AVM Survivors Network

So ready to be done with this!

I know that I am very fortunate with the AVM that I have & the fact that it was found before any real damage was done, I am just getting so tired of all of the medical issues (not just the AVM) I have been having to deal with. Since 2006 I have been in the hospital every year except for three of those years.

This year alone I have been hospitalized in July for emergency gallbladder surgery, I am not only seeing a chiropractor monthly but also going to PT three times a week for my sciatica.

As far as my AVM goes, in May I had an MRI, in September I had an angiogram, in October a CT Scan & now this next Monday (November 16) I will be having another angiogram, though this one will be a little different as I will have to stay the night in the hospital, everything else has always been outpatient. This is what they will be doing: Recommend attempting embolization of residual, this is in the angio suite, catheter inserted in groin, and embolize abnormal vessel—in other words block the abnormal connection.

On top of all of that my regular doctor has me seeing a kidney specialist, a Nephrologist. The last several times that I have had labs done my creatinine level has been high, the Nephrologist says that I have Chronic Kidney Disease. In 2007 I had kidney cancer & one of my kidneys had to be removed. He said that every time I am given a dye for a CT Scan or an angiogram that it injures my kidney. I will now be seeing him every couple of months.

Then all of this medical stuff is affecting my job, my boss doesn't understand all that I am dealing with, I try to explain it to her, but she doesn't want to hear it. So for every-ones best interest I am currently looking for a new job. Though the boss doesn't know that just yet.

I really do now how fortunate I am to have the wonderful family & friends that I do have, they have gone above & beyond. I love & appreciate them all a great deal. So as much as it may sound like I am complaining I am actually not, I just need to vent from time to time. Thanks for listening.

Hi Lori

I hear you.I know we are lucky my partners AVM hasn't ruptured but he now has had to give up work because of tiredness lose of speech headaches and continuous pressure on his head.Like you we find people don't really understand and it is great for us to have a forum to vent.We hope everyday the appointment for the surgery to arrive.Please take care Lori and thanks for listening to me


I too luckily have not had a rupture. But, I only have my AVM to worry about. You have a lot of different medical issues. I would have gone completely nuts by now! I don't think it is complaining, it is healthy venting. Never let stuff build up. This is the place to go when you need to do that. My manager is pretty good with working with me as far as appointments. If it is for just an MRI, I can plan that around the work schedule. But, if it is an actual procedure, ect., he just says they will get by. I just need to take care of me. He does remind me frequently to make sure my intermittent FMLA is up to date. That makes sure my job is protected in case something comes up, e.g., seizure at work where I have to go home early. You can only miss so much work in a time frame without it counting against you. The company itself would not "work with me" without that.