Follow-up MRI’#

I ruptured in Dec 2013. I had one angio six months after rupture. I was wondering if follow-up MRI’s would determine why I still suffer so many headaches since it has been 7 years after my rupture that was treated with coils and stent. Sometimes, but not too often, the headaches are really severe. I suffered a very severe one two nights ago and was really scared.

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Do you see your neurologist regularly? I would call him/her as soon as possible.

Hey Cathy,
An MRI may pick up any obvious cause shown on the images ie A collection of fluid or displacement of structures, but as to why you’re having on going headaches, this may not be shown on an MRI. I’ve had a few (6) neurosurgeries now, my last being in 2013 too. Each has been to ‘fix’ an issue, but each has had it’s own side effects and these have compounded upon each other. I have seen numerous dr’s and specialists of every colour and creed. I’ve tried every treatment that’s been recommended or suggested and none of them have been my answer.
I think the closest I ever came to an answer was from an ophthalmologist “You’ve had brain surgery… …What did you expect?” Well, I didn’t expect THIS. But if you have concerns, go get it checked out. Go and have a scan, but don’t go in with any great expectations of getting a definitive answer. It can be real soul destroying going into this things with expectations of obtaining answers only to be told there is no answer.

Personally, I have symptoms each and every day. The only thing that fluctuates is the pain location and intensity and I can never really tell what ‘today’ will bring. I just have to be ready to manage whatever arises. I have a few differing ‘Tools’ to assist in that management. Medications can help but have to be carefully managed (too many opiates and my insides don’t like it) For some people tricyclic antidepressants have shown to be beneficial, for some people they are not beneficial. In my BAD periods I need a dark silent room and a bed. My activity also needs to be carefully managed too. I know if I do too much today, I’ll pay for it in agony tomorrow.

I’m sorry to say it like this but each person needs to work out their own management tools. What can be a wonder drug or a wonder cure for one can be absolutely useless for another. This certainly is NOT a ‘one size fits all’ scenario for treatments. For example for some people Botox has shown some miraculous results. For me… …not so much. It really can be a case of ‘trial and error’ to be able to establish which ‘tools’ work best for you.

Hope it helps
Merl from the Moderator Support Team

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@Cathy1 I agree with @mhann see a neurologist. That’s what my neurosurgeon tells me as well. They also say that aneurysms don’t cause headaches. But it’s a bit amazing that all of us have them here. I wonder if the damage done because of the aneurysm is the culprit. It may also be a change in blood flow. I will ask the next time I see one of them.

I also would have severe headaches that resulted in another coiling…

All the best
Moltroub

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I don’t see a neurologist regularly actually. No one, including my GP doctor, has ever suggested that. He only renews my meds month after month. I will call and ask him to make an appointment for me.

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It’s odd that you mention an ophthalmologist. In addition to my “usual” headaches which can be debilitating at times, I have been getting them in an additional location in my head. A month ago I had SLT laser therapy because of recently diagnosed beginnings of glaucoma in my left eye. Since the SLT (selective laser therapy) when I try and sleep on my left side I get bad stabbing pains in my head. I can’t see the doctor who did the laser treatment until the end of March.

I appreciate your response. Thanks!

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Thanks Moltroub for responding. Another coiling? Those who don’t believe these headaches after ruptured annie should walk in our shoes! Seriously I wouldn’t wish that on anyone!

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Cathy1, Seenie here from ModSupport. Something else that works well for me is a message to the doctor (neurosurgeon in this case, I think) and a copy to your GP, something along the lines of “I don’t know whether I need an appointment, but here’s what’s happening, what do you think?”

Myself I have had the best luck with fax messages, but some docs have email too.

That way, you’re not on edge while the “machinery” produces an appointment for you (that can take a looooong time). And if it sounds urgent to the surgeon, s/he’ll take action. If it doesn’t sound urgent to them, you can relax a bit.

Let us know what happens!

Seenie from ModSupport (one of the ModSupport people on the team with Merl)

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Oh that’s great advice. I know that with covid here in Toronto (we are still in lockdown) my GP is only doing “phone call appointments”. I will contact a neurologist and cc my GP.

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I’m glad that was helpful, Cathy. Be careful though: this only works with doctors who know your case, you can’t just “cold message” them!

