Hi guys, sorry for messaging. My partner has an AVM on her motor strip which has led her to have 7 embolizations and 2 bouts of Gamma Knife Radiotherapy in 2008 and 2012. She has always had issues with her memory and lost the feeling in her left side. However in the past year she has gotten very sick. She has lost the hair on top of her head which she feels in inverted as its growing slowly and painfully, getting tremors, feelings of brain swelling and slurred speech. The hair is the main problem as she believes the Gamma knife frame is the cause of it, due to her hair being platted and screws being used to drill into her head through the hair. The pain she feels now brings her right back to the pains she suffered following GK. This has caused her to lose her Eyebrows and eyelashes also. We have spoken to many doctors but all seem very dismissive of this, I was just wondering has anyone heard of such symptoms so long after their GK treatment or have heard of any complications regarding the Leksell frame? Sorry for the long message.
I haven’t heard of such effects so long after GK. I have heard some hair loss associated but generally near the time of treatment. I had GK in 2016, and didn’t experience hair loss and really no side effects that didn’t exist post bleed. I’m disappointed in hearing Drs being dismissive as it certainly sounds like something requires further investigation and follow up. I hope you have some success with the medical field. Do you have other care provider options? The hair loss part now seems really different from anything I know. I did a little search and found there are a number of things that may cause what you describe, and would bring those to a care provider if they are discounting the GK possibility. John
Thanks so much John I really appreciate your message. Yes I would be really grateful for any advice at the minute. We are currently speaking with a dermatologist who has agreed the hair is being pulled inwards, not Louise pulling her hair out and it’s not alopecia so he is going to speak with nuerology to see if there is any literature regarding the frame/screws but because of our year long history of doctors laughing us out of appointments, i have had to reach out to everywhere and anywhere to find help. Louise has just received another angiogram as there is some residual AVM remaining. Thanks so much for your message John honestly.
This sounds very unusual, very rare. However, I have a work colleague who was injured by a football to the eye many years ago and the thing that comes to my mind about Tony is that I remember he ended up with an ingrowing eyelash from that injury. I can’t remember what was done about it – I think it may have been surgically removed – but all of that injury has left him with one black eyelash and one white eyelash!
I’d agree with your wife: it seems likely that it is the injury from the frame that has led to an issue with a hair follicle in a similar way. I will ask Tony about his eyelash to see what was his resolution.
Are you describing an area of hair loss on her head or an issue just where the screws fitted? I’m thinking currently mostly about just where one of the screws was fitted.