Life expectancy?

[Miriam]

Hello all,

I’ve been thinking about this for some time now (okay, years) and was wondering if anyone here might have an idea about the answer: does having VMs reduce your life expectancy? I’m thinking the nice collection I have all along my left arm and on both legs might, if left untreated, put me at a greater risk for heart attack or stroke. I get a new "lump" every six months or so and after a while, I swear, I’m going to have to rent storage space for them. : This could be a problem. On the other hand, perhaps I’m just being paranoid. Any ideas? Input much appreciated!

M

[imported_missy]

I have never heard that questioned before. Hmmm...

Actually, I'm more concerned that you get the treatment you need, whether it's for the VM's or the paranoia!!

I'm going to pass your question up the ladder and see if anyone has any research they can point you to.

Meantime, reassure me that you're getting treatment!

Missy

[imported_missy]

Miriam,

Linda Shannon DOES have some research resources on this and promised to get them to me as soon as she can find them. From what she said, it's in a book she owns and she says that she will look it up when she gets home!

Thanks,

Missy

[Miriam]

Thank you and Linda for looking for the information. I really appreciate that. I searched online, but couldn’t find anything specific. What I did find, though, suggested that significant VMs in the arms (and it seems many people have them in the left arm) could weaken the heart over time.

Except for the VMs, though, my health is all right and I have no other reason to believe my life expectancy would be anything but normal (so, 70 years or so). I’m quite careful with my diet (I shared an office with a doctor for a few years and was pestered into eating properly ) and don’t smoke, so I’m not giving my circulatory system any extra problems. As for treatment, I’m not involved in any right now, but I am researching the options. But don’t worry, I’m not ignoring my health, I promise. ;D

Thank you again for checking on this,

M

[juliemn]

Hi Miriam,

Good question! I'm looking forward to hearing long term treatment options also. Ben's only 3, so I'm still in the here and now...but will definitely have to address this at some point.

Julie H
(mom to Ben)

[imported_missy]

Miriam,

One thing Linda has said is this:

"I need to see a picture. If over 40% of her body is hypervascular due to extensive lesions, she needs blood work done to rule out thrombocytopenia which is basically an overload of blood in your system and can lead to stroke or death. Not saying this could or will happen to her. I need a picture of how extensive it is. If it is superficial, we have had adults with 75% of their body covered in stain and no underlying issues because it only involved the capillaries which are located in the dermis and so they have no negative impace on the nervous or circulatory system. It's when the lesions become massive tumors or deeply involved that they can clot or overload so I will write to her and ask for more details. I'll post on the site tonight."

So, I believe she'll be back with some questions for you. I'm sorry she's been so busy lately (I don't know how she manages it all), but she hasn't forgotten about your question.



Missy

[Miriam]

A huge thank you to you and Linda for looking up this information! It's not so easy to find (but you already know that).

I need to see a picture.

I’m afraid I haven’t got any pictures that show them. None of my AVMs are very large, but some are deep enough that while they hardly show on the skin (no blue mark), if you press you can feel quite a lump. Really, what worries me is the progression. I keep getting more of them, particularly on my left arm.

If over 40% of her body

Well, waist to toes on both legs and shoulder to fingers on the left arm. Most are fairly small, but there are a lot of them (I’ve lost count). I do remember being told some of the ones on my legs were too deep to operate on, but that was back in the 80’s. I was also told last year that not many doctors would be brave enough to try to treat my hand, but I’m not really convinced of that.

It's when the lesions become massive tumors

I don’t know if this is common, but I did have a rather strange problem when I was about eight. According to the doctors, I caught strep throat, which caused a medium-sized AVM on my arm swelled up to "baseball size" and then break, giving me blood poisoning and putting me into a coma for quite a few hours. Again though, I was little and all I remember is having a sore throat, mildly sore arm and feeling sleepy. I lay down for a nap and woke up in the hospital. The doctors never were able to pin-point exactly what happened. If it really was AVM related, it would be something parents of kids with AVMs need to watch out for when their children have infections.

I'm sorry she's been so busy lately

Heavens, considering all the good she’s doing out there, I’m happy she’s busy (presuming she’s not working herself sick, that is). More power to her!* ;D

To Julie H.:
Just wanted to say hello! It seems like treatment options get better every year, so hopefully by the time Ben's ready for treatment there will be something even more effective that what there is now. He’s lucky to have a mother (or guardian?) who’s looking out for him. My best wishes and prayers for Ben.

M

[KristieinStMarysGA]

Hi Miriam,


My name is Kristie and I am 26 and have a VM througout my left elbow/forearm, I am under the care of a Vascular Anomalies Specialist in Colorado, who I travel to see from my home in Southeast Georgia. So far I have had one treatment of Sclerotherapy and I am due for an MRI to see how the VM has/hasn't changed. I know how frustrating these things are and I can sympathize with you!

I just wanted to say HI and hopefully everything will work out for you and you will find treatment that works for you! If you ever need to vent feel free to message/e-mail me


Kristie

My husband has multiple Avm's throughout his left arm and when they did the angiogram they pointed out their major concern. The artery going to the left side of his body which is supposed to be smaller than the artery going to the right side of your body was twice the size of the one going to the right side of his body. This was because the artery was slowly growing to componsate for the blood flow that was going into his left arm. This much blood flow was due to the multiple avm's that were not sending the blood on the right path. The only reason we are getting treatment for his avm's is because they feared he may go into congestive heart failure. We are now doing alcohol embolization through Dr. Wayne Yakes to try and close off some of those veins or vessels or whatever they are that go nowhere and do nothing but pool blood and grow. While most people have no serious physical affects from AVM's of the limbs, and most lead a normal life without treatment or complication. It might be a good idea to have an angiogram and a echo to make sure that they aren't putting stress on your heart.

Something else.. my husband is 24 and he never had any big problems with his avm's until last december. His arm had been progressively getting bigger since birth. But we noticed more and more of an increase in the last 4 years. He had an increase in pain and swelling in his arm, especially in the heat. In July he was admitted into the hospital and had to have 900cc of fluid pumped from the sack around his heart. He had played in HoopFest (a 3on3 basketball tournament) the previous weekend. That is one the cautioned us about CHF and told us we should look into treatment to take the stress off of his heart. Any infections of any kind can cause them to progress at a faster rate. Just to let you know, they can work on your hand. Drew's ring size is 17. His hand is huge due to the avm's but we have seen some decrease in it since the paracardiosenthesis in July. I would definately be safe and have some tests done, instead of waiting till something drastic happens. We thought he was in fairly good health too.