How do You Make The Decision To Go For Treatment for An AVM That Has Not Bled?

AVM Dilemma

In two days time I am about to go for a gamma knife procedure to treat my AVM which has never bled. I have spoken to three specialists and the verdict is coming down on the side of getting it treated.

My gut feel initially told me to get it treated as well but some new information has come to light which is seriously concerning me. I will explain how I have arrived at my decision points to date and why I now feel like a condemned man but armed with some information that may or may not help. Hopefully, someone out there may have some further insight so please excuse the length of this post.

My Diagnosis

AVM never bled. Located towards the back of the brain on the left side - (sulcal small left occipital AVM with no parenchymal changes in keeping with no bleeding history). Located not far from the visual areas. They think there is a small aneurysm on the blood vessel but this is not that clear from the MRI or angiogram results. They describe this as a small intra-nidal aneurysm. My AVM is just less than 3cm and graded between 1-2.

How Did I Find Out About My AVM If It Has Never Bled?

I am 53 years old and from around the age of nine I can remember always having strange sensations in my head and constant itching on the left side of my scalp. I used to try and read medical books to see if I could find any information because initial visits to the doctor revealed nothing. This has continued right into adulthood.

After several years of talking to my doctor about itching scalp and quite recently headaches I finally pushed harder when I received an electric shock behind my eye when I was driving. It was so painful I pulled over until the pain subsided. I wear contact lens so went to the opticians and got checked out but they could not find anything and referred me back to my doctor.

My doctor could not find anything and tried to politely tell me not to worry. I told them I wanted a brain scan and they said no - they could not medically justify this. This led to a big argument and showdown with my GP. They were more concerned about their professional reputation and what to say in a referral to the radiologists. I stood my ground and said I would get a private scan and slam the results on their desk if any abnormalities were found and wrote an A4 page complaint letter. They gave in and the diagnosis was confirmed.

How Do You Decide What Do About An AVM That Has Never Bled?

Basically there are people out there who have AVMs that have never bled so what do you do about it? The risk of a bleed is said to run at between 2-3% year on year. I’ve seen other figures that differ slightly but this will do for now.

My consultation with Dr Mario Teo at Bristol Southmead was excellent in the way they explained everything and presented the options for me. My initial reaction from all the advice given was to do nothing until I came to terms with my condition and went away to do my own research. A follow-up consultation was subsequently booked for me.

Mr. Teo in my consultation mentioned the gamma knife procedure as a viable option. Research uncovered the fact that Sheffield Hallamshire Hospital are one of the leading centres of excellence in the world for Sterotactic Radio Surgery (SRS) where they opt for the gamma knife procedure. I asked my consultant to make a referral for me which he did.

At Sheffield neuro unit I met Mr John Yianni - Consultant Neurosurgeon. I managed to find the magic formula I wanted to discuss with Mr Yianni to help me decide what to do. Basically, how do I calculate the actual risk of my AVM bleeding or ultimately killing me?

The formula I found is this. The overall risk of rupture in a patient’s lifetime is 105 minus your age. So, for me at 53 years old, my lifetime risk of rupture is now running at 52 percent. However, Mr Yianni informed me that the fact that I have an intra-nidal aneurysm associated with my AVM this percentage is higher - it could be at 60 percent risk. Aneurysms associated with AVMs are apparently different from other aneurysms you hear about but still pose a significant risk.

So what do I do and What Are the Risks?

Mr Yianni said that if I was 74 and my AVM still hadn’t bled then maybe they would lean towards not doing anything about it. At 53, his opinion is that it would be wise to go ahead. I discussed this with Mr Teo in Bristol and his view is that based on my diagnosis it is a ‘glass full or half empty’ discussion based on my attitude to risk. Can I live with this thing in my head knowing the risks?

The next key question for me then was what are the risks of going ahead with the gamma knife procedure?

From everything I am being told my AVM and the approach to treating it is straight forward via the gamma knife procedure - that’s Mr Yianni’s comments. Apparently the risks are low. It works very well, but works gradually. MRI / angiograms over the next 2-3 years to assess the success of the operation.

The risks that have been explained to me include lesions occurring - 1-2% risk; because of where my AVM is - on the left side close to the visual area of the brain, then the vision on my right side could be impaired. These side effects are likely to be temporary and could take months to appear up to six months and just as long to disappear. The risks are created by swelling, oedema / necrosis are the terms used for the cause of the inflammation. They are however seeing less and less of this necrosis because of changes in treatment procedure and less radiation being used. A short course of steroids would be prescribed if this occurred.

