Hello! I am 48 hours out from a coil embolization to treat an unruptured aneurysm. I had a pipeline embolization six months ago to treat a large unruptured left side aneurysm. That has been a rough recovery. It triggered my trigeminal nerve response. So, tension and pressure headaches, very bad muscle tension in left shoulder blade. It’s finally starting to ease up a bit.
I am wondering what other people’s experiences have been with coils. I have headaches on my right side - above my right eye, temples and side of head. Tylenol helps. Pain/pressure seems to kick up a bit when holding my head in certain positions. Otherwise, just general fatigue. Also, wondering about recovery time or if there’s been anything you’ve found that was unexpected.
I’m just laying low - resting and trying to sleep for now!
I hope you are getting a lot of rest, hydration & protein and that your recovery goes smoothly.
I had a pipeline & coil embolization of a 31 mm rt ICA unruptured pseudoaneurym two years ago. 22 coils. It went smoothly but I was rehospitalized a week after discharge because of swelling. Looking back I definitely overdid it and if I could do things differently I would sleep, hydrate and eat more protein as the smart folks here recommend.
Our bodies are all different and recovery took me a lot longer than I anticipated. I also had a trigeminal nerve response and have some nerve damage from swelling which seems to be permanent at this point. I started physical therapy three months post procedure to regain head and neck movement, deal with pain, and improve strength & balance. That helped significantly. One year post procedure was substantially better, two years even better, though I am not what I was before the procedure. However the aneurysm is completely occluded, which was the big life and death issue that needed to be dealt with.
Angiograms still seem to set me back a bit, and there are some head positions that cause me pressure/discomfort/some pain. I do head/neck PT exercises regularly and the nerve discomfort I have is manageable with ice/cool treatment and Tylenol. I have dizziness sometimes so work on balance to try to avoid falls. I still have migraines, but post procedure I have positive visual auras, which makes it easier for me to stop and take care of myself to try and prevent a debilitating migraine. I have pulsatile tinnitus after the procedure but my scans all look good, so it’s probably because of altered blood flow and I’ve learned to not let it keep me from sleeping.
Anyway, please take my experience with a grain of salt - I see many folks here recover very rapidly from coiling with no complications! Also in the big scheme of things my symptoms are VERY small and manageable and my whole medical care team has been very supportive. So I am thankful for that and just have to take better care of myself than I ever did before the aneurysm was found. Also I’m not sure what is due to the procedure, what is aging and what is being in late perimenopause without hormones or ibuprofen. Bodies! I’m thankful to have this one for a while longer.
Thinking positive thoughts for your recovery,
Kai
(Edited to add - I just gave your previous posts a look and realized I had not addressed fatigue - yes again, not sure how aging would feel if I hadn’t had brain surgery, but now I have learned to pace myself and I don’t do even close to the number of social obligations I used to before - I have to save myself for work and the connections I really want, there’s just not enough energy for more. And life definitely feels better during the times when I am going to bed early and sleeping a lot! Though it’s harder to do than I would like. )
I’m in the same boat as @Shinykai on angiograms setting me back a bit. But I am allergic to the dye. So I’m unsure exactly why I get set back and neither did my wonderful neurosurgeon. Presumption is the change of blood flow. Interestingly the stent placement in 2020 did not set me back as much as the others did. The next diagnostic follow up angiogram, I went into severe anaphylaxis so Dr. Q-W was pushing the saline solution through, aa lot more than the first ones. Seven bags maybe? It was a lot.
I think it’s very cool when members know how many coils they’ve got, I do not. All I know is she’s used different sizes and on one attempt, she told us that she told the Resident to “keep them coming” and something akin to stuffing that little bugger as much as she could. Wouldn’t it be neat to know how long the coils are if they were still straight and back to back? Medical science never ceases to amaze me.
Hydration is the key for me following either type of angiogram. I have to drink 3 of those $1.00 bottles of Gatorade and twice that in water for several months. They were 32 ounce bottles, and became 28 ounce bottles. She didn’t change that rule though. Back then, if I was hydrated enough and ate my protein, headaches weren’t as bad. Today, if I stay hydrated I’m basically headache free until allergies act up. I do need to make sure I’m getting enough electrolytes to balance out the amount of water I drink. Don’t want to reduce my sodium levels. The sodium in sports drinks is not the same as table salt.
