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AVM Survivors Network

Any idea what this means?

Ok I probably shouldne even be attempting to figure out radiologist talk but I am scared. Yesterday for the first time I read ALL the reports from my CT scans. And it freaked me out even more.

It says how they believe its a AVM of the lung but it doesnt present as a typical lung AVM, its"unusual" and heres the part that confuses me...

The exact words are actually this....(and underlined is what really gets me)

"Serpiginous nodular density in the right lower lobe anteromedially
extending into the paraspinal area probably represents a small unusual
vascular malformation. This does not have the appearance of a typical
pulmonary AVM on these limited images, contrast enhanced CT scan of
the chest has been recommended."

I then got a CT with contrast though and it stated..

"Tubular enhancing structure in a right lower lobe medially probably
reflects a vascular malformation."

But the underlined is what confuses me... I am trying to figure out how it extends to paraspinal area???

Does this mean i could have some form of a spinal avm too???? Of maybe I shouldnt think of that part anymore because that result wastheCT without contrast?

Anyone have any idea? any at all? I've been trying to lookuo anatomy between the lung and "para spinal area" and havent found much.. so maybe someone with more anatomy experience would have a clue...?

I am going to be crazy until my appointment on April 5th :(

Thanks again everyone,

Kelly

Hey Kelly,

I'm totally not an anatomy expert so I don't feel the least bit confident in responding and I think many other members are probably just as confused with the medical speak as you!

Honestly, reach out directly to some of the other members with lung AND spinal AVM's. Ck out their pages and read their info. I bet you'll find someone with words included that sound similar and then send them a message. Or you could just send a general message to all the ones you can find and ask specifically. Someone is bound to answer.

I'm just afraid your post will roll off the main wall before the right people see it.

Good luck for sure!

Shalon

Hi Kelly,

I'm usually on the side of getting more information, but when it comes to trying to interpret your own radiology reports, I'd consider trying to just put it out of your mind till the appointment. There's something about the way they write the reports that breeds panic and confusion. Only your doctor can weed out what's relevant and what's just the radiologist's best guess. Hang on till the 5th!

JH

Hi Kelly,

We had similar issues, only it was in trying to understand what we were reading in medical journals (back about 1990, before a lot of this was online!).

We must have been funny since we'd print off these articles, then using a dictionary, start writing the definition of words in the margins.

What we finally ended up doing: Made an appt with our Gen Practitioner, took the articles in to her and said "Pls translate this for us and tell us what it means so we can understand it?" She did well, but had to consult her books for a few terms also.

Worth a try, or your neuro the next time you are there. NOW, our daughter is an Occupational Therapist, and as a result of her training, she either understands or can cipher out what a lot of this stuff mean for us! So we are really getting paid back for supporting her through six years of college/med school!

Ron, KS

Kelly,

As others have said above, talkto your doctor, have the report in hand and ask them to define it for you. I did do a google search on 'para' and I believe it means in the area of, or locality of. I know how hard it is to try not to freak out, but you must try to stay as calm as you can. I'll be thinking of you. Let us know what your doctor says.

Kim

(I have a spinal AVM.)

I also had these in my reports for me it meant I had other small avm’s throughout my body but they weren’t big enough to worry about. I know someone with a spinal avm and with this he cant fully use the lower part of his body. If you have full control over your legs and hips I wouldnt worry to much about it too much…let us know what happens…You will be okay just calm your mind :slight_smile:

Hi Kelly,

I done some research for you and from my understanding the Paraspinal area runs along side the spine such as in this paraspinal muscles image read the article here. "Anteromedially" translates to "located in front and toward" So my best guess would be they are are saying it is in your right lower lobe in front of or near the paraspinal area. Serpiginous nodular AVM may look something like that. I agree their description is a little hard to translate, however I hope this helps take the edge off until your appointment..

Hi everyone,

First of all, I want to say thank you so much for all of your replies, I am so thankful for each of them.

I also just wanted to give a little update since I asked this question...

Today I had my appointment with an interventional radiologist, and for the 1st time since the AVM was discovered I feel like I talked to a doctor who actually knew about pulmonary AVMs!

He confirmed to me 100% it is a AVM (I was scared it could have been a tumor or something and the last doctor i seen couldnt really tell me for sure if that was out of the question or not, he just said "well your young" which wasnt very comforting in thinking about weather or not I could have lung cancer!! So that instantly had me feeling much much better.

He said we have 2 choices, to not treat it and risk stroke, and/or brain abscess! or embo it. which he of course said to do!! he also told me that when anyone in the Massachusetts area is diagnosed with a PAVM they get sent to him (he is out of mas general) so that was reasuring to me because I couldnt find many doctors who have treated many of these right around me, I found some who treat them in the brain but finding a doc who treated them in the lung seemed harder. So I feel comfortable with him, plus it will be done at mass general hospital so God forbid if there are any complications I will be in a place with some great doctors. So i went and booked the operation for april 12th, a week from today!! I am very nervous, part of me just wants to not treat it out of fear which i know is not a smart choice, wish this is something I could just forget about!! but I am going to try my best to face this fear.

Also, another scary part for me... He said how a lot of times when an AVM is found in the lung it is related to the gentic disorder HHT... so he is referring me to someone to do a brain MRI (i am sooo scared I have one in my barin as well :( so depending on the result of everything my 3 small kids will be screened, which of course, is beyond scary :(

So thats where I am at. I just want to thank you all so much for your thoughts and support. I am keeping you all in my thoughts and prayers as well...

