Newly Diagnosed

I am newly diagnosed with an AVM after having either a slight seizure or fainting spell last week. My AVM is small and in the right frontal lobe, which I have been told is not a bad area to have one,,I am hoping to see a neuro surgeon this week. It has not bled and I am not having severe headaches, but I am so dizzy I can hardly stand it. At this point I can't drive so that is worrying me as I see here that some folks wait a few weeks for treatment. I am on vacation this week and since I have had most of my testing completed while I was hospitalized, I am hoping that speeds up the process. I have two different Doc's lined up to call for appointments tomorrow one is chief of neurolgy anf the other was trained by that same doc, so I think whoever can see and treat me first will have to be my choice. I am on seizures meds right now and I just want this dizzyness to be over, can't eat and not sleeping well, because of the constant spinning.

Can anyone offer any help on controllng the spins?

Hi Deb and I wanted to welcome you to the group. I wish the best for you and hope you hear soon from the doctor. It is hard dealing with the side effects of the AVM. I am also on seiuzre medicine and can not drive. I wish I could help you with the spins. You might want to talk with your doctor on the seizure medication it could be the cause I have been on many different ones.

Deb: welcome from a fellow jersyan…I am so sorry…my avm started…passing out. If you do’ mind my asking who are your drs. You are right take whoever can see you first. I agree with Lee ann it could be htemeds you are on…did you mention it to them when making the appointment? If you are that uncomfortable go to the ER… where abouts in Jersey do you live? I am in northern not familiar with your twon. stay strong and I am here! xoxo Mare

Thanks for the welcomes…I am kind of in Central NJ, near the Tacony Palmyra Bridge. Tomorrow I will call Jefferson Hospital for an appontment with Dr. Roberwasserman or go to a hospital in Trenton and see a Dr. Vish (short version of a long name). The spins started prior to taking the meds, but I would think that they may have caused an increase in them.

Mare, what part of NJ are you in?

Hi, Welcome to the site, hope u get in to see the doc’s and discuss the course of treatment that is best for your AVM , take your time and listen at what they have to say. My AVM was just found in April and at the end of July I wil be having my first embo. Sometimes it takes a few weeks before they start treatment so just relax a little and keep us posted. You are not in this fight alone we are all here when u need us. Peace and Blessing to You

I too am new to the site, I was told that I have a AVM on June 29, 2010 and I too am unable to drive, it has been since May 5 that I was told no driving at all till they find out want is going on. I have seen 3 different doctors and I am currently waiting to see my 4th in Shreveport, La. This one thankfully specializes in AVM’s and that is wonderful cause now we will know what to except from treatment and so on. My prayers are with you and your family.

Hi Deb,

Your situation sounds quite a bit like mine. I was driving down the highway when the entire right side of my body went numb. The AVM was found on the MRI and I was told it was the cause of the numbness and was considered a seizure. I was put on anti seizure medication by my doctor. The medication made me feel awful and my doctor changed it for me 3 different times until we found one I could tolerate. Please go see the doctor and ask for a different kind / brand, etc. None of them are good but some are more tolerable than others.

I ended up back in the emergency room at a different hospital with symptoms that had gotten worse. Had an angiogram (I think that’s right) where they went into my groin and shot dye in my brain and took pictures. Doc said that best treatment would be the full surgery but I have a mechanical heart valve so that would cause numerous issues with stroke. The next best thing would be either gamma or cyber knife radiation. I have a consult scheduled for Thursday to discuss treatment. He says that he will do it quickly, problem is that this doc is out of my insurance network. Even though I really love this doc, he was so kind and patient, that I felt so comfortable with him.

In addition I am weening myself off of the seizure meds, and am now thinking about forgoing treatment. Has anyone else decided to forgoe treatment and just take the risk?