I am new here and this is my first post. I suffered a AVM bleed 2 weeks ago and after the second day i had already become a lurker here…
I am facing a huge dilema. Had my avm been detected before it bled i would have gone for gamma knife, however due to the fact that it has bled and I have a 9 times higher risk of it re bleeding again I have a tough choice; take a chance and do gamma knife and pray it doesent re bleed or go for a craniotomy (in my case there is a significantly higher riak apparently due to my particular avm)
It gets even more complicated since
A) i have had one neuro surgeon who specializes in avm sugurey recently advise I go the gamma route (all the other second opinions have suggested surgery) despite the bleed chance in those 4 years due to my particular avm and the relative high morbility that is asociated with my case (size and structre mainly, despite being superficial)
B) at the current hospital I am the surgeon has estimated (maybe a bit too safeley) that I have a 50% chance of having a neurologcal defecit due to the surgical procedure no matter what. If true does this outweight the risk of bleeding in a potentially 4 year span for the radiation to do its job?
I would like to know if there are any people who had a bleed and still opted for gamma knife. And of those people how many did and didnt bleed untill obliteration was achieved and in case of bleed during this latency period if they had any temporaty or permanent defecit.
Welcome to the site! I had a bleed and then Gamma knife. The bleed was May 2016 and Gamma knife in November 2016. I got the all clear this year, end of February. I hear your dilemma, I was similar, the fear of anther bleed was there but subsided as time went on. My AVM was left temporal but on the inside of the lobe. The words of the surgeon were that he would have to “mash through a fair bit of brain” to get to it. His recommendation was gamma knife, which I took. If it bleed a second time we were going to go craniotomy.
The thought of the re-bleed was present for sure, but I weighed it against the risk of surgery, and was at peace with the decision. Now it was the right one…is there a chance on another opinion? You could bounce it off a place or two in the US for pretty cheap and see what they say, Barrow Institute for sure is well known.
Tough decision for sure, and you may not know if it was right or not until after. I can say my decision was right, but it took me 27 months to get there. Take Care and again welcome, John
Hi John,
firstly thank you very much for your answer and I am very glad it worked put for you!!
I am a veterinary surgeon and I still feel clueless about the whole situation and honestly, without sounding arrogant, I feel like the whole AVM issue is not understood 100% which is reflected by the wild varying opinions I have recieved from top doctors from my country, Spain.
Here the doctors I feel are biased towards craniotomy since they adhere to the statistic of 2-4% risk of bleeding in unruptured avm and then 9 times higher post bleed. However from my interpretation it could be said that the risk is less alarming after having read some studies that followed patients that represent my dilema (bleed–>gamma knife–> wait untill cure while running risk of re bleed) and such studies had re bleed rates lower than those proposed by the theoretical risks mentioned before and makes me more inclined to do GK surgery but then again in the case of a re bleed I might have another defecit that may be permanent or not and apparently GK on superficial avms like mine is “difficult” according to my latest consultation here, despite it being small. Finally, in the case of a re bleed and the need for a emergency craniotomy the morbility and mortality go up significantly, which is another factor that makes this decision even harder.
I aim to take the decision in the following weeks and meanwhile will be trying to aquire the maximum information possible to make the best decision.
Regards,
Sebastian
HI there. This is a truly tough decision to make. I haven’t ever had a bleed but have been strongly advised that neither craniotomy or GK is suitable for my Cerebellar AVM due to its size and position. Also it causes me few deficits at the moment in my everyday life. Apparently the risk of severe deficit balanced against the chance of being ‘cured’ is just too much. I realise many here who would think I’m completely mad. But due to this I have chosen to live with it and enjoy what I have for however long it lasts. Good luck in your decisions. Lulu x
Yes , I too had a Brain haemorrhage in 2012 caused by a ruptured AVM. I was recommended Gamma knife surgery as my AVM was in occipital area (back left of my brain) and a craniotomy was not recommended due to the damage to my brain getting to the AVM. I had 2 lots of GK, 3 years apart, and was given the all clear 5 years later. No further ruptures experienced. My permanent deficit was a 50% visual field loss in both eyes, and a brain injury affecting memory, multi tasking etc. But I thank God that He clearly
Hasn’t finished with me yet! I hope you manage to get to a place of peace in regard to your decision.
I am new here but went through a similar decision process to what you are facing. Very briefly, I had a bleed from an AVM about two years ago and consulted at a University hospital nearby and then the Mayo Clinic. Mayo suggested open surgery/resection, and as a second option GK. They made me aware of the risks you described, particularly in terms of the risks of a secondary bleed in the first 3-6 months.
