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AVM Survivors Network

Right pons DVA/AVM

#1

Hey all,
So 3 years ago, when I still live in Southwest VA, the left side of my face and fingertips on my left hand went partially numb on a Sunday afternoon. The next day nothing had changed, so I went to my local ER. After an initial MRI, followed by another one with contrast I was informed I had a very small lesion on the right pons of my midbrain (after a few days of laying in flux). They told me this was an incidental finding, and that there were no signs of bleeding and it was just a 'venous angioma'. I followed up with a neurosurgeon who said the same, and to just get on with my life as it was likely that nothing would ever happen. I've had plenty of weird little symptoms since, like stiffness in the muscles on my left side, tingling, tension headaches, and odd buzzy feelings in my head, but mostly I've been able to move past the anxiety and continue living. Since then I've moved to Brooklyn, and work in the city as a systems engineer for a tech startup. A few weeks back I was working onsite, at an office uptown and had to ride the elevator up and down from the 48th floor numerous times (mind you it's allergy season and I've had tons of pressure in my sinuses for weeks) and I found on each trip I was getting tons of pressure in my head, and the second day there I started getting a twitch in my left eye, and some pretty intense weird feelings in my head (I can only describe if for those of you that have indulged in marijuana, as that feeling when you sort of fade into being stoned.. only I wasn't using any drugs). I decided it was time I revisited the issue to make sure nothing had changed, and made an appointment with a neurologist at the NYU Langone Medical Center. After an initial screening she found I had a few issues that were alarming. I've had decreased sensitivity in touch, just ever so subtle ever since the episode I had 3 years ago, and my left knee is hyper reflexive. She said the twitching was from stress, and it's since gone away mostly. She ordered an MRI of the head and spine, and an MRA of the head to rule out MS (no contrast in either), and when she followed up with me she said she had good news, that the only thing that showed up was the one lesion, but to follow up with a neurosurgeon. A few days later I did just that, and he was Dr. Grim if there ever was one. He said he couldn't tell if it was just a DVA (which is what it says on the MRI report) or an AVM and wanted to do an angiogram, and how I'd be a good candidate for Gamma Knife most likely. Still he said it appears I've never had a bleed, and that it's very small. Does this make sense to anyone? I feel like a second opinion is in order prior to an angiogram, as he warned me of the risk of stroke, but if it is an AVM I definitely want to get it diagnosed and zap before a bleed happens. My anxiety is through the roof, messing up my personal life and work life, and I'm having all kinds of crazy feelings/symptoms and can't distinguish whats real and whats manifested by the anxiety. If it's not an AVM and just a DVA, I'll deal with the symptoms and let sleeping dogs lie. So I guess in summary, do I risk an angiogram, or try to find a doctor that can give me a better diagnosis via MRI/MRA?

-David

#2

I am not sure if this is going to help you decide but here is my story anyway. I had an avm on my right anterior pons. Have known for many years and it was asymmptomatic.last year when I went in to see the neurosurgeon on a routine visit(have had other brain issues before including brain surgery)he said that the MRI showed that my avm was about to pop and ihadtohavegamma knifesurgeryasap. I did within two weeks of seeing him and during the procedure the do an angiogram to map out the brain before gamma knife.asmy luck would have it I had a smallthalamic stroke during the angio.the symptoms were minor- handwriting was messed up, some numbness on my lip etc but it all went away in three weeks.the gamma knife takes several years to work and the earliestresultscan be seen in 16 months or so. I am one year past my gamma knife.the only definitive way to tell if the avm is gone is the angiogram and I have not decided if I will do it but we will see.



In the meanwhile I Leana normal life, drive go toworketc.mind you this after having a massive hemmoraghic stroke from a cavernomableed from the pons in 2007followed by brain surgery in 2008 to remove the cavernoma. It was a long recovery 6 yrs but I continued working, they kept my job for me. I did not work for 8 months.the avm was not symptommatic all that time and only started acting up after my recovery.yes bad luck but what can you say?

I don’t have my readers on so may have made some typos. Ugh, sorry. Off to work. I say if you have symptoms do the angio.i did not have symptoms but my MRI showed a swelling and that it was ready to pop which is why they did the gamma knife surgery in 2 weeks.

