My cerebral angiogram ordered by Dr. Hepworth is finally almost here! Friday first thing in the morning at 7:30 am (I hope.) I’m so ready to get it over with. It’s been over two months since I was referred for it and I have had way way too much time to think about it and google and worry.
Yesterday I went for the pre opp appointment and met with a nurse practitioner from the doctors office. That is when she told me for the first time that 1) there will be to access points, wrist and groin (the doctor told me wrist or groin at the consult) and 2) I am not allowed to be sedated for the first part in order to get an accurate pressure reading. The beginning, lying in an OR while they do things to my body, is the part that terrifies me. I don’t want to be awake and if I have to be awake I don’t want to be aware of that. had a complete meltdown, cried, told them how anxious I was, and that I wasn’t sure I could stay calm and hold still if I have absolutely no sedation. The NP said she would check and see if I can take my anxiety medication prior to the appointment (they already told me I couldn’t.) After I left she talked to the doctor, called me back and said I CAN have sedation for the whole thing and they can still measure the pressure. Not sure if she was just mistaken or if this is an accommodation for me. I’ll still be awake but will be on versed and fentanyl. Also said after I sign the consent forms, before the procedure, they can give me something for anxiety if I’m not doing well. I think I can live with two access points and having dye shot into my brain and lying flat for three hours after if I am sedated for the bulk of it. All that to say… advocating for myself, even as the emotional mess I was, was worth it and I’m proud of myself. I tend to space off, stare at the wall and disassociate at doctors appointments so I’m glad I was open about my feelings this time. I have never had any kind of surgery or medical procedure in my life. The worst thing I’ve had is my wisdom teeth removed, and I was not even awake for that.
Today and tomorrow I am trying to keep myself busy and avoid obsessing over what is to come. I’m very nervous for the results as well as the procedure. I just hope this brings me closer to a diagnosis. My Covid test was negative and I am not pregnant so it’s on for Friday. Now I have to use this nasty chemical soap for the next three days and drink some Gatorade type drink the night before. Insomnia has been off the charts this month but thankfully my pain and symptoms have still been mostly been kept at bay by the plavix.
Just venting and needing to get some of that out. Thank you all for the support thus far. Also if anyone has any reassuring things to say about this procedure that would help me a lot! Will update after the angiogram!
Great job advocating for yourself! I had a heart cath as a teen, not exactly what you’re prepping for but similar procedure. You got this! Also not sure if it will be the same for you, but after my procedure they would not allow me to cross my legs to avoid opening the wound.
YOU’LL DO GREAT!! I’m glad you get to take your anxiety meds pre-op. That will make a huge difference for you. Just think of it as a full day of rest (I’d sure like a day to just lie around & sleep at this point! ).
I’ll be praying for the result to be clear & accurately diagnostic so you can move forward swiftly w/ treatment.
Pleased that you were able to explain how difficult this will be for you & that they’re prepared & will help you through it. I hope it goes well & shows what it needs to, will pray for that & that you feel peace beforehand. Let us know how it goes!
Thank you all! @anharris, Yes same, I have to lay flat with my leg straight for three hours. This didn’t worry me too much except that I asked the NP about 30 questions on how I will pee during that time I have a nervous bladder! The answer basically is they will let me pee while lying flat on a bed pan. But I think I’d rather have that than a catheter though, lol. Hopefully I’ll just sleep!
I’m all done and at home resting now. Overall the procedure went well, the sedation helped loads, and it wasn’t as bad as I imagined (is it ever?) bits and pieces of it are fuzzy but I was awake and aware the whole time. It all started right on time which was a relief and everyone was caring and wonderful. They even let me listen to Grateful Dead during the procedure! Going to share a bit about it in case it helps someone else to know what to expect.
