Alright…I had a superficial AVM of the left temporal artery(above my left ear). It started growing when I was 18 and I had it removed when I was 20(last year)…by surgery. So the thing is…it has been about 6 months but…it’s back already. I was warned by my doctor before the operation that it will most probably appear again…and it has…ON THE SAME PLACE. I have no frigging idea how that happened but the doctor has confirmed it with me.
I’m grateful that my AVM was a superficial one, and the new one is also superficial. But I must say that I am devastated stll…by this recurring AVM. I was a competitive athlete at school and state level for kayaking and canoeing…and it seems that I maybe not be able to do them anymore. Because exercising brings a rush of blood which engorges my AVM and gives me splitting headaches.
Even without exercise, I’m left with a permanent mini-headache throughout the day which distracts me from everything.
More worrying is all these medical fees that I may soon have to fork out-all over again…
And as for the most beautiful girl in the world who is my GF…I really can’t bear to make her suffer along with me…sigh
Hi yong chun,
Thats very unlucky mate,from what ive been lead to believe though is that they usually only return if all of it wasnt removed properly in the first place.
How was it removed the first time?through a craniotomy or gamma knife?
Like you i had an active fitness regime before my avm was diagnosed and had to give it all up,even now that its removed ive been told that it would never be safe enough to return to what i was doing previously.
It really sux when we have to give up something we love doing all cause of a beast like this that rules our lives!
Dont let it stress you to much mate,that will make things alot worse,which you dont need right now,you need to be strong.
Hope all goes well for you,
Take care,Theo
Calling me “Chun How” would be fine, “yong” would be my surname or family name. I’m Chinese…
It was removed by surgery because…well it was superficial.
AVMs are indeed beasts…
College starts in 4 months for me…while many of my friends will be looking forward to college it seems that I will be facing much uncertainty in the upcoming months.
What makes me worried is the fees that I will have to pay…ALL over again…damned
Wow, so sorry to hear that. I was also under the impression that once it’s obliterated, it’s gone. I’ll be sure to discuss this with my neurosurgeon next checkup.
I must take care not to fall into the trap of feeling all sorry and pitiful for myself. well life goes on…time to work hard to raise the cash for the expensive scans and op…
Wow, that is just the worst luck! I feel bad for you! I’m not sure what a superficial AVM is? I also thought that once it’s gone it’s gone , unless they don’t get the stem ! Best of luck to you, and as far as you GF goes I guess the decision will be up to her hey? Take care let us know how you make out…
Sending Angel light and love…d
Dear Chun How,
I am so sorry that you have to go through this again after already having the trauma and stress of surgery so recently. I tend to agree with what I think that the others are getting at: that if you had surgery (craniotimy) a year ago for removal of an AVM in the same spot, you should not be seeing a “new” AVM there. I have heard of AVMs growing and changing over time, like recruiting new feeders in the case of emobolization, or becoming further distended over time as they stretch and weaken, but I think it is basically unheard of for a new AVM to grow over the course of a year, when a prior AVM was removed from the same spot. My suspicion is that your surgeon did not get the whole thing when the surgery was done, and is trying to hide this from you. Missing part of the AVM in a craniotomy does happen sometimes, but I am concerned that your doctor may not be being very honest with you about why you still have an AVM. I also agree with the other comments that the term “superficial AVM” is not generally (ever?) used, and it just seems like the doctor might be trying to gloss over his mistake. Before going through the expense and risk of a second surgery, please consider taking your medical records and films for an opinion of another doctor. Trust is such an important part of the doctor patient relationship, and if you can’t be certain that your neurologist is going to tell you the truth or take responsibility for his treatment, you may consider finding one that will. Again, I am really sorry about this news. In addition, after you get a second opinion, if the other doctor agrees that this AVM is there because your doctor missed it, I would consider demanding some kind of recourse, such as a refund of cost of surgery, so that you can have another doctor get you fixed up. I would also suggest that you talk to a lawyer. Depending on where you are, the law limits the time you have to sue (if you decided that was something you wanted or needed to do). Having a consultation about this with a lawyer should be free, and will help you figure out what your rights are. You should not have to pay for 2 surgeries yourself if your doctor made a mistake.
I’m sorry to hear about the return of your AVM, Chun How. I just had my AVM removed by craniotomy and was warned of the slight possibility of its growing back; however, my surgeons said this only happens if they don’t get the entire AVM out the first time. Since I went to a very experienced surgeon, my doctors think the chance of regrowth is very small, although I’ll still have to do a few follow-up MRIs just to make sure. You should talk to your surgeon or a lawyer about the possibility of not paying for your second surgery. You should also seek the advice of another neurosurgeon who has a lot of experience with AVMs.
(I think Chun How uses the term “superficial AVM” to clarify that his is on a blood vessel outside of his skull rather than within his brain, like most of us have.)
I sympathize with you about the costs of medical treatment. I have fairly good health insurance, but since I don’t make much money (I’m in grad school), even meeting the yearly out-of-pocket was a bother. I was really lucky that I’m on my school’s insurance, which goes from August to August rather than from January to December, or else I would have had to pay the yearly out-of-pocket twice (diagnosis in December, surgery in March). I anxiously check my insurance claims daily–I can’t wait for the $120,000 that is currently being billed for my craniotomy to clear!
Yeah, superficial because it literally just sits UNDER my skin. It is visible and touchable…by pressing my fingers lightly against the skin i can feel a lot of pressure from the blood passing through the AVM.
And yeah it was totally visible. I’ll try to dig out photos and let you guys see it if I can. The old AVM was totally bulging out of the skin and the scary thing was that it kept growing and growing. I would check the mirror every other week and see it growing.
Alright thanks for the advice guys. I’ll be sure to bring my Dad along for my next visit to the hospital and we may have some questions to ask. I’ll be checking out my possible insurance claims too…
Oh yeah. Looking back on my past medical conditions. I had two little growths when I was younger, one under my tongue when I was about 10 or 11 years old, the other near my present AVM when I was 15 or 16. Both of them were superficial but not AVMs. The doctors said they were congenital disorders too. They would bleed for hours when they were disturbed and I had to undergo some minor surgery to remove them.
I bet I have more AVMs and weird growths waiting to pop out…in due time
Dear Chun How,
I am sorry I misunderstood your post. My default emotional state is ‘outrage’ these days, so I hope you will excuse me. I am very sorry about what you are going through, it really sucks. You seem like a very caring person, with all you have going on, to be so worried about putting your girlfriend through stress. She is lucky to have someone like you!
Hi Yong Chun How.The truth is that i don’t have a clue if avm can come back again but i think the problem it’s that it wasn’t removed properly in order to be back
It sounds like you have a “non-brain” AVM just like I do. And yes, if you have surgery it is very possible (even likely) that it will grow back. My understanding of the situation is that many times the doctors can’t “see” all of the abnormal vessels and peices are left. These AVM’s are different than those found in the brain and don’t seem as easy (not that what they go through is “easy” per se) to obliterate.
And those episodes of bleeding that you mention from when you were younger, totally typical AVM symptoms. I am sure those were all AVM related.
Good luck with your fundraising for more treatment. I wish you the very best!