Oh and to answer the question I asked in this original post, just in case any of you are curious.. when the CT report said

"Serpiginous nodular density in the right lower lobe anteromedially
extending into the paraspinal area probably represents a small unusual
vascular malformation."

its not thAt it actually spread out of the lung.. they just worded it PARASPINAL to give an idea where IN the lung the AVM is.. which is also a relief, because I thought it might have been some kinda spinal AVM as well.

Hi Joe,

He explained to me that the lungs are like filters, so he said the risk of bacteria or a blood clot slipping through where the AVM is in the lung and traveling to the brain(or anywhere else) is higher than the risk of it bleeding. I thought it was interesting too though, because I remembered reading your story and a couple more stories of people with PAVMs bleeding, this doctor told me the risk of it actually bleeding was pretty low, but like any other vessel could bleed but his opinion the stroke/brain abscess risk was highest. I hate the different docotors have somany different opinions on this, not very comforting. But you are living proof the risk of bleeding is very real.

He said those 2 options.. he 1st said the option of not treating it, then went onto the second option of treating it and why and pretty much said "so you have to treat it" kinda contradicting, but I got his point of why it should be treated with risks like that. I am still very nervous about the embol.


Joe said:



He said we have 2 choices, to not treat it and risk stroke, and/or brain abscess!

I find this interesting that he said if this is not treated you risk a stroke and or a brain abscess. Because my experience with this type of AVM means you bleed to death. I feel you need to treat it but I think the doctor needs to rethink that statement.

I wish you the best of luck with your treatment. Glad you found it early and didn't have the experience I had.

Kelly:

I just wanted to check on how you are feeling? I just found this site yesterday and joined so that I could tell you my story and tell you that you too will feel great soon!!

I just went through the EXACT same thing! On March 8th the bottom right third of my lung was removed (called a lobectomy) because my AVM was so large that the coils wouldn't have been a permanent fix. So rather than opt for more work in the future, I chose to have an open lung surgery and have the area of my lung removed. I had lived with this my whole life and didn't even know it since I didn't think I felt overly tired or anything. But to hear that my body was only 77% oxygenated due to the location and size of this AVM hogging up all of my oxygenated blood really scared me!

It has now been 7 weeks since my surgery and I have realized that my body had been sending little signs over the years. I woke up with a headache every morning which I attributed to needing caffeine, I was out of breath when walking which I thought was normal because I was walking/moving, I used eyedrops every morning when I woke up to get the red out which I thought was because my eyes didn't want to be awake...the list goes on and on. And all of these things and more are gone and I feel great! (other than a teensy bit of soreness from being cut open and muscles being cut, etc...)

I was really glad to read that you decided to get rid of it though...the doctor was right, complications can get worse in the future. I am 42 and the reason I initially went to my primary care doc was that I had a strange tingly sensation in the left side of my face, once in late Oct and once just before Christmas. While there the nurse noticed my bluish fingernails and did the oxygen test and found that I was hypoxic due to lack of oxygen. They were surprised I functioned on such low oxygen! After visiting the pulminary docs they said that the face tingling was most likely a TIA or mini-stroke! After blood tests they determined that my hemoglobin count was so high because my heart was pumping way too hard to make up for the lack of oxygen and all of this could have led to future aneurysms. So I am glad that you have had this fixed rather than ignore it so that complications don't arise!!

Anyway...just wanted to say hi and let you know that I went through the same thing about the same time you did. I am a little further down the road than you and I can tell you that if you aren't noticing any difference yet, it will come. Even if you never had any symptoms in the past, you will notice things being better than they were...which is a crazy concept to me, because I thought I felt fine!! :-)

Best~ Monica

Kelly Elizabeth said:

Hi everyone,

First of all, I want to say thank you so much for all of your replies, I am so thankful for each of them.

I also just wanted to give a little update since I asked this question...

Today I had my appointment with an interventional radiologist, and for the 1st time since the AVM was discovered I feel like I talked to a doctor who actually knew about pulmonary AVMs!

He confirmed to me 100% it is a AVM (I was scared it could have been a tumor or something and the last doctor i seen couldnt really tell me for sure if that was out of the question or not, he just said "well your young" which wasnt very comforting in thinking about weather or not I could have lung cancer!! So that instantly had me feeling much much better.

He said we have 2 choices, to not treat it and risk stroke, and/or brain abscess! or embo it. which he of course said to do!! he also told me that when anyone in the Massachusetts area is diagnosed with a PAVM they get sent to him (he is out of mas general) so that was reasuring to me because I couldnt find many doctors who have treated many of these right around me, I found some who treat them in the brain but finding a doc who treated them in the lung seemed harder. So I feel comfortable with him, plus it will be done at mass general hospital so God forbid if there are any complications I will be in a place with some great doctors. So i went and booked the operation for april 12th, a week from today!! I am very nervous, part of me just wants to not treat it out of fear which i know is not a smart choice, wish this is something I could just forget about!! but I am going to try my best to face this fear.

Also, another scary part for me... He said how a lot of times when an AVM is found in the lung it is related to the gentic disorder HHT... so he is referring me to someone to do a brain MRI (i am sooo scared I have one in my barin as well :( so depending on the result of everything my 3 small kids will be screened, which of course, is beyond scary :(

So thats where I am at. I just want to thank you all so much for your thoughts and support. I am keeping you all in my thoughts and prayers as well...

Oh and to answer the question I asked in this original post, just in case any of you are curious.. when the CT report said

"Serpiginous nodular density in the right lower lobe anteromedially
extending into the paraspinal area probably represents a small unusual
vascular malformation."

its not thAt it actually spread out of the lung.. they just worded it PARASPINAL to give an idea where IN the lung the AVM is.. which is also a relief, because I thought it might have been some kinda spinal AVM as well.