It was really weird. I didn’t even feel when they went into the veins, amazingly! Just weird sensations in my head, particularly when the doctor measured pressure. There were some shooting pains and it felt like something was crawling around in there. It was brief and when I said ow they upped my medicine. The dye felt briefly hot and like hot liquid in my throat. At the end my doctor put a small closure plug thing in my groin vein, which was awesome because it reduced my bed rest afterward to just two hours! An inflatable cuff was put on my wrist and that probably hurt the worst, just the pressure on that tender spot. My wrist is the most sore now. With prep and cleanup, procedure and everything it took about two hours. I did have to pee so bad after and then had to pee lying flat, that part was hard and distressing… I had to watch videos of water running to concentrate and be able to but I finally did!
As for the results, i have very slight narrowing of my transverse sinuses but my pressures were not high, only at a 3 or so. My doctor said 1 is normal and 10-20 would require treatment or action. He thinks that because the blood thinners helped so much this may have been the cause of my pain, so he recommended I stay on the plavix.
The weird part that is not too shocking but somewhat unexpected… I have a very small 1.4 mm aneurysm! The doctor doesn’t think this is causing my symptoms, but I need to monitor it. Doctor said much less than 1 percent chance it will cause me problems it’s so small. I will have an MRA in six months to check that it hasn’t gotten bigger. If it’s worrying me a lot or grows in size he will do a diversion stent (I think thats what he called it) to shrink it. That would be done same way the procedure today was but implant a device and I’d be asleep. I haven’t fully processed this but I guess I just feel like probably a lot of people have aneurysms and things they don’t know about because they haven’t needed to investigate. The word aneurysm is scary but the doctor reassured me and I’m feeling ok about that.
I don’t know what this means for my potential eagle syndrome diagnosis or if I have eagle syndrome, but I’m not writing it off yet as I have to see Dr. Hepworth first. That’s not until Nov 5. He will go over the pictures and talk to Dr. Kaminsky. I do agree with Dr. K that if the plavix is working this well and I don’t have dangerously high pressures, it’s fine to just continue on this route if/until things get worse. I don’t really see the need for surgery just yet or know if my styloid is the source of pain, but there was no compression there. Maybe Dr. H will disagree. My head was in neutral position the whole time. But I’m very glad that it’s over, that I have some answers and that I’m feeling better due to the plavix. I know nerve medications are recommended often here but it’s amazing how much the blood thinner has helped me so it might be something worth asking about for those with vascular Eagles.
If anyone else is scared for this procedure like I was, I just want to be reassuring that it’s not all that bad. The sedation kept me comfortable and the scariest part was getting prepped and the anticipation. I would totally do it again if needed. Thanks everyone for the support and for reading this if you got this far.
I’m so glad this hurdle is behind you & also for the good results. It’s also great that Plavix is helping you so profoundly. I totally agree, put off surgery until you really feel you need it, unless Dr. Hepworth advises otherwise.
Glad that you’re through this & that it wasn’t as bad as you thought…good that they’re going to keep an eye on the aneurysm & have found that out before it causes any problems.
Very helpful to explain about the procedure to help others
Thank you everyone! I am three days out and still quite sore and bruised. It’s worse than I was expecting because it looks like just a tiny knick in my wrist and leg near my crotch. The leg hurts worse. Overall not bad and manageable with Tylenol. will update after I see Dr H in a month.
They caught a nerve when my husband had a heart ablation through the groin- his was achy for quite a few days. Could be that for you…glad that it’s manageable with Tylenol.
Thank you Natty! It has relieved almost all of my symptoms. My headaches are gone, my neck and shoulder pain is gone, stuck in throat feeling gone. I sometimes do get a random headache and/or pain here or there, and sometimes will feel dizzy/pulsatile tinnitus when exercising. That being said the angio did not find that my jugular was compressed at the location of the styloid Could be because it is dependent on my head position or could be because it is not the cause. The neuroradiologist could not say what the cause was but he guessed maybe my slightly narrow transverse sinuses (Brain veins) weren’t flowing properly without the blood thinner. I’m hoping my head and neck surgeon Dr Hepworth can shed more light on what is going on. I just know the improvement on the blood thinner has been like night and day… I took it the first morning and by 1 pm my pain was almost gone. I had a slight flare up for a few days when I was at very high altitude, but otherwise it has been easily managed and intermittent. No real side effects on the blood thinner either aside from, well, bleeding a bit more when I cut myself and I’m a bit easier to bruise.