I’ve never had a doc react badly to my doing that: it’s a lot more efficient use of their time than having patients wait 3 months for an appointment for something that’s a “nothing”, or wait 3 months for something that they would have wanted to see immediately. And doing it in writing makes it easy: no garbled phone messages relayed by reception, no staff time wasted. Your note arrives, goes on the doc’s to-do pile, and doc can just write “get her in asap” or “not a problem” on it. Done. But doc has to know who you are.

I know about the difficulty in getting appointments, especially specialists, the long wait times and … yes … lockdown woes. I’m an Ontarian too, but I live a couple of hours north of you.

All the best, and let us know how that works for you!

Seenie

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Hmmmmm. Good point Seenie. My neurologist is at St Mike’s downtown here. I will post when I know something. Thanks again.

Hey Cathy,
Having both an ‘Eye’ issue and a ‘Head’ issue really can make things that much more difficult. Sometimes what can occur is that the 2 specialisations play off against each other. The eye dr says “I did my job, so it’s nothing I’ve done that’s causing symptoms. It must be your head” and the ‘head’ dr says “I did my job, so it’s nothing I’ve done that’s causing symptoms. It must be your eyes”. Then we’re left with even more questions and no answers at all. My favourite (NOT) line I was given was “It’s just that you have a low tolerance to pain” GGGRRrrrrr. I’d happily give them my pain for a day, just one single day, to see how they’d manage. What I have a low tolerance of is medicos who discredit patients. Sometimes getting some sort of consensus between 2 differing specialist, that can be a big issue. A good medical advocate can sometimes assist in getting answers (if there is an answer).

Another line I was given was ‘The brain itself has no pain receptors, it processes pain from other regions but It cannot feel pain itself, so it’s not actually your brain you are feeling’ and this maybe so but the meninges (the covering between the brain and the skull) does have pain receptors. Any changes in blood/fluid flow within the skull simply MUST have an effect. For me those effects have been long term. For some those effect can be minimal, but for others it can be catastrophic. Most days I’m somewhere in between.

Merl from the Modsupport Team

Hi Cathy, after my Brain-Aneurysm surgery off and on I suffered headaches. As years went by it got much better. I observe after all these years the headaches appear when I am in hot climates, but that about it. I suggest you see your Neurologist, just to rule out any problems. God bless.

Thanks Karen. I will see the ophthalmologist in a couple of weeks for my follow-up appt. and then speak to my GP for a referral to my original neurologist. I might need another MRI to rule out more annies. I can’t pinpoint the cause of all of my headaches. They come when I least expect them. One of my BIG issues is when my sister, my mother and I get together. We all talk too much (being of Italian descent!) and then after an hour or so I “hit my wall” and I have to leave their company. I really pay for it the rest of the day and into the next day. It even happens if we “visit” on Facetime.

Hi I don’t see a Neurologist. My GP works with the medication for seizures and headaches Topomax.
I also go to another Dr in an Orthopedic Group for pain management he does the Botox Injections which are painful but I’m headache free for 3-4 months.
I also see my Neurosurgeon every September. The week before I get a MRA. Then at my appointment we go over it to look for changes or any new Aneurysms.
Chances are high you will develop another Annie since you’ve already had one or more. Always stay in contact with your Neurosurgeon.

I had my aneurysm sept 2013. I was having headaches as well. My doctor prescribed Butalb/Acetamn/Caff tan 50-325. They were awesome at first you take 1 to 2 every 8 hours. Then as time passed. The headaches started again more often. Then he prescribed Ajovy. It’s an injection you take once a month. It has really help me with the headaches. Ask you doctor about these meds.

I’m with you!

Those headaches are no fun… I say they feel like an ice pick being driven into your brain. Then a second or two later it lifts and you wonder what that was all about… until it happens again…

Hi Cathy, I ruptured a year after you in November of 2014 and also live in Canada, just a long ways west of you. The neurosurgeon I had has continued follow up MRI’s on a yearly basis though, I do nothing in the way of contact with his office I just simply receive notice by mail when and where to go. The last one was in the Fall and they did find something new so I will be going to surgery for a stent and coils early next month. Anyways, it seems to me you should and could be getting some sort of follow up to yours as well.

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