Chances are it may not happen but it’s still a risk. The actually defect that could develop is called a visual patch defect where you lose a small part of your visual world. Speech and sensory defects are a small theoretical risk as well but likely to be temporary. One can also suffer a seizure but Mr Yianni said that this has not happened in the past. Apparently the Sheffield unit has treated more AVMs than any other centre in the world so the statistics they have is strong data. I will show you the break down shortly.

There is a risk also that you make get headaches. There is a one month driving restriction after the gamma knife procedure. Risk of bleeding after the treatment does not go until the AVM has actually gone. Hence this is likely to be after a couple of years. Once the AVM has gone it is not likely to come back. The risk reduces over time.

In summary on risks, I came away from my consultation with Mr Yianni saying that the overall risks associated with surgery when considering all mentioned above is around 2% compared with my 52% risk of an AVM bleed.

Happy days one would say, go ahead and remove the AVM! Only a few days of tiredness after surgery and I can go back to swimming, playing football etc. Hence, this is what I have decided and will be going under the knife in 2 days time but I am felling like a condemned man despite talking to three experts who say it’s a good decision to go ahead.

[ content redacted by Seenie of Moderator Support pending review ]

In summary, I hope you can see the dilemma in making a decision about whether to have an operation or not. I am going to keep my appointment because I am going to be having detailed scans combined with discussion on the day and will put all this to the consultants. If I have any doubts or negative feelings then I will walk away.

Thank you for reading if you have got this far.

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Haha rewind one year ago and I was in the same position. I also couldn’t take the chance of walking around wondering when I will fall over and possibly die. I am 52 with brain avm which has caused an aneurysm. It’s a personal choice, every case is different and you need to learn as much as you can. I have just started treatment and it felt right from the beginning. I won’t lie and tell you that I don’t second guess my choice because I do sometimes and that is normal. Good luck!

Hi

Thanks for your feedback which helps to hear about. I agree that every case is different. Did you have the gamma knife treatment? If so how did you feel afterwards and are there any side effects of note?

Gamma was not an option for me. Just had my first embolization, having second on Thursday then third and craniotomy on the 28 th. It was either this or wait and see when it would rupture. There are people on here that have had gamma.

I’ve started reading through the other posts on gamma knife which is proving to be quite insightful. Good luck with all our treatments.

Oh cool. There’s alot of information out there. I am comfortable with my decision but as the surgery date approaches I’m nervous. Good luck to you also.

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Your diagnosis sounded just like me in relation to age,avm size and location. I had gamma knife as I decided I wanted it fixed. Mine was found due to a couple of seizures. The meds lamotrigene and clonezapan cause side effects and sometimes I have have bouts where I just don’t feel 100% .No deterioration to eyesight as I was told may happen. I’m glad I had gamma knife. I feel less like a ticking time bomb. No rehabilitation and I think I could drive the next day . Any questions I can help with , just ask. Regards.Grant.

Thanks so much for this feed back Grant. I feel lucky not to have had any sort of episode. However, the sharp electrical eye pains are like a warning sign which I think I should heed. It’s great to hear that you had no physical effects and felt able to drive the next day. The 'ticking time bomb description neatly describes how I feel and is a phrase I use often. Good luck with your continued recovery.

Hello, I read your post with interest as I researched and interrogated the descisions made about my treatment made by the consultant treating me in 2015, to the point that I also complained to the trust and moved my care to another London Hospital. In the end I took the complaint to the Ombudsman as my care was completely mismanaged. The Trust acknowledged this in a measured way. But it still happened. I was initially recommended gamma knife without full diagnostic tests and set on that pathway. I had a very alarming initial appointment with the gamma knife consultant who told me in very frank terms it was incorrect for me. As Kell says every AVM is different, I had seizures and sight affected migraines which led to my diagnosis but this is after years and I mean years of significant symptoms I can first date to August 30 years ago, I am now 37. A bit like you I was palmed off by my GP and about 2 weeks prior to the seizures had a stand off with a GP and the Practice Manager. Although I had another two conditions one of which was diagnosed after the seizures in 2014 the GP told me the migraines I had were just related to endometriosis. Although yes, migraine can be associated with this I was having numbness, aura and light affected issues. I consider it one of the luckiest things that I had seizures when I did although it was traumatic as I am certain that this was the only way in which I was going to be diagnosed. As much as I love aspects of the NHS some of the Consultants are a bit complacent, high handed and frankly arrogant. I have met some great ones and some who are definitely from another time period and do not like to be asked what are very legitimate straight forward questions.

