Good Morning. I’ve come here this morning to seek advice and also just get something off my chest.
I suffered a ruptured brain aneurysm in 2016 that was repaired via coiling. I recovered extremely well, but 6 months later an angiogram showed my aneurysm had grown even with the coiling - so I was scheduled for a craniotomy to get it clipped. Surgery went well, and I again recovered pretty quickly. So the beginning of my aneurysm story is as good as one could hope for - I’m only in my thirties which aided in my swift recovery.
However, after an angiogram confirmed a successful clipping- I sort of shut down as far as my follow up care is concerned. I’m sure many of you are familiar with how difficult it can be coordinating appointments with surgeons, radiologists, neurologists - and not to mention dealing with insurance coverage/referrals. I’ve let it all get to me big time.
I haven’t had an appointment with a Neurologist since my surgery - and its been 4 years now. I of course saw my surgeon for a few follow up appointments, but once I was recovered from surgery there was obviously no reason to see him again.
I have so much anxiety about this and I just keep letting it get worse and worse by ignoring it. I’m at the point now where I know have to kick my own butt and figure out how to get everything back on track - but its so difficult. I feel so embarrassed that I will have to figure out how to get a Nuerologist without a current referral. I feel anxious and embarrassed about having to explain everything I’ve said here to a doctor. I feel like an idiot for ignoring something that could be such a huge deal for my health. Won’t doctors think I’m crazy for this? I have a PCP who asked last year if I was “keeping up with my nuero stuff” and I kind of lied to her by shaking my head yes and moving on with the rest of the appointment because I wanted to avoid all of this. I know I probably have to admit this to her now which is embarrassing for me. I think I’m posting here in hopes someone can tell me they have gone through something similar. Or some words of encouragement that I don’t need to be embarrassed about my situation, but I need to get it handled. Perhaps someone with a successful recovery like mine can let me know what kind of appointments they still have related to their aneurysm after the first year.
I appreciate anyone taking the time to read this and I hope you are all well as can be.
Hey Julie,
In my opinion you have nothing to be embarrassed about, nothing at all.
We all deal with this in our own way. Some people can be coming hyper vigilant. With every ache every twinge they turn up at A&E in a state of panic. Some people go the other way and as they’re symptom free they fairly much forget about it all. The rest of us are somewhere in between.
Some people (non patients) have very little idea of the mental impact a neuro diagnosis can have, it can be enormous and the more you concentrate on it the BIGGER it gets. So switching off to it all can be a safety thing, a self preservation thing. ‘Avoidance’ is one way to look at it, ‘self preservation’ is another. We know it’s there, we just ‘try’ not to have it ‘front and centre’ of every waking thought and that’s how we ‘try’ to manage it. That is NEVER something to be embarrassed about. NEVER.
The other option is that we concentrate on it all so much that we are paralysed with the fear of the ‘what if’s’ ie ‘What if ‘x’ happens…?’ ‘what if ‘y’ happens…?’ and the mental torment of this can be a living hell.
Personally, I have been down the neurosurgical route a few times and I have been at both extremes, what I call the ‘Get on with life’ theory and the ‘What if’s…’ BUT which ever route you take you should NEVER be embarrassed about it and if things have been travelling OK, why would you need to see anybody. You’d completed the post surgery follow ups and that’s all that’s really required. I’m in Australia and here medical referrals often only last 12 months, so for any follow ups I need a new referral for anyway. I have symptoms everyday, some are what I now class as ‘Normal’ (as if any of it is normal) headaches, dizzy spells etc etc, they’re normal for me. BUT anything outside of MY normal can be concerning, if those symptoms progress, then, again ‘FOR ME’ it’s time to act. But otherwise I try to ‘Get on with life’.
I’ll say it again “In my opinion you have nothing to be embarrassed about, nothing at all.” If you call the neuros office they’re more likely to tell you need a new referral from your PCP anyway.
First of all, I’m so happy you have recovered so well, but Don’t be embarrassed! Everyone deal with things differently, and there is nothing wrong with how you’re dealing with it. I’m sure it can be very overwhelming, I know it’s a overwhelming for me.
What I recommend is writing things down.
Take it one step at a time. Breath, and Try and see if you can find a trust worthy friend or family member that can help you navigate through all of this, I find it better when you have a support system. But If you don’t, take it one step at a time, meet with your PCP, ask for referral, and go from there.
You got this, and I’m here for you ! if you lived in NY, I would be there for you (physically).
Good Morning! I am so happy you have recovered well!
I’ve had three coilings for one ruptured aneurysm. I did follow through with a Neurologist for several years and then asked him why I was seeing him twice a year as we really didn’t do anything the last year. He said he wondered the same thing so we fired each other lol. About 18 months later, I did develop some issues and my PCP referred me to a different Neurologist. That one put me on some highly addictive drug and when I went for my follow up, I found that I had yet another Neurologist and he is extremely good for me. He suggested CBT but we don’t have a therapist in our county that specializes in CBT nor in the county he works in.
If I had no Neurological issues you can sure bet the farm I wouldn’t see one just to simply be paying for nothing twice a year. Besides the wasted financial cost and my time, I figure that if I’m taking up appointment time it’s taking time away from someone who really needs to see the specialist.
I would bite the bullet and at your next physical, let your PCP know that no you don’t feel the need to have a Neurologist. She may have a difference of opinion. Just hear her out on why you need one. Do you remember if your Neurosurgeon said you need to continue with a Neurologist? When you did go to one, did they say you need to continue seeing them? Are you having any neurological symptoms now?
I would also encourage you to do some deep breathing exercises, make a list of why you would need or not need to see a neurologist, take a walk about and appreciate those things you see on your walk.
Keep in touch, we love to hear success stories!
Moltroub
Am sorry that you had to go backbto surgery my question forbyou howbdid you feel did you feel any differnt before going to surgery again? In other words how was your recovery those first 6 mos?
You had a ruptured aneurysm. You have nothing to be embarrassed about. I would suggest consulting your pcp and see about getting a referral thru her. She will not judge you, you have had brain surgery, a few things slipped thru the cracks during your recovery. That’s normal, to be expected. Breathe and move forward. You’re doing well!
Thanks for sharing. Don’t be embarrassed, I’m so glad that you are doing so well, but I’m quite sure you need to have a follow up to make sure all is well. You have a fear and anxiety. I believe we all do after what we’ve been through. Fear of the unknown is normal in your case. Just have your regular check ups. It’s best to be safe in our case. You got this. Stay positive and count your blessings.
You’re doing well!