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AVM Survivors Network

PAVM - Hide and Seek

#1

Greetings all,

It’s been a long time since I’ve been here and I forgot how much I missed you all! Thanks for reading (and perhaps responding to) this post.

I had a PAVM bleed/rupture on Sunday and was admitted to the ICU. I have more than 100 PAVMs … and the problem is that I stopped active bleeding before all the scans were preformed and they don’t know which AVM was the culprit. They drained all the blood from my lungs, preformed two embolizations (that makes 41 to date) on the biggest AVMs and told me that there’s no way to know if they got the bleeder.

They say that performing embolizations on 60-90 more AVMs is just not a viable option right now, and I understand that. They also said that more bleeding is unavoidable and the best thing I can do is have a stong emergency plan in place.

I’m back home this evening with minor restrictions and cough suppressant. I have to admit that I’m a tad frustrated and nervous … and I’m wondering if anyone else has heard or, or been through, a similar situation.

As always, thanks for your ear and support!
Joshua

#2

Joshua I am so sorry! I dont have anything like you and feel terrible for you.
I hope you have a medical bracelet and have support
Very scary -
Thank you for sharing your story
Angela

#3

Hi, Joshua, it's nice to see you here, though I wish it were under better circumstances. I think it may also be helpful for you to look into the FB group HHT International, as though we are getting more members with pavms these days (and I am still hoping someone will start a subgroup for those... hint, hint), you may get more information on the Facebook group. The moderator Trish is very well informed, and may know more about situations like yours and how they are being managed.

https://www.facebook.com/hht.org?fref=ts

#4

If you do get information on FB, Joshua, please share it here for other members.

#5

hi Joshua, I have no idea what PAVM is, sorry, I just thought I had one (which bled twice giving me stroke,)- first time I hear there could be more than one in any body....

how did they find them?
how are you now?

#6

Thanks Dancermom,

I will take a look at the group … however, despite what the docs originally thought, I don’t have HHT.

I’ll definitely share any information I find.

(And I’ll consider helping with a sub group … Things are just extremely busy right now)

#7

Hi Astra,



The P just means pulmonary … and pulmonary (basically) means lungs.



So - most of my AVMs are in the arteries between my heart and lungs.



They found the first 7 AVMs on an X-ray. They typically wouldn’t show up on that test, but mine were really big. The rest were found by CT scans and angiograms.



I’m doing okay now, just a bit tired of all this.



Thanks!

#8

Dear Joshua,

I am so sorry to hear all the difficulties you are going thru. My AVM was in the brain it did bleed

and I did have a stoke. Your case is very diffent but I am curious could they perform some kind of gamma knife or cyber knife. I had an embloization with glue on the feeder that blead but too many other to try to fill so I opted for the GK just a wait and see now.

I pray for the best for you and that there is some new research in the ten years that will help you.

Payers and hugs,

Niyani

#9

Hi
Inhave had 18ncoiled and many more to go, I have not had any bleeds but I'm terrified everyday, my oxygen is low and I'm on am oxygen machine which sucks real bad, can u tell me more on how u great bye , and what is a syptom on a bleed.

#10

Hey Joshua - my prayers are with you

I know this has probably been exhausted, but have you reached out to multiple ‘experts’?

My journey is just beginning, but it is genuinely frightening

#11

sorry… accidentally submitted

My point was doctors/ surgeons are frighteningly unfamiliar w my AVM & either grossly underestimate its severity or try flat out lying to me opposed to admitting they do not have experience and are not equipped

… hard deciding which is worse

Just home after 8-days in hospital for ‘basic’ 2-hour procedure that took over 6-hours & additional surgeons w a baseball sized Pseudoaneurism as consolation prize

My situation is not NEARLY as delicate or complex & I will likely be treated out of state going forward ---- leaning toward Birthmark Center in NY

Good luck brother and you are definitely in my prayers

#12

Joshua, so sorry to hear of your recent troubles. I must say I've never heard of anyone with as many AVMs as you have, pulmonary or otherwise. I guess you are extraordinary in many ways :)! I do hope you find some help. Best wishes to you, Be well.

#13

Hi Joshua, I have a large PAVM in R lung which they are planning to remove by lobectomy. While the AVM area is large and complex with multiple feeders (and hence can't be embolised), I don't think it's anything like as widespread and complicated as yours sounds. Like you I don't have HHT (and everyone is a bit puzzled by that, there seems to be an assumption that PAVM = HHT, which annoys me).

I did have a recent incident of multiple minor strokes post emergency abdominal surgery for an unrelated problem. This has left me with an ongoing moderate disability in my right hand. Likely culprit was the AVM shifting clots from my veins to arteries and hence to the brain. This is the first time (in 52 years) that the AVM has caused anything other than shortness of breath - so I count myself lucky!

I wish you all the best and please keep us posted.

Kate

#14

Hi Joshua. My son has a deep-brain AVM so I can offer nothing on your different experiences but I understand your frustration. However I do have a really good emergency plan in place for him which I'll share in case it can help you.
Firstly he has a medic alert bracelet with a chip that can be inserted into any computer anywhere in the world without needing any software download. The chip has a copy of all his scans, relevant medical reports and contact details for all his specialists.
As to the rest, I don't know where you are so don't know if you have these systems in place in your country but it could be worth finding out. I'm in Australia btw. Not sure if it's only if your condition is life-threatening either as my son's is.
Telephone - your line can be registered with the telephone company so that if the lines go down yours is a priority re-connection.
Ambulance - he is registered with the ambulance. They have a copy of his scans and all relevant medical contact details. Should they get a call about my son he is a priority 1 so is prioritised to the top of the list. A doctor will also come online with the paramedics to advise them of what to do.

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