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Hi,

Thanks so much for sharing your experiences. It’s really sad to hear about the mismanagement you highlighted and forums like this really help us all to learn and ask the right questions.

I am up in Sheffield now and have just completed all the preliminary blood pressure, weight, MRSA tests etc. On Monday I am having another MRI and angiogram to then allow the consultants to come up with a treatment plan which they will discuss with me. Your feedback about mismanagement has raised several questions which I will get the consultants to answer to make sure I have 100% peace of mind going into the treatment. If I don’t I will not go through with the procedure.

I have worked in the NHS indirectly through selling medical equipment and have interacted with a lot of consultants. I agree that there are some whose arrogance beggars belief but the majority on the whole are open to questions. I certainly have plenty to ask!

I hope that the prognosis for you is a good one and thank you once again for sharing your experiences.

Good luck Alphonso, I was looking for peace of mind before I went into any procedures. I had to be sure to reassure my family and in turn reassure myself and go into the treatment completely trusting the Consultant. I really believe they can sense it and this helps them do their work. I was fortunate enough in the end to find someone I completely trusted. I hope this happens for you in the coming days. I will think of you on Monday, I hope it goes more than well for you,
Laura

Thank you so much Laura. I will provide an update in a few days time. Regards, Alphonso

Alphonso,

Hi! Very interesting information that you found:

http://annerowlingclinic.com/news/AVM-treatment-stroke-risk

Not something I had heard before. I do think you can over-analyse these things (and I’m very qualified to comment on over-analysis!!)

I do think you’ve got an excellent team in Sheffield, so rely on the information they’ve told you. The FoI information you got will be generic and not related to your specific risks. I’d suggest that the specific advice you’ve had from your doctor is to be heeded re your risk, rather than trying to analyse the risks from generic information.

I’m not 100% sure it is appropriate for you to publicly list information about the doctors, so I have asked some of the other moderators to review it. It may be OK. It may be we are not comfortable about the detail and remove it. We completely understand the sentiment … but we need to be careful. I think it is OK but feels a bit borderline.

Very best of luck with your procedure! I hope it goes well and you’re able to tell us how you feel, how you get on.

Very best wishes,

Richard

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Seenie from Moderator Support here.

SuperAgMan, I see your dilemma and I completely understand your concerns. Ben’s Friends takes its responsibilities towards members very seriously though, and we want to make sure that certain parts of your post won’t cause problems further down the road. Consequently, I have temporarily hidden the content in your post which concerns information which you received through FoI.

The Moderator Support Team and management will make a decision as soon as possible about whether we can allow detailed information of this type to appear online.

All the best to you at this very difficult time.

Seenie

Hi Richard,

Many thanks for the comments and feedback.

Firstly, I agree with you regarding comments of over analysis, I am naturally like that so it will come as no surprise that where my health is concerned I have done this perhaps to the Nth degree!

Secondly, I have to disagree with you about listing information publicly about doctors. The information I have supplied is available in the public domain from the NHS Choices website where patients are free to pull-up names and GMC registration number of any consultant and to make comparisons. Here is the link;

https://www.nhs.uk/Service-Search/Consultants/Indicators/Service/150/4307309

Thirdly, I have worked in the NHS for over 20 years and have made FOI resquests many times. All FOI requests are published on respective hospital and NHS Trusts websites so that the public can benefit from the data.

I hope this helps inform your decision about the comments I have published and data shared.

Kind regards
Alphonso

Richard, I agree with you, And have to add that the Sheffield team are the best radiology team in the UK, I know of a few people that have had to travel there for treatment.

Just to highlight we at AVMSurvivors only post positive reviews regarding Doctors for others to feel like they are in safer hands. It is in no way a doctor skill review, This site is all about positive feedback from members and advice, But we never give medical advice directly to our members, we share our own experiences and advise that each and every member consults with there local doctor on any medical query.

With regard to the formula, This has been around for a long time, When you have an AVM you could look up figures and do calculations, But ultimately no matter what the odds are you are taking a life threatening risk even for an Angiogram so it comes to a question for ourselves in that can we live with the risk and lifestyle changes needed to minimise the risk or do we wish to take a risk and get treatment for something based on our own mind set and symptoms.

I hope this helps and if you have any further queries regarding this community site please feel free to drop me a mail or message. Thanks and take care

Martin.

Hi Martin and Richard,

I totally agree with you that the Sheffield team are excellent.

I have just spent the last two hours undergoing the gamma knife procedure and am now back on the ward, fed and feeling really good apart from soreness in the temples and back of head where the frame was attached.