I had cranial angiogram thru groin. You will lay still, as they relax you, and position you on table so there is no chance of movement unless they want it. The procedure was not as bad as I envisioned. Plenty of staff around me at every single minute and with me after procedure while I was required to lay completely flat. I was never left alone, nurses were great. Worst part was nasty bruise on my groin area that lasted two months and was a little uncomfortable. Relax, it will be ok.
Thanks @eastmas1 mine was last Friday. I also have a bruise on my groin and am sore on my wrist (they went in both groin and wrist for me) but that’s about it.
Well my pain on my right side has been back in full force since Sunday. Not sure what triggered it as I’m still on the blood thinner. I did dislodge some tonsil stones in my right side tonsil and it seemed to start up a few days after that; also went to the dentist maybe a week before it started so that has me wondering as well. My pain in March got really bad after a routine dentist visit. My tonsil on the right side has been enlarged for years for seemingly no reason. I’ve been on multiple antibiotics over past six months and none did anything to help. Last time the pain came back was in August after spending a few nights at high altitude; it eventually settled down again a few days after going to lower altitude. I was hoping this might just be another short episode but it has been almost a week now. Feeling hopeless and scared, as I was really feeling good and thinking I might be able to avoid surgery. I already have an appointment Nov 5 with Dr Hepworth to discuss the angiogram so I will obviously tell him what has been going on. Not sure what it all means! I just wish so badly I could know what is going on in there…
I’m so sorry for your renewed symptoms. It’s not surprising that dental work, even a tooth cleaning, might stir up symptoms. The trigeminal nerve innervates the gums (lower ones especially but some in the upper as well) so any work done in the mouth that disturbs the gums can trigger that nerve to fire & cause problems. Like you, I would have expected it to settle down after a few days but perhaps there’s been a little change in your styloid position or length that is “keeping the fire going”.
I’m glad your appt w/ Dr. H is soon. Try icing your face/neck & see of that helps. If not, heat would be the second option. Also sleeping w/ your head elevated (if you aren’t) might provide some relief.
Thanks Isaiah! I also was wondering if holding my mouth open at the dentist for a while could do something in there?
I got two new gel type ice packs and they are helping a lot as long as they’re on my neck. Those along with tramadol have been my saviors, so glad Dr H gave me some to have on hand just in case.
I do find dentists upset my Trigeminal Neuralgia- whether it’s the poking about, keeping mouth open wide for a while, or extra tension because it’s not a pleasant experience!
Tonsil stones seem to be quite common with people with ES too, it could be you’ve maybe pushed a little bit unwittingly on the styloid when you got the tonsils out, or both things combined.
But better to have a flare up before you see Dr Hepworth so you can have a think about surgery & discuss this with him- would be awful if it happened a few days after seeing him & then you have to wait for another appt! Your body’s way of reminding you it’s not gone away! I hope that it does settle down for you soon, gentle hugs…
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will update after I see Dr H in a month.
Could be because it is dependent on my head position or could be because it is not the cause. The neuroradiologist could not say what the cause was but he guessed maybe my slightly narrow transverse sinuses (Brain veins) weren’t flowing properly without the blood thinner. I’m hoping my head and neck surgeon Dr Hepworth can shed more light on what is going on. I just know the improvement on the blood thinner has been like night and day… I took it the first morning and by 1 pm my pain was almost gone. I had a slight flare up for a few days when I was at very high altitude, but otherwise it has been easily managed and intermittent. No real side effects on the blood thinner either aside from, well, bleeding a bit more when I cut myself and I’m a bit easier to bruise.