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AVM Survivors Network

Introducing myself

#1

Hi all! I have been snooping around on the site for a few months now and have been feeling so humbled by everyone’s stories.

My experience is a little different and in some ways I am quite lucky- Due to a genetic medical condition (Hereditary hemorrhagic telangiectasia) passed down through my father’s side of the family, I knew at a young age that I had a 50% chance of developing HHT (and therefore very high chance of having AVMs) and got tested early, before any rupture. The diagnosis was confirmed and 13 years ago (at age 12) an angiogram confirmed AVMs in my left frontal lobe and right posterior medulla. The AVM in my frontal lobe was treated with cyberknife, while the other, in the medulla, was in too sensitive of an area to treat and I was told should just be kept an eye on via angios every couple years.

…Then 13 years went by where I neglected to have it looked at (though I should note I did have pulmonary angiograms done and embolization for several pulmonary AVMs found during this time lapse). This past November I finally went in for another cerebral angio, and it was discovered I actually have yet another cerebral AVM which wasn’t seen previously, in my left fronto-parietal lobe, which also has aneurysms intertwined. I’m now scheduled for an embolization in a couple weeks, where they’ll also be performing another angio to help determine whether a craniotomy is going to be needed afterwards.

I know I am incredibly lucky that my AVMs have not ruptured and that I live in a part of the world where I have access to great care, but I’ve still been going through a lot of anxiety about all of this the past couple months. This site though and reading the stories of people who get it has been keeping me going. I wanted to finally post mostly because I want to let others know that you are not alone in what you’re going through. Please reach out if you are going through similar experiences and have any questions or just want to talk about it! Thank you so much everyone for sharing your stories and allowing me the space to share mine!

-Celeste

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#2

Celeste,

It’s great to hear from you. I’m really pleased that you’ve got so much from this site already and even more motivated by your decision to give a little back by telling your story.

I hope your embolization will go well. It’s the one type of operation I’ve had and I found it so OK, I was fine with having another if I needed it. As it has turned out so far, I’ve just needed the one.

HHT is quite the tough deal! As you say, you’ve found a number of AVMs and aneurysms over time (and it does sound like you’ll find more, I guess). In many ways, it is fortunate that HHT is not common but it makes it more difficult to find support. Do join our @PulmonaryHeartHHT group, as by including that tag in a post, you can reach out to the whole group. We have about 20 active members in that group.

Very best wishes,

Richard

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#3

Hi Celeste

Thankyou so much for sharing your story and sorry to hear about your diagnosis.

I have been looking at the forums on this website on and off and was trying to find someone whose had their PAVM embolised.

My pulmonary AVM was accidently discovered in May 2017 which then lead to my diagnosis of HHT. I am yet to get my AVM embolized and was windering if you could please share some information on post PAVM embolisation experiences.

Just wanted to ask if you have had any issues with the PAVM after its been embolized and how long has it been since you have had it treated. What the doctors exactly did to close your PAVMs? Sorry if I am not making complete sense but I am trying to gather as much info i can to prepare myself for the operation.

Thanks in advance
Pawan

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#4

A quick hello and welcome Celeste. Really glad you shared your story, and it is without doubt you’ll be able to add a great deal of knowledge and experience if you choose. Hopefully we can be of help and support to you as well! Take Care, John.

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#5

Hi Pawan,

I actually have several (6+) avms in my lungs in addition to the cerebral AVMs. I’ve had embolization twice for PAVMs, and still have a few more remaining that are too small to need embolization. The first time I was pretty young and able to be put completely to sleep, (so don’t really remember much now) but the second time was more recent (2015). Have you had an angiogram done before? If so, the embolization experience was pretty similar-- except much longer and quite a bit more uncomfortable, lying there unable to move for maybe an hour if I remember the time correctly. But afterwards, I was able to lie flat for a couple hours and then go home the same day, and did not have any issues or complications at all, able to return to work within a couple days. Only thing was a small scar at the groin where the coils are placed to go through the artery and up to the lungs. It’s really a pretty easy and minimally invasive procedure! Though I don’t know if things would be different at other hospitals with less expertise. I’m lucky to live close to a large academic medical center (and HHT Center of Excellence) where there are experts who have done a million of these procedures. Have you gotten in to an HHT Center of Excellence yet? Highly recommend finding the nearest one and doing so if not.

