have him try this after you have seen the slide presentation by Dr Shenoy. [Editor’s note: here is the pdf: Let us know if this helps.