Replies to This Discussion

Permalink Reply by Kim R on February 7, 2012 at 4:06pm

Antonia, I am so sorry for the pain you are in. I don't know what the sores you are experiencing might be. I had the same kind of burning pain after an embolization for a high flow AVM in my ear when the skin burned off and I know how awful burning pain can be. I also don't tolerate a lot of pain meds. Have you considered going to a pain management specialist? Maybe you could get some 2nd opinions from some doctors in the US. I would recommend Dr. Waner or Dr. Levitin in NYC or Dr. Suen in Little Rock, Arkansas. I resisted getting on some anti-depressant medicine for a long time but eventually did and it helped. Dealing with a chronic health problem can be very challenging and sometimes we need help. Many of us understand what you have been going through. You are not alone--we care about you. Kim

Permalink Reply by tania on February 9, 2012 at 10:22am

My dear Kim
Τhank you so much for all your wonderful words and your very sweet friendly feelings. Thank you very much for the names of the doctors.I will try to get in touch
with them.I just wish I could live in another country and in a big city. Unfortunatelly
I live in a small country ... in a small village ... with out professional doctors and with
AVM and a pain and this makes me feel so lonely, sad and depressed. God is my only hope and
you are my consolation.
Kind Regards

antonia

Permalink Reply by Deb C. on February 7, 2012 at 8:31pm

Hi Antonia,

Maybe you should try to find a doctor in your country to help with the pain but make an appointment with someone in the United States that others have suggested for a more permanent solution to your problem. The closest thing I've had to your horrible problem is having a bad sunburn and not being able to sleep. I know I was miserable, and I can imagine how much more miserable you must feel. Hope you can find something that helps.

Take care,
Debbie

Permalink Reply by tania on February 9, 2012 at 10:31am

Dear Deb,
Thank you very much for your help and advice. I feel fortunate that I found this wonderful
site which is full of friendly helpful people ... full of friends ... you are one of my
friends. Thank you.
Love
antonia

Permalink Reply by Amanda O' on February 8, 2012 at 9:26am

My AVM is very similar. I was just at the doctor yesterday. The "sores" are draining yellow again. So, new antibiotics, I'm allergic to many antibiotics because I've needed them so often. I'm going for new images and meeting with another specialist next month. I've lost part of my foot as a result of embolization cutting off flow to it. I'm looking into alternative therapies now. I've been told that further embolization will cut off blood flow to the foot and I'll face amputation at the knee. As for sleeping, I prop my leg with a pillow and perch my foot off the bed so nothing is in contact with it, but its not hanging. Dr. Sally Mitchell at Johns Hopkins, an interventional radiologist did my embolizations. Dr. Tuffarro did the amputation and reconstruction. I do believe they did the best they could at the time. Almost 10 years have passed since then, I'm hoping for some new options! I was misdiagnosed for 19 years. Had a couple of failed procedures for things I didn't have. Got a correct diagnosis and spent 2 years in a series of embolizations and reconstruction. Spent almost a year in physical therapy learning to walk on my new foot. So, I'm 30 now and the mother of two precious little girls, something the doctors never thought I could do. So, I'm not in your shoes, I don't pretend to know how you feel, but for me, the best medicine is LIFE! I remind myself every morning, that it hurts to walk, but I'm walking and they said I couldn't do that, I get the little girls, they said I couldn't have, breakfast and I drive myself to work, they said I probably wouldn't drive or work, I do my best to be thankful for everything I CAN do, and when I need to, I cry.

Permalink Reply by tania on February 9, 2012 at 11:09am

My dear Amanda,
You make me cry with your story. You are a wonderful woman my dear friend.
My life was (and it is still) full of hospitals, doctors and medical exams.I am just tired of it all and I am wondering when I will get cut a break.As I wrote before (to Kim)I live in a small country ... in a small village ... with out professional doctors and with AVM and a pain and this makes me feel so lonely, sad and depressed. Some times I get scared when I get pain because I know I can not tolerate the pain ... I can not tolerate AVM .. but I am still here keeping faith.
Thank you very much for your support my dear Amanda.
Take care
antonia

Permalink Reply by lesley on February 10, 2012 at 3:51am

Have not had your problem with sores but have had quite a few symptoms. Yes there are days when I feel sorry for myself and yes there are days when I would like to scream at the unfairness of it all and then I see someone who has to drag around an oxygen bottle or I see someone who cannot get around at all and then I count my blessings. An old man once gave me a very interesting answer when I was working one day. I asked him how he was and he said, "I am above the grass." Each extra day you are here is a blessing. Some days are tough, some are even tougher. My entire life for the last thirty years has been a continuous round of Doctors and hospitals. But I have managed to achieve a lot of other things. I had a major operation in the year that Sydney held the Olympic Games and I also had severe RA. I asked my Doctor should I be a volunteer at the Olympics and he said Yes because you will never get another chance. I seized the day and worked at the Opening and Closing Cermonies and had two of the best days of my life. If I had sat back and said no I am too sick and did not follow through I would have missed a great experience.I am having an MRI on Monday for three suspected AVMs.I can empathise with you for your pain as I live with it every day but I try and keep busy to take my mind off the pain. I do care and I am concerned that you have reached that point. Please go and see another Doctor if you are feeling that you are not getting any help.Do you live near Australia?

Permalink Reply by tania on February 19, 2012 at 7:28am

My dear Lesley,
Thank you so much for your message ... I apologize for answering you so late ... My leg is swollen and very painful not only in the leg but also in my back. I went to the doctor last Monday and he gave me peeals and ointment.
Me dear Lesley I'm so tired in a way that makes my soul ache, and makes me wonder how much longer I'll survive this much suffering. I dont know how to manage this condition.
Unfortunatelly I live in Greece which is everything expensive and where they dont have experience in avm

Permalink Reply by Sean on February 13, 2012 at 1:31pm

I have the same exact thing with my right arm... high flow AVMs from my chest to fingertip. Lots of aneurysms, fistulas, and open sores.
5 years ago, Dr. Martin Simons, an interventional radiologist at the Toronto Western Hospital, diagnosed my particular disease as Parkes Weber Syndrome - but, like you, I've had it since birth.Since being properly diagnosed 5 years ago, I've had 3 embolization procedures using n-Butyl cyanoacrylate, and had my first sclerotherpy procedure using absolute ethanol just 2 weeks ago. Like you, the AVM's always grow back worse every time. It's like the Lernean Hydra, where Hercules cut off one head, and two more grew back.
The pain from the sores, lymphedema, deep vein thrombosis' and vascular trashing can be VERY challenging. I take 3mg of dilaudid and 800mg of ibuprofen every 6 hours for the pain and swelling - which works ok... but leaves me nauseous, dizzy, forgetful, and VERY constipated... I find that ex-lax and gravol help. I also write 'to-do' lists to help me to remember things, and set an alarm every 6 hours to wake me up / remind me to take my meds.
I think the worst part is feeling tired and 'trapped'... like I will never escape the pain, or have a good night sleep. I can quickly get depressed and anxious if I think about it too long. There are several things that help me to feel better emotionally... Planning my day, and including things that I enjoy doing - even simple things like going for a walk. I try to do more for other people - like making a nice dinner for friends and family. I also try to make a list of things I am grateful for... these things help with my depression. Not a cure, but they do help.
It is a hard disease you have, and no one will tell you otherwise. BUT, don't let the disease take over! You are more than the pain you feel!!!

Permalink Reply by tania on February 19, 2012 at 7:32am

thank you Sean ...you touch my heart