Extremity and Other Non-Brain AVMs

Information

Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 588
Latest Activity: Jun 19

Discussion Forum

New to the Group

Started by Lionheart. Last reply by Lori Wilder Jun 3. 5 Replies

Follow up to an Embolization

Started by Lionheart. Last reply by takemeasiam May 31. 1 Reply

Comment Wall

Comment

You need to be a member of Extremity and Other Non-Brain AVMs to add comments!

Comment by Nico09 on June 12, 2015 at 2:11pm

Hi everyone,
I just thought I would leave an update - I had embolization and then surgery the following day to remove my AVM on my jawline. I had this done in Calgary at the Foothills hospital, and everything went pretty much according to plan. Right now I am finding that the site where they did the angiogram for embolization is hurting more than my actual jawline! I cannot move my bottom lip because a nerve in my face was affected, but this is suppose to get better with time (I hope!) The surgery wasn't as bad as I thought it would be, it took about 1.5 hours and I don't remember a single thing. I am really hoping for no re-growth. I hope everyone recovers smoothly! Let me know if you have questions about my experience and I would be happy to chat. :)

Comment by Mel on June 11, 2015 at 12:43am

Hey guys, thanks a bunch for getting back to me. We have not had anything done other than typical MRIs and such. We do want to try the compression bandage. I'm not too sure how to go about getting one. His doctor is in Toronto. Can I get one anywhere? And I think we are needing something heavier for the pain as well. Has anyone done any herbal medication for pain?

Comment by munchkin on June 9, 2015 at 9:59pm

My daughter had an avm in her foot Rolphie77 and has been in quite a lot of pain too. She is 14. It s a tough time anyway for teenagers, let alone with AVMS! It depends what sort of pain it is. We tried all sorts of things. Now she takes a nerve damage pain killer at night and at least that helps her sleep. She now wears compression stockings all the time as they really help the pain. Have you been to a pain management team at your local hospital? This really helped my daughter. Good luck. I so feel for you. Perhaps the shooting pain are nerve pains. This means that normal panadol etc dont help. She ll need other medication I think. Thinking of you

Comment by munchkin on June 9, 2015 at 9:56pm

Comment by JennR on June 9, 2015 at 7:16am

Hi Mel. Have you tried compression glove? Although, I see it did not help for Rolphie77's daughter, and it had very minimal relief for me, everyone is different so maybe (praying) it will help your son. I try to sleep with my hand elevated and try to elevate it whenever it is causing discomfort. As for medication, sometimes I will take Advil and then take Tylenol a bit later (taking them both has been recommended to me before by a doctor), if you want to try other things before going the prescription pain med route. Has or is your son had/having any procedures for his AVM? Good luck. Hope this helps. JennR

Comment by Rolphie77 on June 9, 2015 at 3:47am

Hi Mel. My 13 Year Old Daughter also has an AVM in her thumb on her right hand. She has had it removed twice with surgery and then it has regrown on both occasions. She has had a failed embolization and we are currently waiting for another embolization. She experiences pain on a daily basis and it doesn't help that this is also her writing hand. Compression garments do not help. Lately she has developed open sore ulcers on her hand and this has caused her even more pai and discomfort. She too gets pain shooting up her arm and into her neck. Our Consultant at Great Ormond Street in London has prescribed her Tramadol to help her pain whilst we are waiting for the embolization. This has helped quite alot but I know it can only be used as a short term measure. Maybe you could speak with your Consultant to see if Tramadol (not sure if this is what it is called in Canada) can help you son? Is there any interventional proceedures planned for your Son?

Comment by Mel on June 8, 2015 at 8:33pm

Hey everyone. I need some advice. My little guy is so uncomfortable and in pain with his AVM in him finger/arm and other than advil I'm not sure what to do to make him feel better. Any help would be much appreciated....xo

Comment by Nico09 on June 2, 2015 at 5:34pm

Hi Mira, That is reassuring! Thank you for your well wishes.

Comment by Mira on June 2, 2015 at 3:58pm

Nico09, My 13 year old son also has an AVM in his jaw. He has had one embolization at Boston Childrens Hospital 1 1/2 years ago. Other than some infections and mild pain he has been pretty stable. I hope your embo and surgery is a success!

Comment by Mira on June 2, 2015 at 3:56pm

 

Members (587)

 
 
 

Help Us Help Others

Support Ben's Friends

Bens Friends

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

Newsletter

AVMSurvivors is a peer-to-peer network

To get support, give support.

Blog Posts

Complex seizures=sleepless nights

Posted by Daphne on July 4, 2015 at 3:06pm 0 Comments

Just a view into our world...Jacob in the last month has now had 12 seizures and most are in the evening when he has already gone to bed...talk about being up all night worrying as what to expect next.As he sleeps due to the medication he is to…

Continue

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service