Brain Aneurysm Support Community

They Won’t Do An Angiogram

#1

So, I went to see a really highly rated vascular neurologist last Wednesday. My brain MRA scan came back clear and has now been read by two radiologists on the NHS and a private senior Neuroradiologist. Because it’s been evaluated so much and there are no abnormalities, they won’t do a cerebral angiogram because they said they don’t need to. But I can’t stop worrying that this pain behind my right eye and in my right temple is being caused by a smaller brain aneurysm that’s been missed. They said the images were of good quality but still. They have all said that angiograms are used to look more closely if any abnormality has been seen. They are now sending me for an MRI of the orbits and an MRV scan. I wanted an angiogram but they said because of the risks and how much they don’t think it’s a brain aneurysm because of the clear MRA scan I can’t convince them. I just constantly feel terrified and like I’m going to die and I can’t take it anymore it’s making me so depressed. I’ve had this stabbing pain behind my right eye for five months now and I’m still the only one who thinks it’s a brain aneurysm, no matter how many GP’s, Neurologists or radiologists I speak to. :frowning:

0 Likes

#2

For me, the MRI (with contrast dyes) revealed the aneurysm and the angiogram gave the doctors more detail. At least, they are following up with an MRI and an MRV scan. Hopefully, those tests will reveal what the problem is… and that you don’t have an aneurysm after all. I know from experience how worrisome this can be. Ida

1 Like

#3

I think it’s a good thing that you’re having the tests that are scheduled- it shows that they are looking to find what the problem may be and not just dropping it all together. If something shows up on there, they can still do an angiogram-but trust me, you don’t want to have one of those unless you really need to.

4 Likes

#4

Did you have a bad experience with an angiogram? My wife had them for several years without any complications. The last time, seven years after the rupture was fixed, she had an MRA and doesn’t need the angiogram anymore. Everything was good.

1 Like

#5

Hey friend! I’m really with Patty6 on angiograms. I have only had one negative experience with all my angiograms, when one of my surgeon’s students didn’t put enough pressure on the plug. I kept apologizing to another doctor for urinating on myself, I had a catheter roflol. My little bit of a surgeon grabbed that tall man and threw him about two feet, did a handstand on the plug and bleeding stopped. But there are so many risks to having an angiogram that if not specifically needed, I wouldn’t want one. I actually have had so many, I can recite about 90% of them. The risks start with the anesthesia to the dye to the brain catheter, all the arteries bends and turns, etc.

1 Like

#6

Just sharing our experience. Maybe who does it makes a difference.

1 Like

#7

Angiograms are safe but it is still administered by a NeuroSurgeon or NeuroRadialogist. And I definately felt it after the next few days. Folks on this site are either caregivers or survivors. We share our experiences but we don’t have medical backgrounds. U need to trust your physicians but it does not mean that u cannot get a second opinion especially from research hospitals that specializes in aneurysms and AVMs. The other thing to consider are insurance costs. Without approval, the cost of my angiogram was 90K. With my insurance, the negotiated price was like 20K with my responsibility coming out to around 2K. I had to get 2 angiograms after my coiling after an emergency surgery to repair a ruptured VA/PICA aneurysm. In this case, it is needed to see the integrity of the coiling which a regular MRI does not have the resolution. Good Luck. I know how difficult that it must be for u especially with eye pain. Wishing u the best.

2 Likes

#8

My experience is very similar. I have the same pain on my right temple and shooting behind my eyes. I even went to the ER because I thought the pain meant something. My MRAs always come back clear. My neurologist assured me that it is migraine related and may be due to damages vessels in my brain from my rupture. I also get the sharp pain down the middle of my head but that too is because I have nerve damage. I’m not a fan of the angiograms because I suffered a stroke from one that left me paralyzed on my right side. Had to do rehab. So now my neurosurgeon has me going to do annual MRAs and if anything looks strange only then will they do the angiogram. I’m okay with that. But as for the pain, we’ve been managing it with medication that I take daily. It helps a great deal. Doesn’t take it away but at least I can function. As long as your vision isn’t affected you may be okay. If your vision gets blurry, you will need to get checked out immediately because it may be pressure on your optic nerve. Wishing you the best!

1 Like

#9

What about a CT?
I have similar symptoms as you, mostly left sided facial numbness, tingling, weakness…but I’ve definitely had the headaches behind my eye and temple. I had clipping sx 3 years ago (2 clips) but I wanted to know why this facial weirdness has come back and is now permanent. I had an MRI but My neurologist didn’t know so I spoke with my surgeon who said the MRI is clean but ordered a CT because the clips can sometimes obscure things.
Bingo! They found a new aneurysm…last week :face_with_head_bandage:
But the facial crap may not even be connected to the aneurysm so it’s still a mystery…maybe.
Can they do a CT with and w/o contrast? Much less invasive than angio, obviously.
Keep us updated and good luck! :+1:t3:

1 Like

#10

Hi there, thank you for your reply, I’m so sorry that they found another one! When you had the MRI, was it an MRI or an MRA? I have asked about them doing a CTA but they are reluctant as they don’t think it’s a brain aneurysm because of the clear MRA scan. I’m trying to work out if the MRA scan can be trusted or not.

