New to the group - Need Support

Hello everyone, 38M here and I had an aneurysm incidentally discovered on 11/1/21 and had surgery on 12/1/21 with two stents (y) and five coils placed. Immediately after the surgery, I felt good, but when discharged I began to have severe anxiety. I have constant fears of what if it ruptures, or what if I have a stroke. Recently, my fears have been focused on potential effects of the high radiation exposure from the multiple CT scans, angiogram and the procedure. Am trying to think positive, but this is not an easy process.

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Hey Loveforall,
Welcome to Ben’s Friends.

I must say here, you’re still in the very early days of your recovery and recovery takes time. It takes time for the body to adjust and it takes time for the mind to adjust. How much time? In all honesty, nobody can say exactly, it takes as long as it takes. Some people bounce back, really well. For some it can take a bit longer and for some it can be ongoing seesaw of good days and bad days.

Well, you certainly have no argument from me on that one. The mental side of things can be a HUGE battle. Initially every twinge, every ache and I’m asking ‘Is this it…??’ But over time you learn which aches are just aches and which aches are an ‘Act Now’. And those aches are different for everybody. For some people a headache can be their first sign of a major issue. For me, I get BAD headaches every day. If I was to go to ‘Emergency’ every time I got a BAD headache, I might as well setup residence at emergency :grinning:

What I now look for is a progression of symptoms. As I say ‘a headache, that’s normal’. But if that headache progresses to visual distortions, that’s annoying, to tingling and numbness, that’s a bit more concerning. If it progresses to nausea, I’ve got a problem. If it progresses to vomitting, I need an ambulance, NOW.
These are my signs and not long after my initial surgery I went to the hospital somewhere between the visuals and the tingling stage. I’ll tell you I was scared as all hell, I was thinking the worst (which, by the way, is pretty normal), only for it all to settle somewhat and the hospital sent me home. But, then by the same accord I’ve had an incident where I ignored ‘odd’ symptoms for a long time, only to have the surgeon inform me I should have acted sooner.
You too will learn your signs, it just takes time.
BUT
If you ever a sudden, MASSIVE headache that hits you like a ton of bricks. Knocks you off your feet…
DON"T MESS AROUND, GET TO A HOSPITAL.

I’ve required a few neurosurgeries and the last few have REALLY knocked me badly. I’m in my late 40’s, I can no longer work and the whole mental side of it all has been extremely difficult to deal with. I decided I needed help and I contacted a psychologist/counsellor to help try and process it all. All of this can be a heavy, HEAVY load to carry. I had all of this stuff, floating around in my head, but I had no answers, no remedy, so the same questions kept going over and over and ov… I was winding myself into such a mess. I needed external help. My only wish is that I’d asked for help sooner, it could have saved countless sleepless nights of me going over and over. It would have made life for my poor wife much easier too.

Just know, you are not alone in all of this and we have many members here who have been ‘there’ too.
If you need to chat, don’t hesitate, drop us a line.

Merl from the Modsupport Team

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Therapy can help in so many ways as Merl has stated. Cognitive therapy is excellent for those of us with brain issues but it can be difficult for someone in a rural area. There are sites that provide Cog Therapists that we don’t have to travel to and can use phone or video contact. For me my rules to get to an Emergency Department were massive headache, stiff neck and nausea or vomiting. Had to be all of them. When the ED MD saw me, I would immediately have a CT scan to ensure I hadn’t ruptured again and then a shot or two.

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Hi @Loveforall and welcome to the group!

I think the things I want to offer you for thought are that most of us have been through exactly the same worries as you (or are still going through the same) so you’re not alone. Everyone finds their best way to cope and it probably varies from person to person as to how they manage but we can share some ideas and see which might help you.

In regard to the radiation exposure, this is a balancing thing: what you’ve done is you’ve balanced the risk of losing your life or seriously impacting your health with an aneurysm rupture against the risk of complications from the radiation exposure. If you break a leg, you know you need to spend some time on the X-ray table to get a good look at the break and make sure there’s nothing untoward going on. Same here. It’s important to spend time having the scans and having the endovascular surgery to de-risk your aneurysm.

