Pelvic AVMer!! Had my 4th treatment last Tuesday. They did a lot! Said it is now only 10% of the original size. I have never experienced any complications or pain this long Fter. I realize it is only a week, but I have been having pain in my right butt cheek and back of my upper hamstring. It is extrely painful. I talked to my dr last night and he thought maybe it was the venous outflow trying a new place to drain or embolizing off. I’ve been taking Tylenol pretty much around the clock without much relief. The only time it doesn’t hurt is when I first wake up. I’m praying this is temporary!! I’m going to try some spanks to help tomorrow. Any other suggestions or experience similar??
Hi there Pelvic AVM'r
I had the same problem after my last pelvic AVM procedure. I always thought it was the AVM giving me the problem. I had some similar but less painful on other procedures. Found out that laying on my back so long without moving does real nasty things to your disks and your back. This is the outcome with longer procedures. My butt cheek and hamstring gave me a lot of pain. I ended up having physical therapy and they also found I have a herniated disk that gets aggravated because of the back being so rigid during surgery and afterward post op. I asked my vascular surgeon about this and he said it can be pretty common to have the back affected. The sciatic nerve can be nasty when put in a position it doesn't like. This may not be your problem but it sure sounds just like I experienced after the last and most successful procedure. Try doing simple back exercise and stretching. The web will give you some basic ones. Let me know
Try alternating the Tylenol and then take Ibuprofen in 4 hours and then the Tylenol and keep alternating. a nurse at Mayo told me to do that after a painful angiogram hit a nerve and it actually worked to alleviate the pain. Hope you are feeling better soon.
I'm finding this discussion quite interesting. I have an AVM in my left leg, just above the knee. I can say that I only have symptoms in times of hormonal activity. My pregnancies were very hard on the AVM. The swelling was awful and painful. Some discoloration, too. However, what's interesting me the most is the mention of the heart.
I have always had episodes of rapid heartbeat and a diagnosis of a heart murmur. I KNOW that the AVM is related to the rapid heartbeat and to hormonal activity. (Contractions from labor and even from monthly menstrual cramps coincide with bad pain in the AVM.) I have never had a doctor tell me that this is so, though. It's comforting to know that I'm not the only one who feels it's all connected.
I also see Dr Rosen in NYC. He is a true comfort and a wealth of knowledge and info. I am seeing him this week because an ovarian cyst on my left side burst last month. The AVM has been a wreck ever since. I may be entering menopause, I guess (lots of hormonal activity), and I'm assuming that that means the AVM will act up more.
I've always told Dr Rosen that I preferred to leave the AVM untreated. After this rough, painful, swollen AVM month, I may change my mind.
Thanks for the info on the heart murmur. Keep it coming. :)
My butt back and thigh hurt all the time from my pelvic AVM I have had 3 embolization and a resection with no relief but after surgery seems to be worse. I also am on a non narcotic pain killer called ultram it helps take the edge off