Glad I stayed!

Over the course of the last few days I had been experiencing some issues with my esophagus; difficulty swallowing specifically, but no other symptoms whatsoever. The pain had become so intense that after three days of not being able to swallow, I sought medical attention in the urgent care center of my hospital.

After waiting a few hours, my doctor collected blood specimens and took an x-ray of my throat. When the results of all the tests came back, she said they were completely normal and the x-ray only showed slight narrowing of my esophagus. However, she said that because she felt it may have been something more, she recommended me to have a CAT scan of the affected area.

At about 7:30 pm, I found myself driving to the emergency room of Kaiser Permanente in Washington DC. As i drove myself to the hospital, I couldn't shake the feeling that something bigger was a problem; incidentally, I was not worried about something wrong with my throat, but only the vague feeling of "wrongness" loomed over my concerns about my health. I phoned my best friend, and told him where I was going and asked him to attend with me, as hospitals scare me quite a bit. When I entered the emergency room, I was immediately escorted back to a room. The hospital staff was very accomodating and found my friend who arrived minutes after I did and escorted him back to my room.

As we waited, I had an IV drawn to rehydrate-- because for the last few days I haven't been eating or drinking much because of the pain while swallowing. More blood was drawn to test the levels in my kidney in order to assess whether or not my body would accept a contrast for the CAT Scan. And I grew ever more impatient with the HMO process (the wait times, the lack of communication between my doctor and the hospital, not to mention the weekend hours when the hospital was understaffed.)

I came dangerously close to walking out, I even grew so impatient that I told my nurse that I wanted to leave, and I would worry about this later.

They pushed me to the front of the line for the CAT scan, it was over in mere minutes.

And then I waited some more.

Once again, I grew impatient and told my nurse that I wanted to leave and the results from the CAT Scan should be forwarded to my primary doctor; but the nurse insisted I stay and await the results, after all I had already spent six hours there. What I thought was going to be a routine appointment, turned out to be very different.

My nurse was especially helpful and pushed my doctor to meet with me; as I put on my coat, the doctor arrived and said that everything was normal with my throat and the CAT scan revealed nothing out of the ordinary. However, while he was viewing the CAT scan, he noticed an AVM; something that I'd never even heard of. He explained his knowledge of what it was and the potential dangers but made no suggestion to see a neurologist.

As of today, I've decided to get a consultation and see what the risks actually are from a qualified individual.

Oddly enough, as soon as the CAT Scan was completed, my pain in my throat subsided COMPLETELY. In retrospect, I really believe that some higher power wanted me to know about my AVM and this pain in my throat was manifested in order to get a CAT Scan. One that incidentally revealed this condition to me.

The AVM from what he told me lies over the part of my brain that controls speech, balance and vision.


So over the course of an indeterminate amount of time, I'll be taking steps to assess treatment options and speak with vascular neurologists about this.

A little about me:

23 years old, male, very physically fit, no history of major surgeries, no allergies, by all means a healthy person, only a history of migraines from time to time that coincidentally tend to radiate from the general location of the AVM. I'm here looking for insights about treatment, surgeries, as well as doctors.

Welcome Michael,

Glad you found out about your AVM. Now to figure out what to do:

1) Nothing

2) Embolizations

3) Some form of radiation

4) Surgery

5) Some combination of 2, 3, and/or 4.

Pros and Cons for each solution. Generally the above are ranted in the least to most risky treatments, but also in the slowest to cure time to the fastest to cure time. Decisions, decisions.

Recommend you find the best team in your area for dealing with AVMs, see what they say. Then maybe send your scans to another center for that team to review. Scans are usually on a DVD now, so not much cost to get a set for yourself/another Dr.

I wish you well.

