Hello Everyone I was just curious to know how often people see their surgeons or neurologists. I have a very large stage 4 AVM right frontal/parietal lobe. I had a bleed May 2010, embolization/craniotomy July 2010 (without success) and gamma knife August 2010. I traveled to see my surgeon but they recommend only yearly follow ups. I have only seen them once 6 months following procedures and they say they will contact me this yar to set something up. Does this seem right? I kind of feel lost in the bundle and you always wonder.
I didn't have any bleeds. I had GK in June 2011, and the neurosurgeon wanted to see me two weeks later because he found an aneursym. We then scheduled a crani to clip the aneurysm in July & then a followup to remove stitches 2 weeks after that. I saw him again in Dec. 2011 for GK #2, and then last week for GK #3. I'll see him again next June for a followup MRI & in 2 years for an angiogram.
I did have a change in my migraines in September & he sent me for an MRI. It actually showed remodeling, not any bleeding, so I didn't have to go into his office. He gave us the news over the phone & referred me to a neurologist for managing the migraines.
Once a year sounds right. We've made extra appointments too, when something major has happened (like when AVM-related symptoms change dramatically, or getting in to see a new neurosurgeon right away when we moved to a new state so we have that contact in case of emergency).
My husband was cleared for no visits after his surgery over 20 years ago, and that meant he wasn't among the first to know of the newer possibilities for treatment. So stick with your yearly visits even if they become very dull!
Waiting for a neuro office to call has never worked out well for us; I think you should feel free to call them with a date in mind and ask for an appointment.
Thanks for responding. The waiting for me seems to be the hardest part with the gamma knife. I was told that there probably would be few changes until between the 2nd and 3rd year. Do you mind me asking why you had 3 seperate treatments of gamma knife as it sounds like you are getting some good results with remodeling already!
Thanks for the advice. I think I may call to set something up instead of waiting
I didnt have a bleed, had craniotomy on the 6 october 2011 - had an appointment with my surgeon on the 17 November 2011 and now my first MRA after surgery last wednesday - will see my Surgeon to talk about the results tomorrow.
, So there were exactly 8 months in between....
KS--I had to have 3 GK treatments in order to treat the whole AVM. Different parts were targeted each time.
Great question - I'm interested in seeing your replies.
I was going to various doctors since I had a few things going on and I was working on a few things, but now I'm down to seeing my neuro. 1X/year.
I hadn't seen anyone after I had my crani in May of last year. I was released from rehab a month after surgery (I had a major bleed followed by 2 embos and a crani). I finally went to a neurologist only after I was curious about how my head was doing since I hadn't seen a doctor. They just kind of was like, your avm is gone and so are you! Deuces! I think it was January, like 5 or 6 months after the crani that I saw him. He mentioned nothing about MRI's/MRA's or angio's, nothing.I have not been referred and it has not been recommended that I see a neurosurgeon either. I've had the same question as you. I'm at a point where I think I've been segregated because I have no insurance just a county clinic card so I only get treated when I push for appointments. I had a scan of some sort (I think CT) because I had a severe migraine and the ER thought I was having another stroke, which I had never, ever, never, considered being a continuing possibility which freaked me out. But no, maybe because I'm poor trash (according to the county) I don't get the comforts of follow-up angios or MRA's or maybe I'm wrong and those types of follow-ups aren't necessary unless there's cause for concern or if they maybe think the whole avm wasn't removed. I would just keep the appointments they set for you unless your instincts tell you otherwise and if that doesn't sit right with you, maybe you should make an appointment for a simple consultation, not an exam. Explain to your Doctor that you have questions about your follow-up treatment and you would appreciate a few (expensive) minutes with him so he can explain the importance or reasons for the follow-ups you are or are not getting.
My TRUST is solely in my neurosurgeon & I too wish there were more follow-ups. But in my experience, follow-ups w/ my NS have been only @ 3 mos. post-op & 6 mos. post-op.
I have multiple vascular malformations requiring annual MRI's which are ordered by my local neurologist, then I personally mail my MRI's to my neurosurgeon for review.
Generally, I think most of us see our neurosurgeon's for limited visits pre & post-op then follow-ups are in the hands of neurologists.
I see my neurologist every 3 - 6 mos.