0 Likes

#11

Hello, thank you for your reply. It’s terrible to hear what happened during your angiogram! Maybe that is why they won’t do one. I just want to be extra sure and it’s hard to trust an MRA scan, I don’t know if it’s good enough. So I assume that the pain you’ve been getting isn’t caused by a brain aneurysm then? Because your MRA’s are clear? What medication are you using to manage the pain? Mine is a shooting, stabbing pain behind my right eye. Although I have had to pain and pressure for five months now, I have never had any blurring vision, double vision etc. However, this started one night and has just stayed! That’s what I find so scary and makes me think it’s a brain aneurysm, because it’s constant.

0 Likes

#12

Thank you for your reply, unfortunately they have completely refused an angiogram because I had a normal MRA scan. I had some second opinions on the scan images itself, the wait for the NHS to see a neurologist was 31 weeks so I had to pay to go private. I have suggested a CTA scan too to be sure but they don’t want to do this either because of radiation.

0 Likes

#13

I didn’t realise that an angiogram was so full of risk. My concern is that if they don’t do the angiogram that they will miss a small brain aneurysm. I don’t know how reliable the MRA and CTA scans are because I read people on here where they found more brain aneurysms during an angiogram!

0 Likes

#14

My aneurysm is the middle of my brain and is coiled. I experience different kinds of headaches at different times so I kept a journal for my neurologist. My team has been great with identifying the root cause and treating them. He referred me to a sleep doctor who diagnosed me with sleep apnea. That stopped the headache that I woke up with everyday. There’s really nothing they can do about the shorting pain that I have I I gotta from the top of my head to the base. That’s due to nerve damage from the rupture. The right temple is the most persistent. They said there are three types of meds that are used. I don’t k ow the categories (I forget the terms that they use) but I started with one type. The exact prescription was for topiramate. This worked for the pain and took it away completely but I began experiencing g a shortness of breath so we discontinued it. All three of my children are on this because they all went for MRIs after my rupture to make sure they were clear (we all have had headaches all our lives which was a concern). They have all been diagnosed with headache/migraine disorder. The end that I’m on now is propanol. It’s a blood pressure medicine. They’ve increased the dose twice and I still have some room for an increase if necessary but for now, the 160 mg/day works. I still have the pain but it’s manageable. I suggest going to a neurologist that also specializes in migraines and headaches. My neurosurgeon recommended this.

0 Likes

#15

I think it’s not only who is doing it, but who is assisting and the patient specifics. I have had over a dozen in the last five years. I trust my surgeon completely. But though I undergo them every time, I still get the speech from the anesthesiologist, still get the speech from the Dr’s assistant a couple of times - the day they tell me I have to have another angiogram and the day of the procedure. Most of the risks are very slight, but they are still risks. I get premedicated because we know I’m allergic to the dye. I also don’t react well to Prednisone, but it’s better than going anaphylactic. We know that my arteries are clear so I don’t have to worry about a dislodgment of plaque which could lead to an ischemic stroke. We know that the anesthesia sets me back by months. My last angiogram was not done with anesthesia other than a local and I experienced very little set back. I will continue to have them as needed.

0 Likes

#16

Jenn33 is from the UK. The NHS is National Health Services. From my understanding, they don’t have insurance like ours. One time the admitting person told us that the angiogram would cost $100,000 but she could save us $40,000 if we paid that day. Thankfully I had insurance. On the positive note, one angiogram met my out of pocket for the year! I have not had an angiogram since I was accepted on Medicare.

0 Likes

#17

Hi if it helps my aneurysm was found from a normal MRI. They only did a cathetar angiogram to look in more detail of the surrounding arteries. However I did have a flickering like when you are tired in my right eye and when they did the angiogram they said the aneurysm was right up against my optic nerve. I didnt have any symptoms prior to this. Mine wS an incidental find.

0 Likes

#18

I had similar eye pain and temple pain and pain in randam areas on my head. Of course I was quite concerned. During follow-up from my 2014 coiling procedure, the neurosurgeon indicated there was nothing visible that would cause these ‘pains’ & I even went to see an eye doctor to see if there was anything optical related. Nothing was found. With the 6 month angiogram & the yearly MRA scans nothing has been found. After a while the pains were less & less & now I do not experience them at all. Can’t recall how long after coiling it lasted, maybe a year but it has been many more years without any pains at all!! Just wanted you to know that someone else has experienced similar pains. For me they were ‘phantom’ pains I guess.
I wish you well.

0 Likes

#19

It was an MRI first…a couple months ago. I’ve never had an MRA and I’m not sure what the difference is honestly.

I had never known a CT scan was an option or that it could show things that the MRI didn’t. But I think it was only because clips could obstruct something in the MRI.

I would definitely push for the CT scan before pushing for the angiogram. It’s just such an invasive procedure.

I have mine scheduled for May 7 and need to take two days off work.

I wasn’t the least bit scared when I found out about the first aneurysm or for the surgery. But now I am. And it’s all because of this weirdness on the side of my face. So I know exactly how you feel. But they may not be connected at all. In fact they usually say that any nerve issues could simply be the result of the first surgery.

But if in fact the aneurysm is causing the pain or numbness it could be just because it’s pushing on a nerve but that doesn’t mean it will definitely rupture either.

The brain and the nervous system can be an out right mystery.

Take it one step at a time. Ask for the CT scan and if they decline or don’t advise it… Go to a different doctor!

Where are you located?

0 Likes

#20

Honey, you need to go to a good eye specialist. Please stop worrying. Worrying makes you feel worse.

1 Like