Brain Aneurysm Support Community

Life after coiling and craniotomy

A month after my wedding in 2005, I experienced the worst headache of my life at work. I was 31 at the time. I chalked it up to a migraine or hormonal imbalance so I went home and went to sleep. I vomited every hour on the hour during the night and woke up the next morning exhausted, but feeling better. My mom told me that a family member died from a ruptured brain aneurysm about 30 years ago which prompted me to go to the hospital. A CAT scan showed a bleed and I was emergently transferred to a hospital that specialized in brain aneurysms. The next morning I had endovascular coiling done. I was in the hospital for 12 days... 10 in ICU and 2 days in a regular room. I followed up with my neurosurgeon for 5 years after the initial bleed and was given a clean bill of health. Six years later, almost to the date of the initial bleed, I went to my eye doctor for a routine eye exam. He diagnosed me with a partial 3rd cranial nerve palsy in my right eye and called my neurosurgeon right away. I went for an MRA scan and it showed that another aneurysm grew from the original one and it was bigger. The only symptom I had was blurred vision when I read my daughter a book at an angle at bedtime. Otherwise I felt fine. I thought it was the bright light in my eye causing this. I was admitted into the hospital and was told that I was going to have a cerebral angiogram and most likely a craniotomy. Well, I had the craniotomy in November 2011 at the age of 37. Ever since the second aneurysm, I deal with fear and uncertainty on a daily basis. Also, not sure if what I am feeling is normal or not. I try and keep my aches in perspective, but a development of another aneurysm lurks in the back of my mind. Some days I forget about both of my surgeries and other days I can't forget the second one. The second one was definitely a surprise, especially since I was given a clean bill of health. I take one day at a time and pray to God every day that another one doesn't develop. If one does, to give me the strength to get through it. I have a 5 year old daughter and 3 year old son that I want to see grow up and a wonderful husband that I would like to be married to for a long time.

Hello Karen ,

I know what you mean, worrying about another bad surprise coming out of the woodwork. In 1998 at age 36 I had an aneurysm with the extreme headache and focal issues with my eyes in the AM hours before the big headache, & the aneurysm grew so much that night it actually snapped my optic nerve in two. Being one who has never been ill, I honestly thought I'd just make a visit to the ompthamoligist...he diagosed me right away and sent to the ER, and the next morning I had a craniotomy. What a shock! I honesty never gave it much thought about getting another aneurysm though, not til I suddenly had eye issues in 2006 (After a killer tooth infection)...SO I was worried it may be another aneurysm, but...I decided to ignore my symptoms until the aneurysm wouldn' let me 'ignore' it. I collapsed at work and was in a coma for 6 weeks, where I received coils to fix this new annie...then the coils compacted in 2010 and I landed back in the hospital, where I was able to make a choice and chose to have another craniotomy...hoping for a permanent fix. I get paranoid as all hell no wadays though, whenever there is some sort of shift in my eyes (or perceived shift) and lacking insurance, I really get freaked. My 1st Neaurosurgeon never mentioned to me that I might get another aneurysm, and seeing that there wasn't a ton of easily attainable knowledge out there to access nor this website at the time, I just figured the 1st aneursym was just something considered pretty rare that i'd never have to go thru again. Not so ! This website has really enlightened me, for good or bad. So yes, I understand that paranoid feeling! Take care, Janet

Hi Karen, im Brenda from England, I have just found this site,i had 7 coils put in a annie 4yrs ago,after a stressful time on the 22nd Jan 2013 wen my brother took his life,as u can imagine the way I reacted,have been left with eye pain and a feeling of pressure,i am having a MRI with dye injection,i am fearing the worst,

So sorry Brenda for your loss....How devastating. Very glad to hear you're heeding the warnings and getting another angiogram/MRA, praying for the best outcome for you (no annies, but lots of stress) Peace to you, Janet

Sorry for your loss Brenda. Praying that everything turns out okay for you. If there is anything going on, hoping the doctors can fix it for you.

Hi Karen - Lynnette. I too have had a coiling and a craniotomy clipping, altho mine were in reverse order. My craniotomy was done 20 years ago now, and my coiling was done in 11/2010. I also have 3 small aneurysms located in the same area of the two repairs - all on the carotid artery behind my right eye. Since 2010, I have had severe headaches, along with the fear of another one going. With the location of the coil and the clipping, repair on any of the other three if they enlarge would be nearly impossible. My headaches have 3 stages, and one of those is constant. Too much titanium in too close proximity I guess. Pain blockers only reduce the pain slightly. I thought the coiling would have been easier then the craniotomy, less side effects...not more. I can barely function at this point - tried all medicines available. Only option left is Botox - freeze the nerves in that area. My choice is to be possibly pain free, but wouldn't know if one of the 3 existing would rupture. Not much of a choice. Do you have any similar headaches? I've heard that quite a few people do have headaches, but not many of us around that have had two, each with a different type of repair...so it's been hard to find any answers...or suggestions.

