Hi!!
I know this is an old thread…
But I wondered what Eric went for in the end?
I am faced with the same decision…
My surgeon recommends surgery as I am a very anxious person and two years is a long wait- are there on the other side of things I think am I being silly making this decision when all I would need is one gamma treatment?
I need to make my decision soon… I have a pre-op for surgery on the 19th February… i am so scared! I am 28 years old with three children.
Thanks
Natalie
Hi Melanie & Eric, I had gamma knife surgery May 2017. I am 46yrs old now but in my early twenties i started having grandmal seizures. My consultants said it was due to my avm. I went for the embolisation treatment in my twenties but did not realise I would be awake which made it hard for me to stay calm. Unfortunately in less than half an hour the procedure came to a stop as the surgeon said the risks were too high as I needed seven blood vessels to be sealed. He said because of the location of the avm in my brain it was to risky to carry on and that maybe in the future I could try another treatment if one became available. So I tried to forget about it and just treat my epilepsy with medication.
Forward 26yrs and I have finally had gamma knife. Why so long you may ask? I was not informed that this procedure was available in the UK and secondly because my anxiety and life just went on.
In the last 5yrs or so I went to hospital 3 times before I made a final decision to go ahead. The first consultant I went to see on two occasions did not make me feel at ease, then my brother passing somehow gave me the courage to want to see another consultant who did understand my general anxiety disorder and because he explained things in a simplistic way and made me feel more human than just a number then i came to the decision in finally having the procedure done.
The problem with gamma knife is the waiting game. It’s felt like my life is on pause. Some people say that carry on with life as normal which is all you can do. Unfortunately speaking for myself it has made my stress worse and anxiety sky high at times, this is because my anxiety will mimic the sensations I have before having a seizure. I did go to a epilepsy group once but that made my nerves worse hearing people’s stories so I did not go again. That’s not to say it does not help a lot of people just not me at the time.
I was told it could take up to two years for the avm to to completely go but my last appointment a consultant said it could be up to three yrs if it is successful, if it is not then I would have to go through the procedure again and that could be another 2-3yrs. I have been told that the success rate is 70% which is high. However I was also told that a lot of people can have embolisation and after one op it would be gone, saves a lot of stress if that is the case but obviously that is not the case for everyone.
I am glad I have had gamma knife at least and for several weeks after I was feeling better because I was not agonising over it anymore. However I have no choice but to wait but I know the waiting is having an effect on my health.
I requested to have a general anaesthetic because of my nerves. I was asleep for over 8hrs so glad I did not remember anything. When I awoke I had lost complete sensation in my left leg and was scared. Eventually the same day the sensation came back. My hair was matted at the back of my head because of dried blood at the pin sites. My heart beat went up to 160bpm later that night but was put down to a panic attack. I stayed in hospital overnight and released the next day.
The following day I felt exhausted and did do for many weeks later which they say is normal. My exhaustion now is caused by medication and low mood. I have spent a week in hospital since with extreme headaches which they said was due to swelling of my brain which can happen after post treatment. They then changed their minds and said it was just headaches. I have felt off balance a few times but that has gone and have had one grandma seizure so had to give up driving again for another 12mths.
One last thing that after my op my head was numb for many months and also became very sensit I’ve to touch. I was worried that I was going to lose sensation for good and the sensitivity would stay. The odd thing is that when I mentioned this to the hospital they said “It’s nothing that we have done” obviously covering their backs.
On a trip to my local hospital I was told that this is often the case for people who have radiation treatment, after all its radiation. They told me to use only baby shampoo as it does not contain any harsh metalk like other shampoos and conditioners do. I find it odd to this day like a hospital that carries out gamma knife on a daily basis does not know this.
So I guess it’s a case of talking to your consultant and researching all procedures available to you and making a list of all the positive and negative’s.
I hope I have been of some help and not put you off. Drop me a reply if you want to ask me anything. If I don’t hear from yourselves then good luck in whatever you decide to do.
Kind regards,
Jason
Hi Natalie, I’m sure I read somewhere that you have a right temporal avm. Is that correct? What size is it?
If that is correct then I would like to share my views with you as I also have a right temporal avm. I have had gamma knife surgery last May 2017.
I understand that you are very nervous which is very understandable being in your situation. I am a very anxious person and when I decided to go ahead with gamma knife I said the only way I would have it done was under general anesthetic. Which is what they agreed to do. Saying that there are risks doing it under general. Morjority of people stay awake for the procedure.
I was told that I have a 70% chance of it working first time around but I would be waiting 2yrs before my results maybe 3, I have now been told by another consultant. Some people are lucky and only need the one procedure where as others need more or a combination of both embolisation and gamma knife. There are lots of factors to take into account such as the size of the avm, location, if you have had a bleed etc.