As @Moltroub says, the MRIs don’t use ionising radiation, so there’s no risk considered from that kind of examination.

I’d encourage you that one session in the x-ray suite doesn’t seem to do people serious harm. If you’ve been in for a long time, the main thing that happens is that your hair may fall out temporarily. I know a handful of people for whom this has happened and they are all ok today.

What has the doctor told you about your treatment? Did she or he say “Go back to normal life!” or is there any indication that they want to keep an eye on progress for some time? I have a different condition than you but the treatment is similar and it is normal for my case to have one review post operation. After that review my doc said “Resume life as normal”. It’s not wholly easy to do so, is much easier to listen a bit too much to your body and worry about feelings or noises but honestly it’s best to not over-analyse yourself but relax back into normal life.

Sending you lots of love and encouragement!

Richard

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Thank you all for the responses. The Dr said he suspects everything to be fine, need to do a 6 mo angiogram to see if it needs more coils. I have just been a tough spot when I was diagnosed with it in November, then treated in December. My fears and anxiety have been so high and I am working to simply enjoy the moment and celebrate life as it’s here. This whole situation has given me a new perspective, however, my thoughts seem to get me spiraling.

Feels like since faced with this, my emotions had really came on. I certainly feel like that I’ve taken things for granted before this.

I hope to be able to connect with everyone on here to be able to help each other in some way.

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I have to agree with DickD,

And if you learn how to do this can you please tell me how :grinning: :grinning: :grinning:
Post surgery I had all of this spare time. I couldn’t do much, so all I had was time to analyse, analyse and analyse some more-yuck, yuck, yuck…

I had to keep my mind occupied doing something, anything… it didn’t matter what, just so long as I didn’t have time to sit and think too much. My mind can take me down some awful black holes sometimes, of all the worst case scenarios being played out and that’s a horrible pit to fall into.

Ohhh, and many of us do. For many years I taught people with disabilities and thought I knew all about it. Well, didn’t I get a HUGE education. What I knew was the theory. The practical of actually living with a disability, far more shocking. It used to be that at the end of the day I could wind down, switch off to it all, but living it, there is no ‘switching off’ because it’s front and centre 24/7. For me, it’s been a case of trying to learn how best to manage ‘Today’.

Merl from the Modsupport Team

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@Loveforall I think you’ve hit the nail on the head with aneurysms and all things brain related which tells us we need to enjoy the moment and the little things that come our way. It’s a “Stop and smell the roses” time. For many people, we tend to get into a bustling life and forget to see the importance of the small things. However, once we rupture, have an aneurysm discovered, or any of the myriad of other things that can happen in or to our brain, all those things we once took for granted are suddenly noticed and appreciated.

It took four procedures for my neurosurgeon to finally say she was “confident” that she had my little bugger under control. It was a very happy day. Because compaction of coils is a real thing, follow what your doc has told you. I’m always breaking my docs rules in picking up too much weight, etc. I’m still learning to ask for help in that department. Try not to be like me, follow what your surgeon has told you!

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Hi Jon,

Trust the process. What I learned with regard to stents and coils is that they are monitored. Trust that the doctors found it and intervened appropriately. Quite a few famous people have had this and lived on. Our President has had two clips!

I hear you about the radiation. Today I had to have a chest x-ray for a different matter. It bothers me to keep being exposed to radiation. Antioxidants! Load up. They have done studies on how it reduces the absorption of radiation and helps repair cells. Today I took a cocktail of Vit C and E and Alpha Lipoic Acid. I will throw in a NAC and some carrots for beta carotene.

You are still alive and that is what is important! Be grateful!

Best wishes

Hi Loveforall: I agree with all the good info you already rec’d here. Yes of course experiencing a Brain Aneurysm is scary stuff, but are a survivor and now beginning the healing road. Like all of us have done, its so hard at first, you question every ache and pain. I was told to take it slow and let your brain begin to heal and can. Also know if you had stents placed you should have been given a card with date of implant, location, device lot number, name of Physician and his phone number. When I have any scans, I give these cards to the tech and the settings on the machines are adjusted to my devices: mine is 3.0Tesla field strength. After 6 years my hospital has my info on record, but I always tell them I have Brain Stents.
I hope for that healing feeling in the future, but i do remember how scary everyday life is at first. Ask questions, tell your Dr. your concerns and get any and all help you may need.