My first long running Neurologist warned me about taking OTCs for headaches as they can cause secondary headaches. No more than three times a day and no more than three days a week. Funny I can still remember that.
I’m extremely cautious about taking acetaminophen since I woke up in ICU back in the early ‘80’s. Seems it stayed in my liver and caused liver failure. The medical community didn’t know at that time what acetaminophen could do and I had been on some meds that contained apparently high amounts of acetaminophen for over a decade by then. I recall my PCP at that time saying he didn’t have anything stronger for my spinal issues so I should have a drink every night:zany_face:. They didn’t know about the dangers of mixing alcohol and pain relievers with acetaminophen either apparently. Don’t drink alcohol if your taking pain pills with acetaminophen is my experience. Please don’t take more than what the OTC bottle says to take.
Check with your surgeon on how much protein and hydration you should be taking as well as the Tylenol.
I just wanted to send along my good thoughts for your coil embolization. I am thinking of you, and I am optimistic you will be just fine!
Although I do have some coils, they were added post-rupture, so I do not feel like my experience will be of much help to you.
But, yes, fatigue always seems to be a constant for so many of us. For me, I have learned that things that seem to be relaxing are NOT if they stimulate the brain. So reading, ANYTHING with a screen (phone, tablet, tv, or computer - doesn’t matter!), or things with lots of stimulation (e.g. lights, sounds, smeĺls, noise) are cognitively draining, and will zap my battery. So, I try to reduce these, and/or intersperse with things that charge my battery to help get through the day.
When YOU are ready, please let us know how it went!
Thank you to everyone who shared their experience. The pressure headaches and muscle tension from the PED are easing up and now I am just managing the post coil healing. This was a much smaller aneurysm than the one treated with a stent. I only had three coils placed. I should mention that three months after the PED I had to have a full hysterectomy to remove an 18.4 CM ovarian fibroma that weighed 3.5 pounds - and then three months after that I had the coil embo. My body has been through a lot. I am hoping that things get back to “normal” soon. I have been on medical leave - since March and just want to get back to work. I’m not sure what I can handle without getting tired. I have noticed that getting out helps - walks, dinner, lunch with friends. I can feel the fatigue more at home. When the headaches hit - they shut me down but knock wood - I haven’t had one of those for almost two months. This has been such a journey and I am so grateful that I found this site. Thank you all so much!
My goodness you have been through an awful lot, no wonder you’ve been fatigued! Three long procedures in a relatively short amount of time. That’s a lot of anesthesia and of course the dye we have to have. When are you scheduled to return to work?
Hello @annv11,
Thanks for sharing more about your journey. It sounds like your body has been through so much in a short amount of time, so it makes sense that the fatigue would still be lingering. It’s great that you’ve noticed improvement with the headaches and that getting out for walks or time with friends helps you feel better. Sounds like you have a good balance between rest and gentle activity. I don’t have my own experience to share, but I hope you continue to see progress each day!
I have been on unpaid medical leave and would like to ease back in starting next month. I don’t think I can jump right into a 40+ hour week. I just get really frustrated - like I feel like I should be further a long in this healing journey. Hoping I get back to at least 90% soon. I am so happy I found this community!
We’re glad you found as us well! Have you asked your surgeon to have you ease back into work? Perhaps starting with a 20 hour week to see how you do then increasing your hours? Maybe you can do some work at home so you can rest when needed? I cannot stress enough to any of us the importance of learning relaxation breathing and practicing it all the time so it becomes second nature and is there automatically when we need it as well as the hydration, protein, rest, repeat mantra of Dr. Q-W.
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. They didn’t know about the dangers of mixing alcohol and pain relievers with acetaminophen either apparently. Don’t drink alcohol if your taking pain pills with acetaminophen is my experience. Please don’t take more than what the OTC bottle says to take.