#3

It seems to me that this possibly dangerous condition is really affecting your quality of life. I have had so many angiograms that I've lost count. I've never had an issue with any side affects of the angios. So if it were me, I would go ahead with the angiogram so you would know for sure. Fear of the unknown can be very powerful. Arm yourself with information. If it would make you feel better, then have another opinion (or 2) before you make the decision. Let us know how things go for you. ♥

#4

I would go for a second opinion with a doctor that has experience with both DAV and AVM. The Barrow does second opinion’s for $100.00. https://www.thebarrow.org/Neurological_Services/2nd_Opinion_Program/index.htm
Johns Hopkins is also a good place. Maybe some on here can suggest where they went. Many hugs to you.

#5

I would try to get a second opinion with a neurosurgeon that knows their AVM/DVA stuff.

I'm not sure of the exact rate of serious complications resulting from angiograms, but it isn't very high. Personally, I have had 2 angiograms without any real problems. For my first angiogram, I had a lot of anxiety about it, so I requested a lot of sedation. The procedure was a snap, but I paid the price for all the sedation and felt pretty crappy from it for awhile. Otherwise, my leg was just sore for about 2 weeks. My doctor decided not to use a closure device, so I had to lay flat and not move much for 5 or 6 hours, which is much more difficult than it sounds, especially if you feel sick and need to use the bathroom. My AVM was an incidental finding and unruptured. I considered radiation, but ultimately decided to have it surgically removed. My second angiogram was a few days after my craniotomy, so that sucked for other reasons.

If you don't have one already, get yourself a decent primary care physician (easier said than done, I know) and a prescription for Ativan or Xanax if you feel like it will help. Best of luck getting to the bottom of things.

#6

A second opinion is always a good idea. Make sure the doctor is expreienced in treating AVM/DVA. Most likely you're going to have to have the angiogram. It's the best way for your doctors to see exactly which vessels are affected. Good luck.

#7

Just wanted to share my boyfriend Joe's story. He had a traumatic brain injury when he was 23 from a piece of metal that fell off a rig and hit him on the front left side. He had a surgery called a craniotomy to fix the cracked skull. He is now 53 and suffered a mild stroke that coincidentally was on the same side. After an MRI they saw the AVM. Not sure why they didn't see it back in the 80s when he had the accident maybe because it was in the back left side. So they did an angiogram to see what it was all about. There was no bleed with the stroke/AVM which was good for him. He only lost some speech and ability to say words at certain times. Post angiogram they said they could shrink the AVM with the radiation treatment using the cyberknife. He had all that done and is doing well after about 2 months post cyberknife. Point is he was living his life (reckless at times lol) not knowing he ever had the AVM. Guess it was a good thing the mini stroke gave us the heads up. Hopefully the radiation treatment will shrink this thing and cause no more problems. Now he is on bp meds and he still smokes that is the next thing we need to control. I hope his story helps you get thru your journey. IF you seek any other opinions we went to Dr Barbara Albani in Christiana Hospital Delaware. She is their leading authority on AVMs and we love her! Good luck to you keep us posted!

#8

I have an AVM on the left of the pons, and discovered my AVM when it ruptured last year. I agree with everyone else- go ahead and get a second opinion, and make sure it is someone with a lot of experience with AVM's.

As far as my experience with the imaging, the ER was able to diagnose my AVM with just an MRA when my brain was bleeding. I'm not sure how that translates to an AVM that hasn't bled before. I have had 4 angiograms, 2 of them right after my bleed when my AVM was most fragile and I haven't had any major complications. I did have a hematoma on my leg after one, but that was really minor and just led to some serious bruises. I totally agree with you though- if it is an AVM you want to know so you can decide how to treat it, and if it's not, you will have much better peace of mind! Good luck!

#9

Wow. You have been through a lot, and it's understandable that you're having so many emotions and anxiety surrounding your situation. We found my daughter's AVM (on her brainstem) when she was 17. They did an MRI at first and later did an angiogram to get a better picture of it and what we were dealing with. The day that she had Gamma Knife they did another angiogram, MRI and CT scan. They used all of these images together to pin point where the radiation would be aimed. It's been a year and a half and MRI's show that it has shrunk to less than half of it's initial size. I agree with everyone else that you should get a second opinion and also that you probably need the angiogram to really get details. Saying a prayer for you right now - for the perfect doctors, specialists, and treatment that will bring you back to perfect health. Best of luck with all of it! :)

#10

Thanks for all the thoughtful replies! This was very helpful. I've decided to go through with the angiogram, it will be performed by Dr. Kim Nelson at NYU Langone. Afterwards I plan on getting a second opinion at Hopkins, regardless of the findings. Here's to hoping it's just a DVA!