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AVM Survivors Network

New Member New to Pulmonary avm

Hello everyone as you can see I am a new member. My name Stephanie I am from California am going on 36 yrs. old i was just diagnosed Last October with pulmonary avm after going to hematology, cardiology, and rhumatolgist which said i have fibromylgia and am still not sure. I am thinking thing everything maybe due to the avm. The pulmonary Dr. that am seeing is just as blind to this diease as I am! Out of all Drs. none of them wanted to run a CT or further testing because I am young!!! My mother also has PAVM she was diagnosed over 10 yrs ago since she knew the symptoms from her own experiance she beleived I to had it meanwhile it had been over a year going from Dr. to Dr.; my mother came down to visit from Tx. I had a follow up with the pulmonary she attended the visit with me, she demanded him to run the CT! So here I am they did an embolization and Ill go for another one in April so a couple weeks. However am looking for any answers as I am new to this. I am having headaches blurred vision, I have also spain my right ankle due to my leg having no feeling at times. Iam not sure if the rhumatoligist is sure i have fibromyalgia and Iam taking 3 medications for that. For several years I have had a elevated white cells and lymph I just need so kind of help or info if anyone has any please share. Thank you and appreciate the time you took to read my post.

@ujsbrejr

Welcome! It is great that you found us!

Pulmonary AVMs are rare among rare! This means both that you are very special (great, huh) but unfortunately it also means that doctors are a lot less familiar with it and there are few people in the world or here that have gone through the same.

However, we do have a @PulmonaryHeartHHT group, which is an amazing 22 people these days. Some have PAVM, maybe one has a heart AVM and some have an inherited condition called HHT which often carries with it AVMs in core locations.

Please join the group and I hope by me including the group name above, one or two of the PAVM members will share their experience with you.

I hope this helps,

Richard

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A quick note to say hi and welcome. I hope there is some folks able to pass along some experiences and advice that is beneficial for you. It great you’re here with us and while your type of AVM is rare, I think you’ll find us a lot more understanding about these things than most! No matter where these things are they throw challenges at us! Take Care, John,

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Stephanie - welcome to the family. A couple of thoughts…

When I had my major Embolization last January, one of the symptoms I had was that my right leg wasn’t cooperating very well. When I’d walk (even to the kitchen), I’d have to consciously work on keeping that leg in line - otherwise it kind of wanted to go its on way. Since then, I have had on again off again problems with my right heel and Achilles’ tendon. I haven’t done anything about it - because, well, eyes, ears, voice, headaches all kind of take priority…

As for the headaches - I’m going on 15 months worth of headaches - Persistent Post Traumatic Headaches. Tried a number of things, the main things that have helped so far are controlling and limiting volumes as much as possible, give yourself time before and after to rest your brain and also I’m starting to get a glimpse that propranolol and Zoloft might be helping.

Any other questions, hit me up or ask the group…

We’re all warriors and we’re fighting a beast that is different every time - but we can draw strength from others. I know I do - especially guys like @DickD
TJ

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Stephanie - I can’t really provide any useful info. on your headaches, blurred vision or other symptoms, but I can address your PAVM. I am a relatively healthy individual who had an out of the blue stroke 2+ years ago that was caused by a PAVM, which I never knew that I had. However, the procedure to deal with (remedy) the PAVM was fairly straightforward and “easy” if done by an experienced interventional radiologist. It turns out that I had HHT and PAVM’s are relatively common for those with HHT. If your mother also has a PAVM that makes me very suspicious about HHT being the root cause for you and your mother. Nosebleeds are the most common symptom of HHT, although I am one of the rare individuals that has HHT and had NO history of nosebleeds. You may want to check with an HHT Center of Excellence in CA (UCSF, UCLA) as they could probably provide more useful information and help you determine the best path forward. PAVM’s can be deadly but are also well understood by HHT docs and can be handled accordingly. I hope that helps.

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Thank you, Its always better knowing you’re not alone. Appreciate your welcoming me.

Good morning or after noon for those in different time zone all of your messages were helpful this group is awesome and after my next appt. I will share my experiance with you. Thank you all… Hope everyone is doing well…

I feel I have not made a comment here lately, so here is one now.

I hope God peeks here into this site once in a while to help us all cope, the best way we can, with what is going on with each individual person here! A long time ago I mentioned that way back, in @1980m I found out I had a large AVM in my brain. For almost 2 DECADES, I think, I never knew anyone else who had an AVM!

In 1990, I elected to have brain surgery for my very large AVM. I knew the risk was high, but I was READY to try to fix it! As I have mentioned before, I suffered 2 strokes during 7 brain surgeries! What a recovery it was, but man-0h-man, I never gave up, & fought, fought, fought!! It took a few years to recover, but my ‘2nd Life’, I call it, is MARV!

If anyone wants to talk to me, drop me a message and I’ll share my phone no. I, however, I do not pick up phone # that I am not familiar with, so if you call, please leave a message, & I will call you back. OK?

Lisa A. Stuckel

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