Daily Pain from AVM

Our daughter has daily pain from her AVM (it’s not yet been treated; still waiting to get third opinion & main doc still has yet to come up with treatment plan since 12/26/14). Externally, her AVM is on the left side of her forehead from eyebrow/eyelid up to beneath her hairline; internally, the AVM involves the ophthalmic artery. She complains of pain from the AVM everyday, and at times, a pins and needles feeling. I am curious if others experience this and if you’ve found anything that works to minimize the pain. So far Ibuprofen helps a bit, but we try not to use it every day.

Hi! I'm an adult with AVM on left ear, scalp and in the salivary gland in my cheek. I had surgery for AVM which saved my life but was unsuccessful as far as the AVM returned right away. I am also in daily pain with burning pain, numbness and tingling also. My expectation was that the surgery would take away the pain and in my case at least that did not happen. The pain is worse on exertion or exercising, cold weather, pressure from trying to wear a hat to cover it up or accidently sleeping on that side. I haven't found anything to help with the pain. I can't take strong narcotic pain relievers because of their side effects. Maybe some of our other members have had better success with something for pain and will let us know what they've done that helps.

Thank you for replying. My daughter has also mentioned the burning/stinging feeling. I’m sorry you have to go through this. Again, thank you for taking the time to share some of your experience:)

You're welcome, Katherine. I'm more sorry that your daughter is experiencing this pain and I can imagine how hard it is for you to see your child in daily pain. I'm hopeful that in the future there will be better treatments for AVMs and AVM pain. Have you asked your AVM doctor if he or she could recommend anything for the pain?

Hi Katherine,
I'm sorry to read that your daughter's having this pain. It's awful seeing our kiddos hurt!

My husband, Jeff's AVM covers most of the left side of his face including ear, eye, forehead, cheek, chin etc.
He has pains in various places from that. His doctor only wants him to take Acetaminophen and to avoid Ibuprophen, NSAIDS and any other meds that are anticoagulants.

He hates taking narcotics so most of his pain reduction comes from reducing the size of the AVM and alternative pain management.

Something that has helped him is reducing swelling. He invested in a wedge pillow and sleeps on an incline. This makes his face swell up less and then there is less pain in some areas. Making sure he doesn't sleep on that side helps too.

Also, he does things he enjoys and other stress relieving activities to try and distract from pain.

Good luck!

- Kimi

Katherine, I am sorry to hear about your daughter's pain as it is seems so unfair for little ones to have AVMs or any type of illness, it just doesn't seem right. However, I can relate to your daughter's condition as I have a facial AVM and suffer everyday with pain, pressure and discomfort. The burning and tingling she describes is caused by the AVM expanding into the surrounding tissues which become inflamed (the burning sensation) which in turn places pressure on nerves (the tingling and burning and pain like electrical stimulation). Nothing will totally eliminate the symptoms short of a resection to remove the AVM, but medications like Lyrica, Gabepenton or Nuerontin can help. I take a Narcotic twice a day which helps a lot, MS Contin which you might ask the doctor about. She could be placed on a low dosage like 15mg extended release. Hope this helps. r/ Steve

Hi there I’m sorry to hear of your daughters psin…my daughter is 17 she had a pva embolization in Boston in sept for pain and it was the worst thing we ever did she’s been in excruciating pain for 7 months her doctor told me she had trigeminal neuralgia as a result of the surgery which is bull I’ve had 4 doctors tell me they didn’t think she had trigeminal neuralgia we are now consulting with Dr suen by phone he thinks her artery is expanding and hitting her nerves she’s on neurotin and doxy now per his instructions and praying for relief. …prayers and hugs to you

Thank you for your reply:) Is your husband receiving treatment for his AVM?

Steve, it really helped to have you share the “scientific” reasons as to what actually can cause the pain. Thank you:)

I’m so sorry to hear about your daughter’s situation:( what does PVA stand for? I would love to hear about how your consultations go with Dr. Suen since we are considering him for Baylie if the doctors in Denver don’t “work” out.

My heart goes out to all of you who have to deal with pain from your AVMS and for those of you who love the people with AVMS. Thank you all for your replies:)

THis is my daughter's EXACT complaints EXACT diagnosis . My Hailey is 14 years old. PLEASE call me 310-■■■■■■■■