Hi my story began 10 weeks ago . I was taken into hospital where I was diagnosed with meningitis , encaphalitis , herpes simplex and after a MRI was told I have a 5mm anurism . Now I know Im lucky to be alive but im still very scared and haven’t received any support I was just discharged after 2 weeks and I’ve heard nothing since . I still have headache and dizziness and feel completely overwhelmed by all that’s happened . I’ve no idea what to do next .
Hey Lynn,
I completely understand why you are very scared and overwhelmed, in fact I’d say it’s pretty damn normal. Some medicos can seem so disconnected and can have very little insight into the emotional impact a brain diagnosis can have on an individual. In saying that a 5mm annie is considered to be small. A large annie can be from 16-25mm and a giant is considered to be anything over 25mm.
There is a number of differing ways they can treat a small annie BUT (as I have found) some hospital neurosurgical doctors will not make individual surgical assessments, but do so as part of a team. So they get together and discuss individual patients and their treatment options. They do this for a few reasons, firstly, what are the options available, what are the possible complications. From here the team can make a possible treatment plan in consultation with differing hospital departments. Depending on where in the brain it is located and again it’s size will depend how they go about treating it and what sort of follow up treatments may be required. As we all know, the brain is a vital organ and a very sensitive one at that, so the last thing anyone wants is for a ‘butcher’ to be diving inside our skull and disturbing any other brain structures, because, let’s face it, doing so could be fatal or leave us with life long impacts. A minimally invasive option is optimal, if they can.
The best way to look at this, in my opinion anyway, is that they have found yours whilst it is still considered to be small. This gives you and them time in which to make a considered plan of action. That is a good thing. It also gives them time in which, if needed, to get supports put in place for any rehabilitation (if it’s needed) That too is a good thing. Personally I find it VERY disconcerting that they do not keep us informed. Often their belief is that if you are not informed you don’t worry about it, but our reality is FAR, FAR from this and the stress can be HUGE, MASSIVE, OVERWHELMING to say the least. They deal with this sort of thing every other day and can seem so disconnected its insulting, but if they allow their emotions to be involved, like we do, they can lose all perspective of the task of dealing with it.
My advice would be to stay in contact with you PCP, they may send you for further scans just to keep an eye on its size, if it’s slow forming, that’s a good thing and if they notice any great change, more action will be taken sooner.
Now, I am not saying “So don’t stress” because I know that’s an impossibility (It was for me, I was a mess) But just be aware of any changes. At first, every ache, twinge and sensation will make alarm bells ring, but I now look for a progression of symptoms. If things seem to be progressing, then act. I have acted on many false alarms, but IMO it’s better to be sure than have a major episode.
I hope that helps a bit and just know there are people here who completely understand what you are going through. Even if the dr’s seem nonchalant, come talk to us, we know from personal experience.
Merl from Moderator Support
Hi Lynnb,
I am a ruptured aneurym survivor. In my case, it was 8mm x 10mm aneurysm that ruptured. It depends on your insurance but start looking into research hospitals that perform a high number of aneurysm surgeries. Your hospital may not have the expertise with aneurym patients. However, research hospitals have a staff of NeuroSurgeons who will evaluate whether it is clipping vs endovascular procedures like coiling, pipeline, etc. In your case, you have two issues with the meningitis/ encephalitis and a discovery of aneurysm which is no fun. I hope that the hospital is helping you with meningitis/encephaliltis and your headaches. After it subsides, it will be easier to plan your strategy on the unruptured aneurysm. Just look at the discovery as a blessing in disguise that it was caught. Good luck to you.
Thank you for the replys . IM having a nightmare non of the 2 hospitals I stayed in seem to want to see me again I’ve had no follow up care and was told I would . I feel like im going to drop dead any minute and it’s really getting me down . One of the secretary are trying to sort something out but I feel let down . All I want is someone to explain what happens next . Surly I shouldn’t have just been forgotten about
Hi Lizzy, I can relate to what you’re saying, it’s very scary. I would recommend you see a neurosurgeon first, the hospital discharge docs might have a doctor they want you to see. In my case, when i was discharged the hospital scheduled me to see the neurosurgeon I saw at the hospital about a month later. If they didn’t then find a neurosurgeon. I am actually having an aneurysm removed this month, am being treated by both a neurologist and neurosurgeon. I had a ruptured aneurysm last year and follow up testing revealed 2 more small, unruptured ones. You will need to get emotional support too, it’s a very stressful experience.
One thing i want to add, do not expect healthcare providers to reach out to you, depending on the office, they might not. You have to be proactive and follow up on things yourself, not to mention doing research on your own on treatments and support. Most people won’t know how to help you so do a lot of reading, follow up on tests, doctors visits and meds. Doctors offices have dozens of patients, it’s very easy to fall through the cracks. ERs patch you up and release you, they never do follow ups. There will be times of great frustration though, make sure to look for good doctors, they will be more likely to make sure you’re being well cared for.
I have a 3mm annie, ( diagnosed after a Thunderclap headache) My sister blows it off and says it is nothing and the “internet” has told her that it is too small to fix. Well, she does not know the location or how I feel and how I feel is scared an not validated. I also, like you, feel completely overwhelmed as well. I am having an angio done on Tuesday to light my head…but like you said,where to go …