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AVM Survivors Network

Gamma Knife Surgery Sheffield

The wait has been excruciating and filled with anxiety as most people on this forum who have been through it can testify too.

It is not just the waiting though there is the thought that the journey you are about to embark on might not give you the desired outcome. To each of us that have these little aliens in our heads and elsewhere this is an entirely personal decision balanced by the information given to us by our Doctors and Consultants whom we must trust.

I’m sure most of us have come away from a visit with our consultant with our heads spinning from percentages of this happening against percentages of that happening.

In the end, in my case anyway, it all filters down and distills into a decision!! No right or wrong decision, just a decision that feels right for me.

So.

Last Monday 16th March 2020 I went off to Sheffield for my long awaited appointment to have Gamma knife treatment for my right sided parietal lobe AVM.

Just to ramp up the pressure a bit though, life throws in a bit of curved ball, why not, as if having your brain blasted with Gamma Rays is not exciting enough!! Coronavirus Covid19.

As we travelled up to Sheffield the day before my first appointment I was prepared anytime for a phone call to say that my treatment would have to be postponed. Fortunately it never came. In fact the only phone call I had was one from a member of stereotactic team to confirm my appointment for the next day, as if I could forget.

The next day I went to meet two of the team who gave me run through of the procedure that would happen the next day. Treatment day. I was also given a pack of six steroid tablets and some Ranitidene pills which were to help mitigate the effect on the stomach that can sometimes happen when taking these steroids.

On Treatment day I was admitted to the neuro ward at 11.00am where I had to change into a hospital gown. A lovely little bare bum number which I’m sure most people will have come across in hospital.

After a short wait I was collected by two of the stereo team and taken to have my frame fitted.

This part was the only part of treatment day which could be called in any way traumatic.

The fitting of this frame has to be solid, it can not move at all as all of your treatment is referenced off of it. It is clipped in to all of the machinery that is going to be part of the treatment, MRI Angiogram and finally Gamma knife.

The frame is held in place by four pointed pin screws which screw through the skin into the skull.

A local anaesthetic is injected into the skin and this stings a bit. The screws are tightened in sequence and eventually finally tightened with what seems like a torque wrench which clicks when the screws are correctly tightened. None of this is as bad as it sounds!

After the frame fitting the first stop for me was the Angiogram. This was not as long or complex procedure as that I had before. I was told this was because from my previous images they knew exactly where to go. I had the usual contrast dye and images were taken of my little alien friend.

After the Angiogram I was given an MRI which again did not take as long as previous ones I have had elsewhere.

There then followed a period of about 90 minutes during which time I was able to have a rest and wait while a treatment plan was decided on.

I was then wheeled into the gamma knife suite where I was told how long my treatment would take, in my case 62 minutes.

The Gamma knife itself is the usual doughnut shaped instrument rather similar to an MRI scanner excepting there is more room in it and it is not as claustrophobic.

There the similarity ends as the machine is completely silent the only noise you can here is a low level beeping which is completely drowned out by the music you have selected to listen too while you are in it.

After my 62 minutes was up the frame was removed from my head and I was taken back to the neuro ward for a cup of tea and some food.

I have to say at this point that the friendliness and professionalism of the staff that accompanied me through my day of treatment was outstanding. I had the same two people who came to get me in the morning to start my treatment with me all day and they delivered me back again They were constantly observing me and making sure I was comfortable and always ready to answer any questions I had. So to Pat and Robin (favourite colour green not purple) I cannot thank you enough for your help and dedication.

After a not so restful night on the ward and my pin screw site and groin angio point being inspected I was discharged. I was told to take it easy for 48 hrs and keep an eye on my pin points and angio site.

At the time of writing this I am at home and it is now 48 hrs since I had the treatment.

It is far to soon to say anything except that I don’t have any side effects from the treatment at the moment. I hope this is the way that it stays until my two years are up and I go back for an MRI to find my little alien friend has been OBLITERATED!! and good riddance.

In writing this I hope to give some insight as to what happens on the day and take some of the mystery and scariness out of it. There is nothing to be frightened of.

Micko

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Outstanding Micko! Thanks so much for the update, and I imagine with all going on in our world you were worried. The clock has started, which is such a relief. My two years and a little now seems an eternity ago, it went fast. I was tome counting off the start and then just got on with living! Take Care, John.

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@Micko!

Great update! Really helpful for all those who will go through the same as you. It sounds like you had a good day overall – no less than I expected – but not too uncomfortable, which is great!

I have to say that Nottingham QMC let me have two gowns – one to go on with the gap at the back and then a second one to go on like a dressing gown and be taken off at the last minute, which is a rather civilised way to do it, I think.

Very best wishes for the next 2 years!

