VM’s and AVM, there’s a party in my legs

Hello, I’m Sarah and I appear to be the unwilling host of a vein and artery party in both legs. I’ve been putting off writing this for a while as it makes it all the more real but I’m getting a bit desperate…and desperation is never a good look.

I’ve had a venous malformation in my left lower leg since I was 9yrs old. It’s had a lot of surgery and various things poked in it, up it, down it etc. Whatever procedure it had, just seemed to aggravate it and so it has joined forces with arteries; hurrah! Oh and the right leg has also joined in. It’s got its own party though, it hasn’t created some devil’s spaghetti type bridge between the two legs.

Leicester Royal Infirmary are unable to help and more because whatever they do seems to make it worse. Oxford hospital said it’s unlikely they can do anything and a private consultant has said pretty much the same. I am off on long term sick as I’m unable to sit for any longer than 10mins due to pain, standing is also a problem. I have a venous malformation just behind my knee, so driving isn’t fun either, plus my foot goes numb. I am on gabapentin 2100mg, co-codamol (30mg/500mg), tablets of happiness and zopiclone to help me sleep.

I worry about keeping safe as I often have dreadful unwanted thoughts running through my head. I have to stay here though, I have a daughter. I keep telling myself I’ve put up with it for 34 years, I can do it a bit longer. I’m just so tired.

2 Likes

Sarah,

Hi. It’s great to hear from you, though it sounds like you’re having a hell of a time. I don’t know much about extremity AVMs so I’ve added you to the @Extremity group and I hope some of the others there can empathize and offer support. I love your sense of humour, though I realise it is driven by desperate times.

I’m in Leicester as well. You’re not alone. My AVM is a brain DAVF.

Very best wishes,

Richard

Hi Sarah
My 17 yo daughter has an AVM in her leg too, and she also struggles to sit and stand. The bugger has been removed 3 times but returns with vengeance. I’ve always been amazed at her strength to manage the pain, and she refuses all drugs until the pain is 9 or 10/10. Her AVM is smaller so I can’t imagine the challenge you face with a larger one, or in both legs.
I thought I’d also let you know there is a Facebook private group for extremity AVM’s and they are very active. It’s called Extremity AVM’s.
Stay strong yourself. The AVM isn’t going away, but neither should you! Xx

Sarah,

You sound like a brilliantly strong individual with so much passion! I can only imagine what kind of pain you are in, and my AVM is localized to my left foot and ankle. I admire you having stayed strong for so long, I can’t imagine what it’s taken. But, you are not alone. This community has already made me feel more at peace with the endless pain and uncertainty, knowing that you always have someone on your side. May I ask, how do you feel the gabapentin does in terms of helping with symptoms? I have taken it before and did not find great relief. And I have had multiple embolizations via my femoral artery to try and reign in my crazy lump, but doctors are also stumped as to why it just won’t go away and keeps popping up in new places. Do you know what procedures you’ve had? I wish you well, and want to let you know if you ever need an ear, I’m here if you need :slight_smile: Welcome, and hopefully you find a home here :heart:

Hi Sarah!
I should say wow girl…34years?! I reading yours and keep saying to myself if she done it m, you can do it, be strong.
I coping with this pain 21 years, fighting with the pain. It’s hard,I’m struggling and don’t know if there is an option for me?!
Pain one side and try to explain to others what you going throught another pain.
I’m so glad I joined this group where I can express my feeling with people that walking in my shoes.
Hope we be free from this pain.

It’s difficult when you are dealing with pain, heat, numbness and are forced to be less active and mobile than you’d like to be. I have an AVM in my left foot that has been tough to manage- probably impossible to kill. I’ve had six embolizations on it over the last two years. I think it’s finally in remission or at least slow growth mode. I have to give credit to Dr. Chris Hampson MD who is the Interventional Radiologist who performed the treatments on my AVM. He has been a small vein and artery specialist throughout his career. He practices medicine here in Grand Junction, CO. If you feel you are running out of medical options you might email him. You will find him accessible, capable and kind. Two years ago daily life for me was so difficult, I met with an orthopedic surgeon to review my situation and prepare for lower limb amputation. I’m glad I didn’t decide to have the limb removed, because I’m now able to wear the same size shoes and walk or bike ride without pain, limping or fear of spontaneous bleeding. As you know, none of us are sure we won’t see the little bugger return- sometimes bigger and worse than before- I’m doing what I can to enjoy the moment. It’s springtime here in the Rockies of Colorado- a nice time of year!

1 Like

B_s_Mum – while I applaud your daughter for managing her condition and being so pro-active I did want to mention that not making proper use of pain medication isn’t helping her in the long run. Waiting until her chronic pain it at a t 9 or 10 before treating it fundamentally isn’t good management.

When you have chronic pain your blood pressure goes up in response, studies have shown high blood pressure helps reduce how pain is felt so when you have chronic pain you may start to have chronic high/higher blood pressure which in term may result in other health issues (links below).

One should never “tough it out” with pain but rather use pain managment medications as a vey important resource. Not only will it improve quality of life in the short term but it may very well make a very large difference in the long run.

https://www.managedhealthcareconnect.com/blog/chronic-pain-and-development-hypertension-are-they-linked

azurelle