Post Gamma Knife problems

Hi Guys, sorry for my absence, I had Gamma Knife in Sheffield in Februrary. But since then have been getting severe headaches. Trying to get seen by anyone is near impossible, I did have a scan to check for an adema. But the thing that is frustrating me to hell, is i’m being told I have migrane. For one I don’t believe them and two no matter what they give me nothing is taking away the pain. I now have even more trouble sleeping, as I can’t lay down properly and I am also losing the feeling in my left arm at times during the night. I am getting so frustated with doctors, all my follow up has been delayed or out on hold because of covid and I am fighting for every phone call of advice from doctors. Can anybody please offer any advice which may help.
Kind regards
Mick…

Crappy to hear,

I’m somewhat in the same boat - getting through to an MD just for a script is difficult

But, I don’t like to hear numbness as a symptom - it can be something fairly serious

Nothing helps the head aches? Meds?

How’s your blood pressure?

I have been having spikes in my blood pressure, but unfortunately not when fitted with a 24hr monitor.

I get em too - randomly, almost

I’ll be sitting at a perfect 12x/7x - next time I check, it’s mid 140’s/80’s

Mick,

Good to hear from you again. @JD12 is better to tell you about gamma knife than me but it definitely starts doing things at the six month mark and a bit of increased intracranial pressure is common. I think you’re saying you’ve had intracranial pressure checked (i.e. due to possible oedema).

I also assume you’re under the care of John Radcliffe in Oxford rather than Sheffield for any ongoing care. The one thought I’ve got if you’re not getting attention from JR is if you have any contact details for the team at Sheffield and see if they will agree with you that oedema could be an issue. I’m equally assuming that your GP is as naïve about all this as some of mine were, so not necessarily likely to help drive an appointment. Hence, if you can get any verbal support from Sheffield…

I’d also say that if it gets bad, go to A&E and tell them you think you might have increased intracranial pressure due to the gamma knife and you want the intracranial pressure checking out. Your GP should as a minimum do the shine-a-light-in-your-eyes test to see if there is any sign of intracranial hypertension. I think your pupils will react slowly if there is increased pressure. But if they can’t determine increased pressure, it is likely to be ascribed to migraine-like symptoms.

Hope at least one of these thoughts might help… :+1:t3:

Richard

Mick, nice to hear from you, wish it was under a little different circumstances. I find a lot of unexplained head pain is by default, migraines. You’re 9 months(ish) out from gamma, swelling is common, which results in the intracranial pressure and head aches. Not always but not uncommon at ll. I experienced some pain around the 6 month mark which slowly subsided. The other thing I experienced was sharp ice pick head aches, sudden onset, short lasting but certainly frightened me the first few times, these occurred fairly frequently and again subsided and disappeared. I did not need a course of steroids but many do. Relieving the swelling generates the desired results.

We are in complete lock down again in Manitoba, so I can only imagine the struggle i trying to get an appointment. If it was me, I would certainly explore the possibility of swelling. Sorry for not replying sooner but am away from home for a bit and access is a little sporadic. Take Care and hoping you can get some answers, John.

I agree. Mick, I think one of the things is to tell the doc “I think I might have some brain swelling going on” rather than “I’m having awful headaches” because it might just point them the right way.

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Thanks for the advice, I will be on at the doctors. Will keep you all posted, thanks for all the feedback…

Hi Mick. Sorry to bother you and to hear what you’re going through. I just wondered whether you were warned about these possible side effects before you had Gamma Knife? My own AVM is untreated and GK seems the only option for me. I haven’t yet agreed to it though as I’ve heard stories similar to yours before. I’m a JR patient too. Its makes me mad that so many things are passed off as migraine, although I understand what others here say.

Lulu

Hi Lulu, if i’m being totally honest with you, they warned of some possible early side effects of the GK. But not prolonged problems. Covid isn’t helping the situation, but getting doctors to understand AVM’s is a nightmare. I am under Mr Patel at JR who is ok, but this is only my opinion. Please don’t let this put you off as everyone is different and hopefully god willing, if you decide to have GK, chances are you’ll be fine.
Thanks for the message…
Mick

Hi Mickeboy,

I’m sorry to hear of your troubles. I also had gamma knife at Sheffield, 17 months ago. I did have headaches and terrible fatigue for the first few weeks which may have been frame related and even the trauma of the previous few months (inc a bleed). I have occasional ice pick pains in the area of my AVM but nothing like you have described.

The numbness is certainly a concern, or it (and the headaches) may be unrelated to the AVM. It may help you to know whether you have a high chance of adverse radiation effects (ARE). I have no medical training but here’s a couple of thoughts which may help narrow down the likelihood of involvement of your AVM in these symptoms.

  • does the numbness correlate to the area of your brain that was treated? For example, treatment of right parietal lobe may potentially cause issues on your left hand side.
  • did your surgeon tell you how likely it was for you to have issues following your Gamma Knife treatment? The odds of issues can be quite specific to the individual AVM, taking into account location and other factors. I think there is a scale they use to grade the risk/outcome, and it uses variables including prior bleed, volume of brain treated, marginal radiation dose etc etc. It might be helpful to know how your risk was assessed, just to narrow down the possibility that this is radiation related. Headache is always cited a risk of GK, but I would have thought the numbness would be very specific to your AVM’s location. The guys at Sheffield said I have risk of left hand vision/movement issues and headache (my AVM is right parietal/occipital). My neurosurgeon who oversees me said based on his assessment I had a 13% chance of ARE.

If you can eliminate that as a cause it may make you feel better, or point to a different cause. It’s good that you had a scan and have no odema.

All the best,
Jonny

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Hey there,

My gamma knife experience is somewhat similar to what you’re going through. I began to get bad headaches and they only worsened. As well as my edema, which spread very quick. My left side symptoms led to seizures, so please be careful and talk to someone about that. I wish I could give advice on how to deal with the headaches, sorry you have to go through all this.

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Hey Mickeboy, how are you getting on? Did you get in touch with Sheffield?
Best,
Jonny

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