Richard

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Double-gowning is the way to go, isn’t it. Having been a cancer survivor for decades before the AVM was discovered (the hard way, but I’m fine now), I’ve seen a lot of variations. One of the worst was when they put a heavy EKG telemetry unit in the chest pocket of the only size gown they had on hand - an XXL. When I got up to use the bathroom my whole front side fell out. Also, if anyone hands you paper- don’t walk, run!

That was a really informative write up, thank you! I had cyberknife instead of gamma, so there was no frame screwed into my head. Instead they made a custom mesh mask that was screwed down to the table. A robot arm moved around “shooting” at my head from different directions.

Fantastic that you had such a smooth experience. It didn’t start right away, but I felt quite a bit a fatigue for awhile afterward. Nothing major, I just had to pace myself for a few weeks.

great report - I had exactly the same at Sheffield one year ago. I have to say the follow up is none existent is my ONLY complaint!

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Hi Micko, I hope you’re recovering well. I too have an AVM in the same place as you and I had 72minutes of radiation. Did they tell you it would take only 2 years to go? They told me up to 4 years but I’m praying it will be 2 as well.

Hi John. I know your AVM went in 2 years. Did the hospital tell you it would only take 2 years as well or did it go earlier than they predicted? Thanks. Gill.

Hi gill1.
They did say it would be at least 2 years so probably longer, we can but hope. I am due to have a visit in 6 months with the neuro team at Oxford so I hope I might know a bit more then. When I was discharged from Sheffield I was told that I would not have another MRI until 12 months was up and that would be done at Oxford.
Micko

Hi
elisabet_k
I wonder what the difference is between cyber knife and Gamma knife is?
By the way I have had the same tiredness and fatigue but it is improving.
Micko

All,

If you want to learn a bit more about stereotactic radiotherapy, there is an excellent article in our AVM 101 category:

Great to har from you Gill. My Dr. felt mine would be gone in two years due to its smaller size. John

My understanding is that the difference is how the radiation is “aimed”. For Gamma knife, you have a frame literally screwed to your head, and with the frame in place you have imaging done which then allows the radiologist to pinpoint the treatment areas without worrying that your head will be in a slightly different position.

For CyberKnife, they make a custom mesh mask which screws down around your head instead of into it. Obviously that’s a bit better from the patient perspective. During treatment, an integrated cat scan is used to adjust the aiming precisely.

I think which type is used depends generally on what is available in your area, and not that one “better” than the other.

For comparison, I had very old fashioned radiation therapy for cancer in the 1980s, what is known as “wide field” radiation over my entire chest and neck area. (And lower cerebellum, ahem.) It was literally a lump of radioactive cobalt in a single location overhead, and a plexiglass plate just over my body with custom-built lead blocks that cast shadow. For a month I had ink markings from my earlobes down that were used to align the shadows, a process that took 30 minutes or more every day. Every few days they would expose x-ray films on the treatment table to double check the alignment and make tiny changes in the markings on my body. The technology for stereotactic radiation and the fast imaging now is amazing. I spent days being measured with calipers and cat scans and then waiting for a supercomputer to calculate the exact shapes and thicknesses of those lead blocks back then.

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Hi Micko, thanks for your reply. I think the doctors are pretty accurate and they don’t like to get your hopes up so you should be free by 2 years, fingers crossed for you. My 2 years is nearly up now and my last scan was 80% gone so it can’t be long now I hope!! Gill

Hi John, thanks for your reply, the doctors were spot on with you then! Mine is only small too, 1cm, but it is very spread out rather than 1 lump if that makes sense! Gill.

I have had no contact since my gamma knife one year ago - no scans, nothing - has everyone else had back up support and scans to see how the gamma is working?

Hi @Ragdoll

It is normal to have a review after a gamma knife. I would ask your radiotherapy or neurosurgery team what plan they are following. If you’ve not got contact details for them, go to your GP. Your GP should have a discharge letter or something that indicates the plan.

Whether they plan to review you after a year or two years may depend but it would be good to know what the plan is, wouldn’t it?

Very best wishes,

Richard

Hi Richard. Thanks for your email. My consultant here in Bristol said 2 years - just that everyone else seems to have a 6 month or at least a year check to see how it’s going. I’m going to push them for a check up when we get out of lockdown!

I think we get the least cost options on the NHS, so if he or she wants to see you again at two years, I should think that will be fine. There is an argument that says you don’t want to be x-rayed any more than you need. However, there’s no harm in asking. If you get to two years with no follow-up, I’d definitely be asking.

Hi. Just had a follow up letter today from Sheffield asking for a follow up from the neurology team at Oxford at sixth monthly intervals and an MRI at two years which is different from what I have been told previously . Although Oxford may have a different Pathway/procedure in place for the aftercare. It seems strange that you haven’t heard a thing.

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