As for what is specifically done to close the PAVMs, there are coils placed to block the blood flowing through the abnormal connection (where the AVM feeding artery is). The coils stay there after the procedure, and I believe eventually cause the AVM feeding artery to clot and basically disappear. But you won’t have any feeling of this after it’s treated, and the only “feeling” of it during the procedure is just general discomfort (at least in my experience).

Overall from my perspective it really wasn’t bad at all, the idea of it was scary but after the fact, not worth stressing over too much!

PS I’ve never met anyone outside my own family who has HHT, so great to virtually meet someone else who can relate!! Feel free to ask me any other questions you might have! Sorry if I missed responding to any of your post. Have you spent some time on the Cure HHT website already? I also think they are more than happy to answer any questions and will help you find the closest HHT Center of Excellence if needed.

-Celeste

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#6

Hi Richard,

So glad to hear that the embolization you had wasn’t too bad. I am actually not too worried about it either, especially since I’ll be able to be completely asleep for it unlike embolization I’ve had as an adult for PAVMs. Just hoping this is all I’ll need for awhile.

Yes, it does seem more AVMs can be found over time with HHT even in areas previously screened… Sort of confusing to me as I have read a lot of the literature suggesting that AVMs are “always” there at birth. My only guess why this could be is that maybe some telangiectasias (which as basically mini AVMs) are too small to detect but then grow large enough to be considered AVMs eventually? Or perhaps the logic that people are born with AVMs simply doesn’t apply with HHT, who knows!

I was not aware of the HHT group on here and am looking forward to checking it out, thanks for sharing!

-Celeste

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#7

Thanks John! Looking forward to connecting with everyone on here!!

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#8

Celeste

Your description of embolization is exactly in line with my experience, so I think common to embolization generally.

I think AVMs may be congenital in general terms but my assumption is that for HHT, that is not necessarily true. My AVM is a dural arteriovenous fistula and current theory on those appears to be that they are acquired rather than congenital. So, there are multiple causes and I think HHT may well be a cause in itself. As you say, they could be born out of the telangiectasias.

It’s great you found us. I’ve tried messaging a PAVM person, too, but they’ve not taken the bait yet :slight_smile:

Very best wishes

Richard

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#9

Celeste, lifeisgood here! I read your story. I felt the relief and sense of belonging you have expressed at finding this site. I had a craniotomy 25 years ago for a ruptured, cerebellar AVM and felt so isolated by its uniqueness until I accidentally found this site. In sharing your experiences, you will help others and they in turn will lend significant support.

You have helped me. I have never heard of HHT and this is humbling, as I was a critical care RN. (Perhaps, like AVMs, little could be done to treat them years ago?). So, please continue to share!

Appreciatively,
Lifeisgood

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#10

Hi Celeste

Thank you so much for replying and taking the time to answer all my queries. I havent had an angiogram but I have an idea now of what to expect during embolization. I have been devastated ever since I found out about HHT but your story and courage has inspired me a lot and I feel better to know that I have an HHT buddy now:)

I wanted to ask a few more questions if you dobt mind please.

I’m only aware of one PAVM in my right lung which was found during a CT scan and I have had MRI head which was clear in April 2018. My question is, have you always had the same number of AVMs in lungs and brain since your childhood or have they increased in number over the years? And from your experience do you think if an MRI is a decent method to detect AVMs in braiN?

Is pavm embolization a life long treatment for a particular avm? And coil is ok to stay in lungs forever? Sorry if I’m annoying you with my silly questions but I am asking because you have met doctors and specialists who might have discussed these things with you whereas I still haven’t seen any doctors but I will soon once my finances are all sorted.

Also, how do you deal with everything mentally? Sorry if it’s personal but I don’t have anyone who I can relate to apart from my sister and father who also have HHT. I don’t like discussing these things with them that I’m still angry and havent accepted my diagnosis because this will only stress them.

Thank you so much for your time and support. Xxx

Pawan

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#11

C,
Prays God that you are here w/us! I have been dealing w/my AVM for almost 40 YEARS, & it fascinates me of all the new technologies are out there for people like us!! Good luck, & lots of prays go to YOU!
Elizabeth (LIsa) A. Stuckel

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