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AVM Survivors Network

Been searching for answers for months

#1

I would say it’s been about 8 months now I have been to multiple doctors and multiple ct scans all to no avail. I have a noticeable lump right about my left clavicle with pain that radiates into my neck, back and ear region. On Monday night I decided to go back to hospital that I had the original scans done and tell them that I am suffering everyday and that I really think they are missing something. Two doctors looked over my old scans and then told me there was indeed something there on the scans and that he thought it looked like a AVM , he said he would have the radiologist look back over the scans and he would call me back today. I am waiting patiently by my phone but have a million things running through my head. I guess the biggest one being is a AVM on the neck dangerous? If I bleed as I have been reading can happen Can that cause an aneurism? What are my dangers and is this something I can live with or treat? The doctor monday said what ever I decided to do , don’t let someone cut on it or try to remove it because it is very large and goes all the way down into my breast. Any insight into AVM’s in the neck are greatly appreciated. Up until Monday I had never heard of this before in my life. In my mind I was bracing for the cancer diagnosis. Not sure if this is any better.

#2

Hey Grace,
I can assure you having “…a million things running through my head…” is very normal. You have been given partial information and to be honest have to process it all when you don’t know exactly what is going on, that’s stressful for anybody. All of those “what if’s” that run through your head can drive you crazy. As hard as it can be and as easy as I may make it sound, Please don’t go there, well, not yet. Wait until you get more information, then you can make a plan on what to do from here. Trying to make a plan with partial information is a waste of you time an energy.
I can assure you there are treatment options for an AVM and IMO it is much better than a cancer diagnosis. Cancer can spread throughout the body an AVM cannot. In very layman, simple terms an AVM is a tangle of blood vessels, where a cancer is abnormal cell growth and vastly different.
Can AVM’s be dangerous? Yes, but there can be many variables such as size, exact location, which vessels are involved and all of these can impact treatment options.
Your other questions are all very valid but we are not dr’s and all of those questions need to be put to a dr who can determine treatment options.
I hope it helps.

Merl from the Moderator Support Team

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#3

Hey gracegirl,
Take a deep breath and try to stay calm! I know this is easier said than done right now as you are trying to absorb a lot of information at once. The majority of people with AVMs have had them since birth and lived with them all their lives (without realizing). Yes it is serious (if it ruptures), but it isn’t slowly eating away at your body like cancer. My AVM did not show up on the CT scans, there was just a little squiggle, which they thought was nothing. I only received an AVM diagnosis after an MRI scan, however mine was in the brain. You might want to ask your doctors if an MRI scan would be useful to clarify your diagnosis. Try and distract yourself in the meantime. Wishing you all the best.

#4

Hi Grace,

AVM is a scary sounding diagnosis, particularly as its almost impossible to get consistent and coherent info. Mine was in the spine and for various reasons surgery was the only option but that’s not the only treatment and your doctor will discuss the best options with you.

Keep positive, it hasn’t ruptured and they’re on top of it.

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#5

Hi grace,
My son who is 11 has been diagnosed with an avm in the same location about a week ago. We have an appointment with a neurosurgeon tomorrow. We also are quite uneducated about AVMs and looking for all the info we can get. I have read everything thing I can for the last week but there doesn’t seem to be a lot of concrete info out there. We are from Maine and are probably headed for Boston or NY in the near future as that seems to be where the specialist seem to be. I have so many questions like can my kid go play like normal? Can he run around and get his blood pressure up or is that bad? What about him falling/trama? These are all questions that I’m sure you have too. I’ll try to get back to you after his appointment. Good luck!!

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#6

… just want to loop @TJ127 in…

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#7

@DickD - thanks for looping me in. I am on my way to visit the in-laws in Florida - after 13 1/2 hours on the road we are slightly more than a well hit home run at SunTrust park in Atlanta. 10 more hours tomorrow. Time is minimal right now and will be until next weekend.

A couple of points you need to know:
I was first diagnosed with an AVM in my left neck/clavicle area in 8th grade.
I have lived with it for 41 years. Yes, that makes me 54.
It has never bled.
I have had significant procedures (surgery, embolizations etc ) in 1978, 1986, 2009 and 2018.
You will get used to playing the risk/reward puzzle and decide whether the symptoms are worse or the risk is worse.
Prior to 2018, I was able to move on with a relatively normal life.
My Dad had cancer 5 times and the last one called him home. I will take this compared to cancer any day.

2018’s procedure was to minimize a major risk of a brain bleed. It was successful - so I can go to Florida with my family - but it left me with some nasty side effects.

Advice for tonight:
Request a second opinion from Dr Giuseppe Lanzino at Mayo Clinic. It doesn’t have to involve a trip there - but a sharing of records. Tell him I sent you.

Stay away from activities that would significantly raise your blood pressure - weight lifting, snow shoveling, heavy lifting. Walk, don’t run. I’m convinced that is one of the reasons I haven’t had more problems.

Let me know if you have more questions, I will have very limited access until April 6.

Or message me privately.

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#8

@Mark5 and @gracegirl - we are now a gang of three. In 41 years, you two are the first that I have met where it was the same place as mine started.

Welcome to an amazing group of warriors. Let’s just say they are amazing and they fight - for themselves , for their family and for all of us. It, no they inspire me.

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