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I want to pick up on something Starbirder comments on

I have a shunt in my head. For years I’ve been going to the same local radiologist to obtain my scans and initially I was telling them of the ‘appliance’. ‘Yes, yes. We have that listed…’, so I stopped telling them. My next scan was abdominal. They put me in the machine, it starts spinning, then suddenly it stops and I’m pulled out of the scanner. The techy comes in quizzing me on ‘any implants’. I told him it was all on file, but he was none too pleased. So, now, I tell them all. Yes, it is on file, but that doesn’t mean they’ve read the file.

Merl from the Modsupport Team

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OMG Merl, I had been told, forget who, without the proper machine settings, your device could move with too strong a setting? Thats really SCARY!!! I even tell them of my small “marker” in my breast, it is an implant.

Yes, it was a bit scary.
With the last surgery they changed the valve in the shunt, it’s now a magnetic valve. Initially, I was told I could never have a MRI again. Around 3 months ago I went for another scan and was told it was MRI, when I voiced my concerns I was told they only needed to have a “Magic Wand” available to reset the valve settings. But during the whole process I was a ball of stress. We put our lives in their hands every time we do these things.

Merl from the Modsupport Team

@starbirder and Merl @ModSupport Thanks for the reminders! I always tell the tech about the pins and screws in my back and the coils in my brain, they always ask. I recall a big confusing argument I had with a tech as I didn’t have a card for coils and he insisted I did. Now that I carry a card for my stent, I forget I have one, yikes! I am going to have to figure out a way to remember. BH doesn’t come back with me when they do their questions…

Should I be concerned about my 2 CTAs after my procedure, from excess radiation? I keep beating myself up.

I know a bunch of people who’ve been in the x-ray suite for looong hours, to the extent that they had hair loss. If you’ve not had any hair loss from the procedure, there are definitely those in a worse situation who have regained their hair fine.

I don’t think it’s a choice you’ve really got. So not something to worry about the past.

What I’d say is that if you have further scans, it may be worth starting with an MRI (so long as that will be helpful to discover whatever you’re looking for) as it doesn’t use ionising radiation, so is “free” of the risks associated with x-rays and computerised tomography. Sometimes, however, the more invasive images are necessary, to see the detail.

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I know time passes, going to be 7yrs in June since having Metal installed in my Brain!! But I still remember the Sudden Horrific Eye/Head Pain+, etc symptoms. Now I carry cards on all the metals along with my Medicine List in a small plastic fold out, that has my Donate Organs, etc info. I also stick in the Vaccines+Booster dates/type.

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Geesh!! That"s so scary, I know they change the MRI settings before I come in and magnet not as strong, because I’m in the tunnel 30-60mins…ugh. Some hospitals have an “Open MRI” machine, but not here in NH.

I knew we were close…9 years for me this upcoming Nov. I quite carrying a purse when a cockroach climbed in at a client’s house and I saw it when I pulled in our driveway. I may have stripped down right there and then, I don’t remember. I found a small wallet to carry that fit in my front pocket and have never looked back. I still remember the sudden pain in my head and neck, wobbly legs and dropping my Japanese saw, that’s a pain we will probably always remember and it makes the pain scale difficult so I always tell the one asking I ruptured and that will remain a 10, everything else is based on that one single moment it seems. My DL has the red heart on it to indicate I’m an organ donor. The card for the stent is tucked in with my DL, insurance card and funny enough, my Neurosurgeon’s business card as my procedures were done about an hours drive away. The vaccine/booster card is too big for my wallet. I took a picture of it, but I’ve got to figure a better way.

I believe two CTAs are fine, I really do. Here’s an article from the FDA What are the Radiation Risks from CT? | FDA.

I do agree with @DickD to ask for an MRI/MRA if you need another image. Just explain your concerns to the physician ordering the image. I did learn awhile back that a Radiologist has to be specifically trained to read MRI/A’s and sometimes there isn’t one available. Then there is the hospital policy as well as what insurance will pay. CTs are cheaper is what one Radiologist told me.