Extremity and Other Non-Brain AVMs

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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: 577
Latest Activity: on Friday

Discussion Forum

Great news!!

Started by munchkin. Last reply by Lori Wilder on Friday. 8 Replies

Disability and extremity AVM

Started by Desiree. Last reply by LINDA GAYE MILLER on Wednesday. 6 Replies

Rowing and foot avms!

Started by munchkin. Last reply by Lyknthrp Mar 31. 19 Replies

Comment Wall

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Comment by Dom on Wednesday

Linda - Thank you for your candor in sharing so much experience........
Your positive outlook provided a much needed spark to pick myself up, remember EVERY DAY must start and end with prayer /meditation to have acceptance, gratitude, mindfulness, and most importantly faith in this life, otherwise negativity, resentment, self-pity, and hopelessness immediately take over --- happiness is my choice, not a result of circumstances, most of which I have absolutely no control

Thank you so much, your encouragement provided a blessing in my life, and a sign of faith in action
Yourself and your family will be in my prayers

Comment by Tessy123 on Monday

Hi - anyone any experience of Peter Rowlands at Liverpool hospital? I am being referred from local hospital. I have vascular malformations through right buttock, and right thigh. Anyone anything similar? Thanks.

Comment by laura jurgens on April 8, 2015 at 11:29pm
Hormones and trauma encourages it to grow, so yes at any time.
Comment by Erin H on April 8, 2015 at 3:28pm

Question for you all: I had 2 AVMs (one in my neck and one in my abdomen) that were treated with ethanol embolizations. When we did scans early on and even at the tail end of those treatments those were the only ones seen. Now I have developed a 1cm "nodule" on my sacrum. It was not in previous scans of the area and because of where it is located it is in a bad spot for a biopsy. Can an AVM just randomly show up later in life? I'm 37.

Comment by JennR on April 8, 2015 at 7:54am

Hi. I'm new to this group and have been wishing for a resource like this most of my life. I was born w/ a small purple "spot" toward the tip of my middle finger of my left hand. A trauma to the finger when I was a toddler caused it to grow. The doctors told my mom anything from a tumor to hemangioma. I grew up having numerous surgeries and doctor's visits. My last surgery was probably about 10 years or so ago thru the Mayo Clinic at the University of MN hospital. The doctor told me that they could not get all of it because the last artery feeding the finger was involved - if they damaged that, the finger would be lost. She also told me that what I have does not spread. Unfortunately, this conversation occurred after I trusted her to do the surgery on me, because I knew better (it had already spread from the tip of my finger, throughout my finger, and down into the palm of my hand (I haven't even been able to wear my wedding ring for several years now because it causes discomfort)). So, I knew she either did not understand what I have or she didn't know what it really was (a respectable doctor, IMO, wouldn't operate under these conditions). I, sadly, didn't either at the time because I was going on the last information my mom had received when I was a teenager (hemangioma). After a lot of looking online on my own, I feel like I may have found a resource with the help, support, and information I need (hopefully).

Comment by LINDA GAYE MILLER on April 7, 2015 at 8:20pm

Thanks for your kind words and support. I let you know more when I learn more. Take care and remember to have fun,


Moderator
Comment by Debra on April 7, 2015 at 1:38pm

Hi Linda - what a raw, emotional post about what it's like emotionally to have an AVM, which is so different from the physical. Everybody's AVM is different, different diagnosis, different path, different location, different feeders, etc. and perhaps this is what makes it harder for some to come to this site for advice, if you will. May people also stay involved on this site for a time and come back when they need emotional support or make use of the ample resources this site provides. Thank you for your honesty, your emotion, and truly understanding that your decisions are what's right for you. Please let us know what you decide to do for sure, so we can be by your side. All the best Linda:).

Comment by Steve on April 6, 2015 at 9:53pm
Linda, thanks for sharing the wisdom you have come by from living and coping with your AVM. I have acquired the same knowledge over time, especially about the strain upon the heart. Unfortunately my AVM is in my both sides of my face now, affects my neck, throat and my head in general. I have had good luck with Onyx surgical glue. Doctors say mine is too high flowing to use any other type agent. Had an aneurysm and AV shunt corrected last summer, but contracted a bladder and staff infection which nearly killed me. Took over six months to totally recover and now, less than a year afterwards already have major re-growth in vicinity of the vessels that were embolized. I know I will need angiography soon to check out all that is going on in my face, neck and head but am feeling very stressed about it after all I've been trough the past year. However, your story inspires me to keep going; so I will. I will be thinking of you and praying God guides your doctors to find the right solutions for you. Thanks again for sharing... r/ Steve
Comment by laura jurgens on April 6, 2015 at 4:38pm
<3 <3 <3 Linda Gaye Miller.
Comment by LINDA GAYE MILLER on April 6, 2015 at 3:22pm

Hello-I just wanted to check in to see if I could help in anyway. I read all the comment far back as Sept. I hope my experience will be of value and provide comfort. I could relate to so much of What I read. I understand the reluctance to visit this site. It can be very difficult searching for solutions to our disease and finding out that we may not have the answer. The lack of knowledge in the medical community is heart braking sometimes too. I think we are still in a trial and error period of finding out what works. The best we can do is share our experience and offer moral support. It can be comforting to know your not alone. Finding the solution for us is time consuming and confusing. This is my experience with AVM of the left arm and upper extremity. I am now 52 yrs old now. I agree with what Laura jurgens shared. I had several surgeries to remove AVM veins. The veins grew back. Embolization kills all the cells at the site of embolization, which prevents them to grow. I haven't had any other treatments for my Avm. Embolization was not the right treatment for me. My AVM is tomlarge and progressed immensely. I had the alcohol embolization from Dr. Wayne Yakes in CO. I stopped because the recovery was too hard. The steroids I had to take cause fatigue and a deep depression. I wasn't willing to continue putting myself through that. Maybe there are better embolization agents that work better. In August I began experience shortness of breath with exercise. I've had many test. My AVM is responsible for my symptoms. AVMs place added stress on the hard. The larger the AVM the more stress. My heart is no longer able to keep up with my body's demand. My heart has not been damaged yet. However, it will eventually. It's called High output cardiac arrest. Please don't panic it happens slowly. Also you will have symptoms before any damaged is done. The larger and worse part of my AVM is in my forearm. The cure for my heart problems is an amputation. This will relieve the stress on my heart and fix my symptoms. It has taken these last 8 months to find a team of doctors willing to perform the surgery. It's all coming together. My vascular surgeon, cardiologist, hematologist and reconstructive surgeon are working together to come up with the safest way to do this. I'm looking forward to it. I haven't been able to use my forearm for years now. The bones and muscles are gone. My upper arm bone and muscle are in good shape. My amputation will be just above the elbow. It is not easy to live with this disease but you can be happy despite your AVM. It has been helpful to me to focus on what I can do instead of what I can't. To remember their our others who have it worst. To right down everything I'm grateful for. To seek a relationship with a higher power or God. To ask and rely on God to give me the stregnth and courage to walk through this. It's been helpful for me to help others. It could be asking someone else how they're doing, an anonymous act of kindness, helping some one move etc. This get's me out of self pity. The Serenity Prayer is one of my favorites. I pray and meditate daily. I stay in the moment. If I'm in pain I tell myself it's just for today. I have 2 amazing grown children and a very full life. I experience happiness and joy all the time. My life is good and your can be good as well. I hope this helps. I'll keep you updated on my medical treatment.

 

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