Trouble is different patients get told different information. Obviously they are going two as everyone’s situation is different. What I am saying is sometimes it’s best using these websites for support and guidance but best to talk to your consultants.
In my early twenties I went for the treatment of embolisation but op was stopped as it was too dangerous because of the location of the avm and the fact that they had to embolism 7 blood vessels with the chance of complications each time. I was very disheartened by the process and carried on taking medication and tried living life putting the avm to the back of my mind knowing the risks.
I did not know about gamma knife until many years later and it took me three appointments with two consultants until I could make a decision. I decided to go ahead with gamma knife because it seemed less of a evasive procedure.
Now for the negatives, just remember everyone is different but this is the side effects I suffered from. When awaking from the op I had no feeling in my left leg which the sensation came back several hrs later. Least of my worries was my hair matted with blood at back of head due to where they had fixed head frame.
My scalp was numb and very sensitive which I was told by my local hospital would go which it has done. They told me to use baby shampoo as other shampoos have harsh metals in them. I spent 1wk in hospital several months later with bad headaches and I also had balance problems on a few occasions which are not happening now. I have also had one grandmal seizure which I have started clobazam alongside my other anti epileptic meds.
You just have to weigh up the pros and cons and stay strong. It is hard to remain positive but if I can be of any help then just drop me a reply. If I don’t here from you then good luck in whatever you decide to do.
Kind regards,
Jason
Thank you so much for your reply!
I am so confused you wouldn’t believe my head is just full of information and I can’t decide which option to go for.
Do you know the results of your gamma treatment yet?! Your story sounds pretty scary!
Mine is my right frontal lobe 2.5cm.
Are you glad you made that decision?
I am swaying more towards surgery just because it will be totally gone but then I think I am I crazy when gamma knife is way less invasive!
I need to make my mind up fast as my surgery is going to be the first week in April I have my pre-op on the 19th Feb!!
I have dizziness already which no one can work out why so having surgery I am worried it will affect that and I will barely be able to walk! But then walking around with this for another two years I can’t imagine doing either…
Now you take epilepsy drugs does that mean you can’t drive?! Would have that been the side effects if you had surgery? Gosh bless you!
I think I need to talk to a consultant about gamma knife treatment but I am worried it’s going to hold back whichever treatment I decide…
Thanks
Natalie
Hiya Natalie,
I thought I’d just share with you my experience,I had a right temporal lobe avm 3/4 cm which was a grade 3 on the spletzer chart, part of the avm was near my motor strip so my surgeon decided I would be better of having gamma knife or the leave it alone approach as I wasnt having any symptoms from it. They Found mine accidentally through pulsatile tinnitus. I decided to go ahead with gamma knife treatment. I had to have two doses 6 months apart. It wasnt as bad as I imagined it to be, the most uncomfortable part was having the halo fitted and then laying still on my back for hours,I stayed in hospital Over night just as precaution and was discharged the next day both times. After, the pin sites were a little sore but pain relief helped relieve the symptoms. I think I was back to work after a week of both times. I did loose some of my hair where the radiation was targeted but the rest of my hair covered the bald patch and it started to grow back within a month or so. When I went for my second treatment they said that the avm had shrunk by 10% in 6 months so that was really positive. My only really bad side effect from gamma knife was the fatigue,I would need a little nap each day, but that could of been due to lifestyle rather than treatment. Working full time as a 1:1 with children with complex behaviour problems and having five children of my own. Unfortunately a year after my second treatment I suffered a bleed, my surgeon recommended operating and taking it all out.so I had surgery which completely removed the avm. It was a scary decision to make and not one I would wish upon anyone or have to make again but it was the right choice for me. I had never had an operation in my life and was absolutely petrified,but it wasn’t as bad as I built it up to be, even though people say it’ll be ok you’ll be be fine you still have those “what if thoughts” I don’t think there is anything to help with those. The day of the op I was put to sleep and woke up avm free. Headaches were again relieved with medication. I have been so lucky as I haven’t suffered any major deficits that others have. I did have two major seizures in one day 5 weeks after surgery. I was put on keppra and have been seizure free touch wood!! I also have fluid on the brain which they think was due to the bleed rather than surgery, that is just been monitored as I am not really having symptoms to warrant inserting a shunt and risking another brain surgery. As from my last checkup the fluid is starting to decrease on its own, so fingers crossed no intervention will be required. Hope this helps a little in the decision you need to make, just remember everyone’s experiences are different and no two recoveries are the same,the choice needs to be one that you are comfortable with and once you have made the choice be at peace that you have made the right choice. Feel free to ask any questions and I wish you all the best for which ever treatment plan you choose. Xx
Guys,
I’ve moved you to a new thread. I can’t find anyone in the earlier part of the conversation who has logged on since 2010!
