Hello AVM Survivors. I am so glad you have this site. I just got diagnosed with a small AVM located deep in the right temporal region of my brain a few days ago. The Neurosurgeon here in Jackson, MS has seen 6 cases, and he told me that no one has symptoms. He told me that my AVM is of no significance, and he suggests no treatment. I had been admitted to the hospital for right sided facial numbness, eyelid droop (mostly closed), temple pain, arm and leg numbness, swooshing sound in back of head, secondary hypertension, weird sezuires, and left eye strabismus. Long story short - I need help. My Neurologist tried to get me help, but when the surgeon blew me off, he said go home and we will see in 4 weeks. He gave me a cocktail of medication to help with the symptoms. It has been 3 days since I came home from the hopsital and I am going down hill again. The Neurontin keeps me from going into the full body seizure activity, but I am still shaking. My temples hurt off and on. My head gets the swooshy thing more and more. My facial numbness is almost constant. Now my tongue is tingling along with my neck.
I need a good Neurosurgeon, a good AVM team to look at my case soon. Does anyone have any suggestions? (BTW - Surgeon said angiogram not needed, but could be ordered as an elective on my part)
I can’t suggest a medical team for you, but I would encourage a 2nd opinion. Your symptoms sound like much more than “come back in 4 weeks…” Especially if these symptoms suddenly appeared.
If my neurosurgeon only had 6 AVM patients, I would consider him/her NOT the least bit qualified to offer me an opinion. If he’s treated hundreds, maybe. If he’s treated thousands, you bet I’ll listen to him.
And based on the symptoms you describe, I would not think an angiogram would be “elective”.
Hope this helps.
Ron, KS
Thanks for the reply. My family and I will work on getting that second opinion as soon as possible.
Ron, KS said:
Welcome,
I can’t suggest a medical team for you, but I would encourage a 2nd opinion. Your symptoms sound like much more than “come back in 4 weeks…” Especially if these symptoms suddenly appeared.
If my neurosurgeon only had 6 AVM patients, I would consider him/her NOT the least bit qualified to offer me an opinion. If he’s treated hundreds, maybe. If he’s treated thousands, you bet I’ll listen to him.
And based on the symptoms you describe, I would not think an angiogram would be “elective”. Hope this helps. Ron, KS
DItto what Ron says!!! That is so crazy that nothing else is being done for you. It makes me so sick when I read about doctors who have this attitude (out of ignorance of the condition!) and do not at least refer you for further opinions and for sure you need an angiogram!!
Terryl- you DO need to do some homework, find a neurosurgeon who has experience with AVM’s and when you do this, and are speaking with someone who knows what they are talking about, you will feel SO much different and more in control. You must be so scared with all these symptoms and for sure your “brain” is trying to tell you something!
I hope someone on here can recommend a good doctor who is close to you but if you have to travel to find one, do it.
Let us know how your search goes.
Wow. I’m shocked to hear they said do nothing. Come to Nashville…not too far from you I don’t think. My team of Docs have been great. I see Dr. Scott Standard and his team member Dr. Abram who specializes in radiosurgery. I also see the Radiologist who is Dr. Rosenblatt. They are all part of St. Thomas hospital here in Nashville, TN. I highly suggest seeking help from another source. I had two embolizations and then radiosurgery. I was told that surgery was too risky but at least there was another option! Best wishes!!!
Keep us posted.
I was not diagnosed until I had a stroke from a bleed.
I went to ER with a headache before, but I was not diagnosed, I was told I pulled a muscle. Now that I know that I have an avm, I think it was more than a muscle strain in my neck.
At least you are diagnosed, I would get another opinion too.
Get out of Jackson. I have never heard of any AVM described as not significant. Mine was only 2-3cm, think about that - as big as your thumbnail - and it caused all kinds of problems when it bled. New Orleans is close by, someone else mentioned Nashville and there’s also Birmingham. A good neurologist will want an angiogram, an MRI/A and potentially a CT scan.
I also get to where my temples hurt. And the swooshing sounds I have on just about a daily basis. My avm is in the lower part of the left temporal lobe before treatment it was almost 5cm. I have had treatments. So even if you get treatments and it is still there you will still have some of the same problems. Sorry about that but its better to know. The swooshing sound creeps me out but. Nothing I can do its just there. I just can’t wait for this thing to be gone. In dec it will be 3 years of this nightmare for my family and I. I wish you the best of luck!!! This avm thing is all just a waiting game and it sucks for all of us. That’s why this site is so amazing to us all on here, who just need encouragement and sound advice. That sometimes are dr’s just can’t do! Take care andrea
ask lots of questions about treatment options as they are each so different. The meds may be causing you several side effects. I hate those seizure meds. My daughter(now 18) is on Lamictal. I’ve heard of the tingling with Neurontin. I don’t know how the dr.s choose one over another, but get lots of opinions. It’s YOUR brain!
Hi Terryl…you most definetely need to get another opinion and seek out someone who specializes in this area. I am so sorry that you are suffering with such nasty symptoms…you certainly need help right away. Can you perhaps contact the specialist that Rachel mentioned? I hope you feel better soon - use this website to help. This is a wonderful community of people that have all been touched by this condition and are eager to share their experiences and their knowledge. Hope to hear from you soon - /pat
Good evening everyone. Thanks so much for all of your support. My facial numbness and tingling actually began before I was put on any medication. Last night I was searching for good AVM treatment centers and ran across a Doctor at Duke. I happened upon his email address and took the chance of emailing him directly last night about my problem. I asked him for help. Do you know that the Neurosurgeon emailed me back within 10 minutes. I am going to Duke University Hospital on Monday of next week. God is so good! This morning his patient coordinator contacted me before the sun came up to get the ball rolling on the appt, paperwork, etc. Please pray first, I make it (because every minute seems like an eternity), pray for my family, then pray for the trip (we are driving - 13 hours), also pray for the team of Doctors that will be seeing me when I arrive, and pray that I will be prepared for what ever they conclude for treatment afterwards. I will be a survivor!
That is great and you will be in my prayers!! I agree with Brian that a good Neuro wouldn’t just let you walk away and do absolutely nothing! My docs were so on the ball and immediately scheduling MRI’s , arteriograms, etc… They knew due to location and size that surgery was not the best option but that treatment could help me. Ignoring it was never an option in their mind. Keep us posted!
Get as many opinions as you can and be sure the surgeon that will operate you has a lot os succesful cases in his cv, it means complete resection of avms.
so glad to hear you found a doctor that has taken you under his wing. That’s a huge step and my prayers are with you and his team. The way my daughter’s Dr put it was that they believe an AVM is present from birth and shows itself in later years when it becomes irritated in some fashion. That’s when it presents itself as a bleed or seizure or worse. So when it does that it is time to take action because it won’t get better and typically causes more unpleasant symptoms down the road. Glad for you that it sounds like you’re in good hands. prayers…
Erica said:
Get as many opinions as you can and be sure the surgeon that will operate you has a lot os succesful cases in his cv, it means complete resection of avms.