As others noted, it’s a difficult decision and I still felt a tremendous amount of doubt after my choice (for GK). I worried that I was overly concerned about the other risks of a more invasive surgery and also that my fear of open surgery and the shorter-term complications were causing me to lean towards GK, which seemed so much ‘simpler’. (In reality, it has its own complications).
If I can be of any other help please let me know. I made my decision, I must admit, taking a bit of a leap of faith that I would not have another bleed and probably willfully ignoring the risks associated with not having surgery.
Hello and welcome! I had GammaKnife back in 2008 after an AVM rupture in my right parietal and occipital lobe. I don’t remember why that particular procedure was chosen for me. Right after the rupture was found, I was almost immediately transferred to the University of Maryland - Baltimore Medical Center where I was put on strict bed rest, and on a percocet or morphine due to the pain, which caused me to sleep during most of my hospitalization.
It’s been eleven years post operation, and I haven’t had another bleed. I do know that every AVM is different though.
Like everyone else had stated, it is a tough decision to make, but I hope you make it soon so you can been AVM free. Please keep us posted.
Hi and welcome to AVM Survivors network! I am truly sorry that you have experienced an AVM bleed, but you have found the right place for information and guidance from other survivors. I had an AVM bleed in my left occipital/parietal lobe, very eloquent area. After researching all options I decided to go the route of stereotactic radiosurgery (same as GK) because it was in such an eloquent area. That is what made the decision for me. I felt like the open surgery was too risky for where my AVM was located. The GK was an outpatient procedure that was relatively easy and the AVM was obliterated within one year. About 4 months after the GK I did experience “radiation brain”…aftereffects of the radiation, but it was very short in duration. Otherwise the procedure I feel was a great success and am happy I took that route. I went to UCLA for the neurosurgeon and procedure. Please contact me if you have any questions. Best of luck to you!
I’m sorry you had a bleed. I had mine five months ago and know exactly the process you are going through. Mine is a large occipital/parietal AVM. My surgeon said there’s a 40% risk of leaving me with deficits with surgery. I ended up having Gamma knife three months after the bleed. I have since seen an interventional radiologist (embolisation) who says he would have offered me surgery through the groin which can be easier with deeply located AVMs, but that also has significant risks and is less proven than radiosurgery. If I had less impatient I would have had this as an option (it still is but then I’ve taken two risks…SRS and endovascular surgery). He did say that SRS was a good option for me and that I should feel good about it. He may even have gone for that in my position. I had SRS at Sheffield (UK) who have done 7,000 AVMs and the whole process was amazing. I recommend you seek out a high volume center who have treated many AVMs as experience is key and often locally ahead of the latest published studies which may be a few years old. Things are moving fast in terms of targeting software etc.
My main neurosurgeon who I made the decision with gave me good advice early on. You may have a risk of rebleed, but that accumulates over time, whereas the surgical risk is immediate and irreversible. Therefore you should not rush this treatment decision. 50% morbidity is a very high risk and I would be surprised if conventional surgeons want to take that risk without strongly considering alternative options, unless they have assessed you as having a significantly elevated risk of further bleeds. I have a large draining varix (venous aneurism) and my surgeon still doesn’t recommend a craniotomy.
Emotionally I went through quite a process for the first six weeks. I was keen for surgery, then scared, then it looked like I may have no low risk options and ‘medical management’ was discussed. I hated the thought of leaving it to chance but was starting to come to terms with that as a possible outcome considering I had lived 41 years with no issues and was already feeling a lot better. I’m running again, getting fit and I’m not worrying about bleeding. It’s amazing how you adjust to your new situation, but this takes some weeks/months and it’s worth taking time to adjust and carefully consider your options (subject to your medical advice).
Anyway, long story short my AVM was deemed suitable for SRS (compact nidus) and I have risk to my vision and motor function, and of course a low risk of the usual radiation nasties. Stress should be minimised during the latency period. The vascular surgeon gave good advice on this. Exercise is fine he said because your vessels dilate and he can cycle 50 miles and BP hardly moves whereas he argues with us wife and the veins on his hand pulsate - avoid stress! I’ve been able to reduce my job to two days a week and am enjoying my life, my kids, my hobbies and intend to continue like this (god willing!!) until it’s obliterated. Life is good.
PS: did you have any deficits from your bleed? I have a minor visual field deficit and that’s about it.
All the best,
Jonny
Hi all. Ive had 3 bleeds, 17, 18 and 24 (im now 41). I had GKR twice, once at 2005, and another on 2008. I had no bad side effects. I had a MRI scan about 2 years ago, and they say that almost all of the small bleeds, have “gone” as they say.
I had absolutely no option at all, GKR was the only way.