I think it is a really useful conversation to be having. I just think it is distracting for new readers to read the longer history and hope for a reply from a very old member.
If someone from the past turns up, I’ll re-join the conversations (If I can!)
Best wishes,
Richard
Hi Natalie,
I don’t know the results yet as it will only be a year this May. I am going for a mri then but was told I shouldn’t expect much of a change as it normally takes 12mths for changes to start happening. My consultant has agreed to do a mri as I have requested one. Where as the hospital I had the procedure done wrote to my local hospital and informed them I should wait 2yrs before having one.
So who knows if there will be any changes, if they is then I will feel better and if not then it is what to expect.
Answer to your question is I am glad I had gamma knife because the risks were too high for embolisation. Strange thing is they did offer either but further down the line they said it was gamma or nothing because of the risks.
I totally understand you wanting embolisation as you want it over as soon as possible so you can get back to a normal life. Is your avm causing the dizzy spells? Can’t understand why your hospital cannot give you a diagnosis as to what is causing it?
I have had to give up my licence for 12 months so due to get it back again in October. It’s not the first time as I have had to do it several times over the last 20yrs but it is the down side to having Epilepsy amongst other things. You can still drive on Epilepsy medication but if you have a seizure you have to inform the DVLA who will take your licence away from you for a period of a year.
I am sorry I did not get back to you sooner. My heart goes out to you but I am sure whatever you decide then everything will be OK. Unfortunately for some it’s a long road.
Hey!
I have everything crossed for you for the results in May. I totally agree with you I would not be happy waiting two years even a year is too long!! You are nearly half way through 
I haven’t been offered embolization my surgeon says he doesn’t like the risks of it (he said its the same risks as surgery but with a lower success rate)- he has given me the option of a craniotomy or gamma knife…
They just don’t seem to be interested why I’m dizzy- I do have a very low blood pressure with a high heart rate maybe that has something to do with it. The anaesthetists have told me to start taking beta blockers which I am frightened to take as I know they lower your blood pressure more- i dont need to be more dizzy then I already am but I guess I have to do what they say!
Xxxx
His Natalie,
Thank you for your kind words.
Have you seen your GP re you being dizzy? I think it would be a good idea. Also read up on beta blockers and ask your GP what he thinks about medication. I started a new drug called Clobazam 3 days before my procedure and i am still on it now. It helps with the anxiety and lessons the risks of seizures.
Like any drug there can be side effects short or long term or when withdrawing from them. Don’t just take them because you have been told to. Research medical sites and talk to your GP, definitely get a second or third opinion if you are unsure.
Thinking of you.
Jason
Thank you so much for sharing…
Tbh from what do you have describe both sound terrifying! I know you are not trying to scare me but I want to hear honest stories…
I am sorry to hear that you had a bleed 
this is what I worry about I feel that gamma knife must irritate the AVM- this all must have been terrifying for you! You must feel so brave…
An 5 kids omg … an work full time with kids!!! I think you need your head checking again hahaha!!! Wow you really do sound like superwomen
Now you are on the keppra does that mean you still can’t drive? I need to be able to drive we live out in the sticks! This is just crazy so I guess you wish you just went straight for the surgery to begin with- but you just never know obviously you went for the less invasive option… and if that had work that would be perfect!
I keep thinking I should go for gamma as it’s so much safer mines in the frontal lobe which apparently is the easiest place to get to and it’s 2.5 centimetres so it’s not huge- but then I do hear that smaller ones rupture more than bigger ones… omg my head i keep changing my mind!
I worry with surgery as I already feel so dizzy and my surgeon says it’s not to do with my AVM- what happens if I’m even more dizzy after surgery!! That frightens me like crazy…
But I’m so anxious every little aching pain after the surgery I’m going to think oh my god what’s that?!
My friends have told me to maybe get a second opinion from a gamma doctor but the problem is is my surgeon has my surgery pre-op date and he said my surgery should be in April if I go to see a gamma doctor is just going to hold it all back… but then the gamma doctor might say that Mines really easy to treat and I will be fine… i just dont know.