I sure wish you the best - I will pray for your recovery. Be strong!

Lynette,

Did you have the headaches after you have the coiling or even before.

I have 3 and I am in the process of deciding if/when and where I will treat the biggest one(7MM).

The other 2 are 3mm.

I do not have regular headaches since I had both procedures done. However, I do feel some tightness where the cut is from the craniotomy. I noticed that when it gets very cold, I feel it more.

I had headaches for about 3-6 months after the craniotomy. No headaches again until the 2nd started to bleed. That one was coiled. the headaches began after that. I highly recommend Abbott Northwest in Minneapolis, MN for the coiling. My issue is more the coil & clipping are very close and seem to interfere with nerves. My cousin had had two coils - hers were 5mm & 7mm...and she has had no issue since. Dr. Tubman at Abbott did mine...outstanding facility!

Hi everyone & thanks for your good wishes, I had the MRI with contrast this afternoon, have to wait until a week tomorrow for results, I asked for a eye mask & ear plugs so I cant see the tiny entrance to the scanner, they said this is a frequent request, so I didn't feel quite so stupid, ha ha, I still have the pressure pain behind my eye & am convinced the coils in the ophthalmic region is pressing on the eye, can anyone recommend better pain relief as I am on tramadol & co.codamol, I feel a bit of a lucky girl after reading your stories Lynnette & Karen, you both seem very strong, good wishes & prayers to you all...x

Brenda,

There is amed called amitriptyline that is for nausea, nerve pain , antidepressant etc, etc.

I have not taken it yet, but I am considering to take it. Both a gastro and neuroligist are urging me to take it since I have had eye pain and nausea for 5 months since the day that I had my angiogram for diagnosis. This med has been on the market for decades....

Start with a low dose of 10 mg and then 20 mg. Ask your PCP or neurologist to prescribe.

Do not go into nerve meds like celebrex or Lyrica which are an absolute horror. Hope this helps!

However, I do get headaches when I work out too long on the treadmill or elliptical machine..

I take tramadol, oxycodone (percocet) and they just started me on amitriptylin. Nothing really works - they knock my constant headache down to about a 5 on the pain scale. I did not like the way I felt after taking the Amitriptylin for about 2 weeks. My Dr. told me to take one (25mg) every other day instead. This med is stop the onset of any headaches. I have not seen that result, but am continuing to try it...it can't hurt at this point.

Again...wishing you all the best....

I will ask my doctor about the Amitriptylin , thanks Lynnette, I would try anything at the moment.

Hi Liz,Lynnette has suggested Amatriptalin also so will ask my Doc. I don't know if I have said coz im dozy like that. ha ha, did your annie rupture or not,mine didn't and was found after a thunderclap migraine and coiled with 7 coils, im scared they will find a small one I had has got bigger or the one hey coiled has grown, im such a scardy cat arnt I, such a bad way to think, should be more positive I know.

Good luck Brenda! Sending lots of prayers and good vibes your way!

Hi Karen, You where so young when all your troubles started, like me you started with a headache, but I have always been told my migraines have nothing to do with the aneurysm which I find hard to believe, but who am I to disagree with a neurosurgeon. ha ha...do you or will you have follow up mri scans with contrast.? good wishes and prayers to you...x

I have a follow up MRA with contrast in August. Usually my MRA's are without contrast but I had a weird "episode" on Superbowl Sunday that freaked me out a little bit. I lost temporary vision in my right eye playing a game on my cell phone in the dark(just with the tv on). Once I put the phone down I couldn't see out of my right eye. The doc and my hubby told me that since I have the 3rd cranial nerve palsy that my pupil delays in focus. My vision came back in less than a minute but it was scary. I had a scan the week that it happened and everything looked okay. However, I don't feel settled so the doc recommended doing an MRA with contrast in 6 months instead of an angiogram. Not a big fan of needles since I have small veins. They usually have a hard time getting them in me. The scan itself is very relaxing to me. Once I fell asleep in there.

Hi Karen, you have got me thinking I had mri with contrast, I maybe should have had a MRA as it shows more doesn't it, i have ad a mra before i think its when they put the dye in via the groin isn't it, i forget as iv had so many tests in the past,!

An MRA is a form of MRI. The procedure where they put the dye in via the groin is an angiogram. An angiogram is different from an MRI/MRA.