Ron, KS

Hi Michael,

While, I cant offer you much real insight as I just found out about my AVM of my lung on March 9, 2011. I just had to comment to let you know that you are not alone, and your story is nearly identical to mine, except mine is in my lung rather than brain. I mean your whole hospital story... I went to the ER about pain on the LEFT side of my chest and they did a CAT scan and just happened to find the AVM on the RIGHT side... I mean I could have wrote this story ;)

I am a 28 year old female... Your are not alone!! Over the last few days I've read a lot of stories on this site (which I am sure you may have also) and sounds like you need to find a doctor with AVM experience (I am currently looking for that right now also) seems like that can be kind of challenging. But looks like a lot of people get successfully treated. Stay strong, I know its scary.

Hi Michael. AVMs occur in only about 1% of the population. Most ER doctors have no clue about AVMs. My friend Patti Gilstrap composed a list of questions to ask a neurologist/neurosurgeon...

One of the questions I would consider the most important is, how many AVM patients has he/she treated?

Outcomes of surgeries?

Does he/she anticipate any deficits? If so, will there be therapy available in the hospital?

Does he/she have other AVM patients willing to share their experience(s) - someone you can connect with?

Keep asking away - this is a GREAT website! :)

If possible get a 2nd opinion and 3rd opinion.

Also...make certain another person goes with you to the appointment. The other person might hear something that you might miss. Plus take notes.

I hope this info helps!

Thank you for this, Barbara. So far in my life, I have not experienced any adverse reactions from the AVM aside from the bad headaches, which in retrospect I believe could have been due to bleeding.

I will keep this in mind, and also expand on this list of questions during a consultation with a neurologist as I have so many more :). Thanks for the help.

I plan over the course of the next year(s) to meet with different specialist in order to find out the extent of my AVM.

Hi Michael, welcome to the site. I wish you the very best in finding a good, qualified doctor. This site is full of wonderful, helpful people. We’re all here to give support in any way we can. Good luck and let us know how you’re doing.

Absolutely, I have my first consult with a surgeon on monday, I was informed that my AVM was “of considerable size”, so we’ll see exactly what that means!

Michael, you sound a lot like me. My AVM was found after having a seizure. That was the only symptom that I ever exhibited. My AVM was too big to do embolization so we decided to have the surgery, have the AVM removed and not have to ever worry about it again. I was also 23 when mine was found and in great physical shape. I had surgery at UNC Medical Center in Chapel Hill, NC. My Neurosurgeon was Dr. Germanwala. He did his residency at Johns Hopkins and I felt very confident having him as my surgeon.

I had the AVM removed on June 15, 2009. I stayed in the hospital for 5 days before I was released to go home. I had some headaches for a while, but by 6 weeks later I was almost completely back to normal. I was back in shape by about mid August and back to playing sports by the end of August.

Having the surgery was the best decision I could have made. I know that every responds differently but I responded so well that I never have to go back to see my neurologist again! I can only attribute this to the grace of God in my life, but I also had a great surgical team that did a wonderful job.

It has been more than a year and a half and other than the scar on my head from ear to ear you would never know that I ever had an AVM or surgery! I hope this helps in some way and if you have any questions feel free to ask!

Thanks for your reply. At this point, I haven’t had any symptoms because of the AVM, I can only think in retrospect that some of my migraines in the past may have been caused by it. But by far, they were never regular and only occurred 1-2 times a year for the last few years.

I am most fearful at this point of invasive craniotomy, the scar, the recovery, the risks etc. I am hopeful that the extent of it is not bad as well as the size and location warrants less invasive methods of treatment. I will know more on Monday, 3/22 when I meet for a consult with a surgeon.

I had the same thought initially but once i weighed my options I decided at my age it was better just to have it removed and reduce the risk of a bleed to 0%. If it is in a location where it can be removed I would strongly recommend having it taken out. I sleep amazing at night knowing that I no longer have a risk of a bleed.

I am leaning more towards that and if that is an option and the doctors feel best about that then I guess I will have to :)

I guess I am more apprehensive about the experience afterward, because from what I've read throughout these forums is the possibility for difficulties post surgery, and because I have no symptoms before, I am afraid that I will lose any given faculty.