How are you feeling now? How long would you say recovery was? Are you constantly frightened of having another seizure?! An this fluid, i really hope that goes away! Xxxx
Hi Natalie,
They sound scary but at the time you just have this inner strength to get through it all. It was no worse than being in labour!! Tbh labour pain was probably far worse, and like labour the pain disappears as each day passes, but like I said I was extremely lucky as I have read other stories where people suffer on a daily basis. My surgeon never commented on what could of caused the bleed but I was under a lot of stress in the build up to the bleed so I’m not sure if gamma contributed or agrivated my avm. My bleed was nowhere need as bad as others have experienced. My avm bled into the ventricles so it didn’t bleed into brain tissue so as a result I was fully conscious and aware of what was going on. After gamma treatment I wasn’t allowed to drive for a month as a precaution of having seizures,was a bit of a pain but the time soon flew by. After surgery you also cannot drive, I can’t remember what the time frame was for that, because I suffered a seizure I had to inform dvla who revoked my license for a year, from the date of the seizure, aslong as I stay seizure free I should be allowed my license back in June 
. I don’t regret doing gamma first as it was the less invasive option. Both options come with their own risks it’s a matter of weighing up the pros and cons and being well informed. I had the mindset of what I don’t know won’t hurt and just deal with problems as they arise, otherwise I would end up crazy as google always show the negative stuff. After gamma I pretty much resumed to normal life, life carried on, the days lessened where I didn’t think about the avm on a daily basis anymore. As for dizziness I never really suffered from it, after surgery I actually felt more energetic it was only when I had the seizure that things changed, I become dizzy and had brain fog. I now put that down to the fluid on the brain rather then surgery or the keppra. I do suffer from anxiety now which was quite bad to begin with but I expect this is down to the trauma of everything, as time passes so is the anxiety you just learn to rationalise things and put them into perspective. Time is a great healer and as others have said “recovery is a marathon not a sprint”. As for how I’m feeling now I am pretty much back to my self. I still have hurdles to over come but the hurdles are getting smaller!!! Getting a second opion from the gamma knife team won’t hurt, be well informed on all your options before you make a decision. I saw the GK team in the September and had my first treatment the following month so it may not affect your surgery date if you choose not to persue the GK route. I would recommend seeing them knowledge is wisdom ( I think that’s the right saying) 
. I hope this helps a little, sorry the reply’s rather long but it’s hard to include all the details in a short reply. Feel free to fire away anymore concerns or questions.
Amanda xx
I had a similar decision to make and know how difficult it is. My AVM in small and in my left temporal but a grade 2 as it is on the inner side of the lobe. When I went in to the hospital my initial neurosurgeon also does the embolizations. When released post bleed home for recovery, and fortunate to only be on steroids as there was though of needing a shunt to drain, I was leaning towards craniotomy. At my first follow up another angio was scheduled prior to decision. I said to the Dr. that I ask one thing of him, when all the results are in I will ask him what he would do and would appreciate an honest answer. Fast forward another 2 months for follow up post second angio, the Dr. looked directly at me and said if it was him, he would go gamma knife. Made my decision easy, he referred me to his partner who he had examined and discussed my case with prior to me attending. The reason being is they felt some deficits with sight, right sided weakness were likely with a high likelihood of seizures. The risk was far less with gamma. It made my decision easy, we did discuss balancing that with the risk of another bleed. Had the likelihood of deficits been equal I would have opted for craniotomy. That being said I’m now 15 months post gamma, and time is going by quickly. I fully understand the difficulty in decisions, its important to have as much information as possible, and in my case a Dr. who was willing to discuss my case with colleagues, at the end of the day its risk based decision making. All of us have different factors to consider in addition to the surgical risk, anxiety levels, blood pressure, and a multitude of personal circumstances. Take Care, John.
Hello, and I feel your pain with this decision! My own experience with a right frontal lobe avm is that my MD recommended Gamma Knife as being “much easier”, and I did go ahead with that procedure. It went fine, only problem was sore scalp, minor hair loss, and some brain swelling that occurred about a year later that was treated with prednisone. Unfortunately, I experienced a bleed two years post gamma, after I had stopped worrying about it completely! I was confident that it was shrinking, which was confirmed by mri.I was not experiencing any “symptoms”, blood pressure was fine, etc. I then had an embolisation and craniotomy on an emergency basis which of course, was no fun. Life was on hold while I recovered two weeks in hospital, and then two weeks in rehab. I have had a very good recovery after the craniotomy, and a six month follow up angiogram confirmed that the avm remains gone. I have never had a seizure, and have no lasting cognitive, or physical deficits related to the avm or the treatments. I did therapies (ot,pt,speech) as routine supports for one month after surgery, and was “released” with no further recommendations. Three months later, back to full time work, parenting, etc. It is a hard experience no matter what, and I can’t discount the impact of anxiety about the unknown. I also think that some neurosurgeons are reluctant to estimate risks because they truly do not know and each person is different. What ever you decide, have faith that it is the right decision for you at this time, based on these circumstances. It will work out!!!
Hi Natalie! I just had gammaknife as an option, they tried to do an emboization but they couldn´t reach the artery because it´s too deep and small…surgery was completely out of option because I would stop talking or walking…so here I am at 14 months of anxiety and suffering after GammaKnife, I´m always saying to everyone that I wish I had wake up from the avm rupture with a scar in my head and that´s it…avm gone! Hope my opinion helps…having the option…surgery it´s what I would chose without hesitation.