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Just learned I have avm


#1

Hi I am Nancy… I am 55 live in Melbourne Florida. I have had nonstop headaches since February. Also nonstop ringing in my right ear. I have been treated for everything! Finally after demanding a spinal tap to see if it was pseudotumor the neurologist looked closely at my mri and saw the AVM! He called me after office hours to let me know and now I am set up for an mra test on Monday. I am not sure what to expect or what to plan for and I am really scared. Any advice would be helpful.


#2

Nancy

This is a difficult time for you because discovering one of these things is quite alarming but well done for finding us and be assured, we’ve all been through some of what you’re going through and you will calm down about it.

We are here for you to talk to, to ask questions, to share experience with and help you through.

There are lots of people here who’ve been through the same and we can tell you how some of it works. Some of the treatment options I consider scary but some of them I reckon are easy peasy so don’t go thinking the worst because you might worry yourself unnecessarily.

Ask anything you want. It’s what we are here for.

Lots of love,

Richard


#3

@Karmagirlnw Nancy so glad you pushed the drs! So glad you are getting an MRA- this is a supportive group and I am glad you found it! You will probably find out more here than by your drs. let us know what type of AVM you have and what type of treatment they are suggesting. It is very scary- Mine was caused by a rare stroke by 5 blood clots and the pressure in my head blew out a major vein and the body tried fixing it by growing the avm. Some people are born with them. Some people after trauma. Were you in a car accident or anything? Feel free to freak out here- its safe and supportive.
hugs
Angela


#4

Thank you so much! I will let you know after my test.


#5

Hi Nancy, its great you’re here with us. Certainly scary ties, the unknown is what I find to be the most difficult to deal with. Pushing the Drs was certainly smart and finding it with those symptoms vs. a bleed is also really good. You’ll find a lot of experience here and great folks, you’ll often find that people who have these or are care givers/friends/relatives/partners have a pretty good understanding. Take Care, John.


#6

Please see an Interventional Neuroradiologist with a major hospital affiliation. Neurologists are not trained to handle AVMs. Any competent neurologist should immediately admit that you need to see a specialist in AVMs. Good luck !


#7

Thank you all again. Yes I am very nervous. Having hard time now sleeping trying to work… Just got my thoughts on this thing I really know no nothing yet about. My head hurts I am dope up with meds and trying to stay calm. Yes I am going to look into seeing if my insurance will cover the mayo clinic and if they will accept me. It’s in Jacksonville. Not sure if it will need it tho. So confusing.


#8

I was just looking at the list of recommended drs Dr. Roberto Heros at Jackson Memorial Hospital in Miami, FL was my Son’s Neurosurgeon. Amazing! And he is listed in the top 1% (blue star) in the nation for his specialty in U.S. News & World Rpt. Highly recommend! this was from 2013


#9

Nancy I’m new to this site also, My AVM was in 2002 and I wish I had access to this forum.My AVM burst it was on my occipital nerve. I had Headaches and Vision problems. I remember everything. So my visit to the Nurosurgeon was tuff, I was prepared for the worst. And sleep, well lets just say my mind raced all night. He told me what it was and said that they could not do surgery because of the location. I had many more tests. The best advice a doctor gave me was go live your life. Now 16yrs later and going strong with out surgery. I value every moment with everyone. Don’t let this scare you, take a deep breath and maybe just maybe everything will be ok.


#10

That is a good story I have not heard. Did your headache ever go away? Thank you so much.


#11

Hi Nancy,
Welcome to the group. I had my AVM found in 2013. The doctor said I’d had it since birth and it had grown quite large. I was having dizzy spells and weird headaches. My doctor did an MRI just to be on the safe side and found I had a large AVM in the right frontal lobe. I went to the Tallahassee, FL hospital for 2 embolization procedures. There is a doctor there that is an expert on AVMs. After the last embolization, I went to Dothan, AL for surgery to have the AVM removed. All went well. I won’t kid you, there is a long recovery period when you have to take it easy. My suggestion would be to take it one day at a time. Don’t look to far ahead. You don’t know what the future is, so don’t try to guess. I’m sure I speak for everyone on this website when I say you are in our prayers and that we are all here to cheer you on. Please keep us posted on your progress. If you would like the doctor’s name in Tallahassee, just let me know and I will get that to you. Good luck and good cheer. I am 5 years out from my surgery and am doing very well. Any questions, I am here will and able to tell you anything about my experience.


#12

Yes my headaches finally went away. As the blood leaves your brain things get better.The anxiety of thinking everything has to do with your AVM was tuff. I then decided to control my AVM and not let it control me. Live your life was the greatest gift of words given to me.


#13

Hi Nancy! Getting diagnosed and treated for AVM’s is like a crazy rollercoaster ride! My 3 AVM’s were all found in the last 11 months. I’ve had 4 embolizations-1 successful. (AVM’s were not safely accessible),3 CT scans, 6 brain angiograms and most recently a craniotomy open brain surgery. All at Mayo Clinic in Rochester, Mn. After 3 weeks post op I’m feeling pretty darn good! No more headaches, dizziness, nausea or head pressure. I go back to Mayo for another brain angiogram in 3 weeks to see how everything is looking. I believe I will probably need some gamma knife radiation as well. Hang in there-I know how scary it is! Google YouTube Mayo Clinic singing doctors…Dr Elvis’ song “Alright” got me thru this!!! Hope it helps you as well!


#14

Yes my Headache did go away. From what I understand it takes a long time for blood to leave your brain. I had 8 months of issues, I tried an anxiety med but that made things worse. I had trouble remembering names and getting words to finally come out. But I kept getting up and going out, a little more everyday. After 8 Months things started to get back to normal. Keep a positive attitude and Keep going.