The whole team is very professional and the processes extremely slick. You are constantly been talked through each stage leaving you with Know doubt what is going to happen next.

I met up with my consultant Mr. Rowe and presented all the information Imhave shared with the forum. We went through my concerns and the research paper I shared. Mr. Rowe was excellent at putting it into context because some of the information was not specifically relevant to my case. I don’t think I was being negative in any way and was just expressing deep anxieties for the predicament I’m in. It takes an excellent, caring consultant to listen and counteract various points rather than showing dismissive arrogance which I certainly did not experience.

I know I am not out of the woods yet and there is a year or two of follow-up to ensure that my scars are healing and ultimately melting away. The decision process,for me to go ahead was a difficult one having spoken to 4 specialists, did my own research and elicit feedback from the forum.

The NHS Coldicott Guardian Council is all about protection patient confidentiality but also about appropriate information sharing to help the public make informed decisions about where they choose to go for their treatments. Unfortunately there is a postcode lottery effect that exists in healthcare and other areas which means that not all consultants and service delivery are equal. We all have a right to seek out the best service that we are prepared to travel to and use.

I will post up my progress over the coming months because reading other forum members’ has been insightful for me.

Regards
Alphonso

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There is a reason we don’t encourage this and from time to time out an out discourage it. It is virtually impossible to make “comparisons” Every doctor and every clinic has its own patient selection criteria. If you go to doctor “A” based on his experience (and that is what you are paying for) he recommends a course of treatment based on what he sees with an individual patient. Go doctor “B” is likely to come up with something entirely different based on exactly the same criteria/data. This doesn’t mean Doctor “A” is right or wrong. Same with Doctor “B” The “public information” does not EVER consider these differences and you have no way of knowing what those difference are. About the only thing we can discern from these lists is how much experience these guys have. Even that means little. A guy could have 20 years of bad experiece OR the guy could have 20 years of dealing with the most difficult cases, because he is highly skillful and doesn’t deal with “routine cases”

I know this can frustrating. I have got to tell you as community manager, I am VERY PROUD of how the Mods and my mod support team have handled this discussion. One of the most difficult things we deal with are “studies” They are often very interesting and thought provoking but seldom of any value especially to individual patients. Studies/articles even with Data are rarely anymore than a presentation of opinion/ideas. They are the main way docs/researchers “discuss” things and seek other opinions. One of the studies presented earlier in this thread and removed by our mod support team (they voted and everything) suggested in the Summary that non treatment was a good option. BUT when you go to the full study, hidden in the footnotes is the fact 31 of the 102 “conservative treatment group” didn’t complete the study because they passed away… Keep in mind all they were studying was a particular kind of stroke STROKE http://annerowlingclinic.com/news/AVM-treatment-stroke-risk didn’t say a word about blow outs or Ischemic Stroke .

The BEST doctors deal with the most difficult patient. Their numbers are often off. Statistics simply are not a good way to make decisions. The only stats that matter are YOURS

Out of the medical world FWIW, My Brother in law was the world champion poker player (he was on TV and everything.) He tried to teach me the game but told me that as a statistician I was hopeless. They only way to be sure of losing was to play by odds/formula and I couldn’t stop.

TJ, WUS (washed up statistician)

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Thanks so much for your detailed clarification which I agree with. I’ve read the more detailed research and my best friend who is an epidemiologist said pretty much the same thing as you.

The challenge you have for us sufferers when you discover timebombs in your head driving you into depression is that you need information which can be supporting and conflicting. When you have had to fight with a GP to get a referral they did not want to make you get even more paranoid.

This forum has been great for posting up information and it’s good moderation that helps to bring more objectivity at a time when many are going through the most life changing events in their lives.

Alphonso,

It’s great to hear you’re through the procedure and you got the support and approach you needed from your consultant. It’s also great that you agree with TJ!

I completely understand the drive to analyse, as I pretty much did the same as you (and to a great extent, continue to try to “analyse” my condition). I completely understand it as a coping strategy but it has its limitations and as I said earlier, you have to remember to differentiate more general statistics from the advice you get that is specific to you.

I’m really glad you’ve got through it and hope it all continues to take the right course.

The objective of this forum is peer support. I think that’s the main thing we were getting concerned about, not bordering onto some place where performance statistics for any organisation are published, as we want to keep this peer-to-peer, not have to invite organisations in to defend themselves. I don’t think your info was doing that sharply but it could become the thin end of the wedge.

Let us know how you get on at each stage but if things are not going 100%, avoid naming individuals or organisations!

Very best wishes,

Richard