In 1999 I had a avm corrected at Wills Eye by Dr Rosenwasser by embolization and was told I needed no follow up and that it was glued and permenant for a lifetime. Lately I have read some articles that say embolization is not complete and 100% so I wonder if over time they have realized that this is so. I am calling my Dr Monday to ask this...
These thoughts came about when I recently say over the last year started getting headaches which I thought were from bad eyesight as I am also making an appointment for new glasses mine are old and outdated Rx cause I work on the computer all day with eye strain. I have also over the last year or so started getting nosebleeds just on the spot which was my first indicator with my last avm.... athough my reg. dr thought this was from low iron.... I am a 30 year vegetarian and so my iron runs on the low side.... when I keep my iron up my nosebleeds stop so the iron thing seemed resonalble.. I had a bruit in my ear very loud with my first avm I DO NOT hear that now although I know it depends where it is. So other then headaches and vision which normally goes as you get older... I really didn't think of the avm thing until I read the articles that they may not NOW be complete from the glue.
Would like some feedback on this... as I said I am calling my Dr and Eye doctor too to on Monday and I am hoping that mine was one of the ones that are completely shut off.
Now my big problem... I have no insurance to run to Dr and pay for MRA's (this is what found it last time).... or of course I could just go to my Dr and get a script for a MRA and be done with the worry or whatever I had to do. Any suggestions here..
Thanks for listening hope all you are doing well..... up til my now questions all has been wonderful for me. And I believe my Dr is a god....
It is has only been recently that I've heard on this site that some AVMs are not 'compete' with embolizations. The other recent comment has been that some AVM's can resurface.
I called our neurosurgeon's office about the question of AVM's coming back. What she told me was that non-brain AVMs can reoccur, so a person has to monitor the situation. I'm not clear if they 'come back' in the same area, or if you have an extremity AVM, it might present anew in another spot.
Also, she told me that brain AVMs in adults, once treated and declared GONE, do not re-present. They have found though, that bran AVMs in young people, when obliterated, can re-present, so now they are recommending a followup angio several years out as a followup.
Hope this helps, but suggest you call your DR for sure as they would be the best source of info on YOUR AVM.
Ron thank you, sure hope this is the case… I was 39 when I had my brain avm glued… so hopefully this is the case… sure would like to get an MRA tho to be sure… hate to wonder who know possibly another one… I will call my DR in am tomorrow. thanks again.
I am still waiting to hear from my Dr ... I called asking about this still considered permanent and they said they had to pull my records in storage because it was 12 years ago (now they are online) but so far no return call I will wait another day and call again.
Has anyone here had an avm corrected and then had it return, resurface or open up?
Thanks to all ... wishing you all the best as always.
Hi Q. I was 27 when I had my embolization and at the time was told that I would have to go back every 10 years to have my embo evaluated by angiogram. My Dr. told me that the chances of the glue deteriorating or slipping were extremely low but recent studies (it was 2004 at the time) showed that younger patients, with more active lifestyles raised the risk. Of course that freaked me out so I pressed for more info and he said that the glue used is designed to last over 60 yrs. Their belief at the time was that an active lifestyle may drop the 60 yrs down to about 55yrs, but it was still being studied and I had nothing to worry about.
I should note that I was treated at a teaching hospital and agreed to be a case study so they have asked me to come in for checkups more frequently than the average patient. The 10 yr check ups are more for the research than the risk of embo failure. I hope this eases your fears a little.
thank you so much for this info. My doctor called and is sending me a script for a MRA first. Then possibly an angiogram. I was 39 when I had my so I would be thrilled to get 50 years.... 89 years old is a good life.
So we will see what happens.... I sure hope for your and I and all who have glue it lasts... truly don't want to do this again. Thank you so much... I will report after the MRA sometime this coming week. Praying its nothing... its been 12 years since my surgery and was told no follow up required... once its done its done..... ?? will see
Julia H said:
Hi Q. I was 27 when I had my embolization and at the time was told that I would have to go back every 10 years to have my embo evaluated by angiogram. My Dr. told me that the chances of the glue deteriorating or slipping were extremely low but recent studies (it was 2004 at the time) showed that younger patients, with more active lifestyles raised the risk. Of course that freaked me out so I pressed for more info and he said that the glue used is designed to last over 60 yrs. Their belief at the time was that an active lifestyle may drop the 60 yrs down to about 55yrs, but it was still being studied and I had nothing to worry about.
I should note that I was treated at a teaching hospital and agreed to be a case study so they have asked me to come in for checkups more frequently than the average patient. The 10 yr check ups are more for the research than the risk of embo failure. I hope this eases your fears a little.
other than the avm opening up if the glue slips… can there be other problems? where can the glue travel to ? would that cause another block or stroke… ? just a thought? thanks for all your help
Hay mate, you sound like you are one of the lucky one’s. Some times it is not a good idea to read the negative stories, they are people venting, we all need to have some where to vent, and someone to listen to us. Don’t panic, get your eyes checked and new glasses and see what happens, if you are still getting headaches get a quick check done MRI or CAT with contrast to put your mind at rest.
the headaches arent the problem its the nosebleeds that concern the Dr. MRA is required regardless of eyes. Also, just because we ask a question doesn’t mean we are panicing… maybe just want current education beings mine was 12 years ago my understanding from talking to my Dr (not listening to stories) is that 12 years ago we thought it was permanent and now they say to monitor due to glue deterioring or moving. So I am looking for current information. MRA will be done soon as I get the money I have no ins.
From my understanding of how AVM’s work (my daughter has an extremity AVM- so not sure if exactly the same dynamics apply to a brain AVM). Embolyzation doesn’t cure it, it merely stops the feeders from providing blood flow to the nidus. BUT- AVM’s are very intelligent growths, that when you close up one feeder the AVM is actually able to create new feeder veins. So its possible that your AVM has created new feeders and is regaining strength. The glue could still be blocking the original feeder veins - as glue is supposed to be permanent…the MRA that you are to get will have all the answers though
My own experience with this is that my spinal cord AVM was 'obliterated' with an embolization in 2006, but I learned last year that it has grown back.
I strongly suggest asking your doctor to give you regular MRIs and even angiograms (mine are done every three years, or more often if I'm experiencing problems) to check the status of the AVM. If your current doctor won't do that, if it were me, I would find someone who will.
My neurosurgeons told me that even with successful embos I need to be followed on a regular basis.
Problem is I don't have insurance. My AVM 12 years ago was detected on an MRA and not on CT or MRI. After the MRA she said an angiogram may be necessary depending on what he sees. Again no insurance .. emergency rooms only HAVE to treat emergencies I have often been sent home to see a dr or specialist cause of no insurance. People are under the impression that emergency have to treat whatever and that is not so in NJ .. if I go in with a stroke they have to treat me (immediate emergency) but the test if not an IMMEDIATE emergeny is upon their descretion..... we are going day by day. Just want to get started on something.
