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: 624
Latest Activity: on Thursday

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Pelvic avm news!

Started by Msamberxo. Last reply by Jaycee on Thursday. 2 Replies

Mayo Clinic Doctors

Started by Emarie. Last reply by Emarie on Tuesday. 5 Replies

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Comment by Amyfromkaty on January 31, 2016 at 2:27pm
Hello everyone. My 8 year old son was diagnosed with an AVM in his left masseter muscle. They are going to remove the entire muscle. Can someone please tell me what we can expect in terms of healing,pain, time frame for recovery, etc.? I just want to prepare him and myself for what lies ahead. Thanks!
Comment by lesley on January 30, 2016 at 11:00pm

I am waiting to see if there is any improvement by wearing the stockings. If I told him that it is no good he would see me straight away. I am trying hard to keep my foot but at the moment i don't hink it is going to happen. Because i also have Cowdens Syndrome and have had heaps of operations I am reluctant to rush an operation unless it is absolutely necessary. One good thing is that I have a very high pain threshold. The dr knows that if I start taking pain killers every day then I am ready but I am not at that point -yet!!! It's just as hot and humid today 35 degrees and 80-90% humidity. Not fun with the stockings but I will see what happens.Best of luck in deciding what you want to do.

Comment by Mychal on January 30, 2016 at 10:41am

Lesley- why are you waiting 6 weeks before seeing vascular surgeon? Are you hoping your foot pain/function improves, is the surgeon schedule busy for the next weeks, or something to do with the health care system in Australia? It sounds like you are in a lot of pain (now) and pretty limited in what you can do for fun or work. I really appreciate having this website/fellow AVMers input to help. Each of us can learn from one another, before choosing what seems best for us. Once I have gathered all of the treatment options information (including likelihood of condition improving post treatment) I will try to select a path that keeps me participating in life as fully as possible. Some of our fellow AVM members (who have the option) suggest life with a prostetic limb is less impactful to the quality of their life than living with the AVM. It is a difficult choice to make... but as everyone afflicted with AVM will agree- there aren't any easy choices/options. Here's hoping you have a pain-free day in the hot Australian summertime!

Comment by Mychal on January 30, 2016 at 9:54am

Thank Lesley for the thoughts/input. Yes, the Radiologist who made the diagnosis is an interventional radiologist. He suggested that I see a local vascular surgeon who has experience with inserting arterial coils. We will follow his advice. I understand the surgeon will assess whether the AVM is fed by an artery large enough to insert a spring. The answer to that question will determine next steps. We are hoping the inflammation slows its progression for awhile. It is getting tough to walk without significant pain/limp and getting shoes/boots on (yes, its winter here in Colorado- it snows a fair amount. I'm normally the primary snow removal person at home/for elderly neighbors/at the office. AVM causes us all to re-assess our routines. I really don't like compression stockings... (can I whine now?)

Comment by lesley on January 30, 2016 at 12:56am

I think that you need to see an Interventional Radiologist. Is your Radiologist one who knows about our condition If he/she is not then you need to talk to someone who knws a lot about it. i have 6 AVMs in the ball of my right foot and am unable to stand on the toes of that foot at all. At present I am waiting for 6 weeks and then my Vascular Surgeon said that he will probably get the Interventional Radiologist to work on it and then if that does not work then he will have to do a forefoot amputation. At present the temperature where i live is 35 to 40 degrees Celsius and he asked me to wear the compression stockings 24/7 to see if that helps. He told me why he cannot just take out the AVMs as if he did one or two the others would bleed as they are all mixed up together. Make sure that you have checked all avenues before you get an amputation. Yes it is painful and yes it is very hard to put up with. I am lucky I live 200kms away from one of the best vascular surgeons in Australia. Hope that helps and i hope that you find someone good.

Comment by Mychal on January 29, 2016 at 7:24pm

Hello Everyone,

I am newly diagnosed with AVM on the bottom of my left foot (primarily heel area). The MRI earlier this week confirmed the malformation... the MRI also seems to have irritated the AVM as its hotter, swollen, more painful then I recall it being.

The Radiologist suggests I have small spring placed in an artery in my ankle to clog the blood supply going to the AVM in hopes that it will die. In reading some of your posts, it seems that has been tried with varying degrees of success.

I think for the moment I am going to slow down, learn more from you all and other resources and figure out what to do next.

I appreciated hearing that amputating the foot (if it becomes too much to live with) is an option taken by others (who are glad they did it),

Comment by tinkersyl on January 26, 2016 at 5:30pm

I'm sorry it's been awhile since I have posted. I am up for another angiogram/glue/coil/ethanol embolisms, this time I have 4 AVM,s and 2 AVF's...I get this done Feb 1st. It seems like the doctors are slowly chipping away at my leg....kinda frusterating....

Comment by Nico09 on January 25, 2016 at 11:04pm

I have an AVM on my right jawline. I've had embolization and surgery to remove it about 6 months ago, but I can already feel it growing back, it feels exactly like it did before surgery. I am having an MRI soon.
I'm worried that I'm going to have to have surgeries for the rest of my life....surgeries that are never going to cure it.
Is there anyone that could make a suggestion for a reputable doctor anywhere in Canada?
I have been reading about Dr. Yates and his clinic in Colorado. I don't think we have anything like this Canada. I would really like to go to this clinic, but I can't even imagine the cost it would be to receive treatment in the US. :(

Comment by Westwin on November 8, 2015 at 10:35am

Procedure at Children's Hospital cancelled due to age, BMI and hypertension. Being referred to another hospital now this time in CT. Entire process has to start over, for the 4th time. Balancing between "gee maybe this isn't so bad that I really need treatment", and "can I please get this over with".

Comment by happy on October 24, 2015 at 1:49pm

Westwin, I have been reading all of the comments and experiences from our group of AVM survivors and as you can see we all have different experiences. I had my pelvic AVM diagnosis in Oct 2011 and the embolization was done January 2012. My procedure was done by an interventional radiologist using glue. I had 4 branches on my right side and 1 on the left. My treatment has been very successful to date. Just wanted you to be aware that the symptoms for a pelvic AVM can change quickly. From October until my treatment in January I was approaching congestive heart failure. I was walking with a cane because of great leg weakness, general weakness and short of breath. An EKG was done about 3 weeks before my procedure and the primary care doctor said it looked like I was having a heart attack. However, because of lack of blood volume there was nothing to do at that point but rest and limit activity. Take all the information that you can find, but make sure you choose the best doctor you can find. May God direct your decision.
Happy

 

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