It will be 4 weeks this Thursday, from the date of my coil procedure. I am finally starting to think more clearly. I still have headaches but they are more tolerable. The fatigue is getting better. I am so shocked the doc said “fully recovered in 2 weeks”. Anyone else have lingering issues after a coil, without rupture?
hi kimberley, i to had coiling 2 months ago and feel really tired with headaches i have days where i have loads of energy then the next day i cant even get out of bed, i have this tinginf sensation in my head as though someones hitting metal in my head really freaks me out, my memory all out of whack the doctor said it could take 6 to 12 months before im back to normal. i had to aneurysms which one had ruptured, i still cant get my head around this.let me know what sort of things your experiencing. take care
Some things are the same! I have a day that I have more energy and I am more active and then I pay for it the next several days. I find if I have too much stimulation (sights, sounds, activity) then my brain feels weird, like a zap or a weird sensation, and some vague dizziness, it is hard to describe. Also the heat is bothering me much more then it ever has. I also get car sick much worse then I did before. I have been driving a few times but I can only drive short distances (with me being the driver) because I just don’t feel with it or sharp enough and I get very tired when driving. My doc said 2 weeks of recovery right after the procedure and I don’t even have a follow up for 3 months. He does have a very cavalier attitude about the whole procedure. It makes me concerned that I should be further along then I am. I did not have a rupture. Mine was 5 mm and it was coiled with a stent and he found another but is not worried because it is small and below the dura.
hi Kim…i had my unruptured annie coiled on june 1…mine was 8mm i was very confused for the first few weeks after, but a quick recovery, i had also had a stroke on the operating table and lost the left leg…but that is all back to normal also…they also found another annie very small 2mm but are not worried about that one saying it is outside the brain cavity or something…i think we just get so nervous since this happend to us…i did have a six week check up with my nuro not sure why your didnt schedule one…now mine says i just get a 6 month from surgery mra…then a yr one then it will go to 3 yrs…so i just hope and pray for the best…
Hi Dawn…thank you for getting in touch…it really helps when i see others having same feelings as me…although you had a rupture i didnt…thats why i was so bothered about my slow recovery…but after joining 3 different forums im getting the same response…i also spoke on the phone to someone from “brain and spinal injury centre” and she said you have to look at it this way…when you have a hip replacement or any other op or broken limb ect your brain sends everything it needs to help mend it…when your brain has been operated on."which is a major op " it is shocked and how do i mend this …so it sucks everything from the rest of your body…its not interested in the rest of your body its just concerned with itself so im afraid we have to let it mend however long that takes…she said it can take months not weeks…that really helped me…hope this helps others feeling the same…its 10 weeks today since my op…yesterday i went out to lunch with my hubby and daughter …i enjoyed it but when i got home that was me done for rest of day…ive to be honest im bored stiff get really fed up…but at least im alive…speak soon Saffy xxx
hi saffy,i had a really good day yesterday ,cleaned all the way threw the house,made tea ive been like that for a few days, i thought brill ,is that it ,im back to normal then wham headache today i really feel like crap with this nervousness in the stomach its all on top of my head, i really dont want take painkillers as ive been on them for 2 months and they were getting worse so i stopped taking them and im getting less headaches. haqd anything like this.x
Thanks so much for sharing your experience. It is reassuring to know I am not the only one taking longer to recover than what the doc said. I have the good days and the bad days. The past two days have not been good. I went to bed with a headache and woke with one yesterday and I was dragging the whole day. I even took a nap for a short time. Just tired and dragging. Woke today with a headache too. I hate the “not with it” feeling. I am with you, I am bored stiff with the sitting around. I try to walk every day, I have gotten up to 15 minutes and yesterday could only make 10 minutes. I feel guilty for complaining because like you, I am happy to be alive!
What other forums did you join? It really helps to know others are having the same experiences.
Hi Dawn and Kimberly…i am learning through my mistakes…but i may have fallen for the feeling better trap… on my last message i told about my lunch with family yesterday…to-day i got up feeling ok again so what have i done …been shopping with hubby to sainsburys…sooo lets see what to-morrow brings…i pray i,ll be ok …but past experience ended in bed a couple days…i really hope not…if im ok i will be lazy next few days…thankfully not suffering many headaches now …but i didnt have a bleed the other sites im on are “www.dailystrength.org”…“www.brainandspine.org”…daily strength is mostly american…but brain and spine is english…another very good site is "behind the gray "…i really think we have to be careful how much we do…but talking to you and others is helping me so much as i really thought i wasnt being normal …thats with reading the pathetic booklet i got from hospital…i really think when im 100% better im going to write a booklet on exactily how it is and send it to my hospital lol…anyway you take care…speak soon love saffy xxxxx
HI Kimberly,
I had an 8mm annie rupture last year. I just celebrated my 1 year! I have to say I felt very similiar to you. Nobody actually said that I would experience certain things. They said I’ll be tired, some headaches, but for the most part the coiling was a success. My annie is on my “circle of willis”. When it initially burst the blood went my spinal cord, leaving me with lower back pain, which I still have. Over the past year I have tried to find a list of symptoms that would say yes you will experience this and that. None, so I basically chalk it up to well it must just be a glitch. I’m a chef and many times simple methods I become stupid, I’ve breaded items for years, but for some reason I dumped the flour, eggs and crumbs all in one bowl! Then I start over. A couple weeks ago I was pulling out of a drive way of the mall and couldn’t remember which side I needed to be on. So I am not sure either if there are any effects from the procedure. They said I was fixed, but, I still feel “off”. I’m very thankful it saved my life but, many times I wonder “hmmm that was strange!” So I guess every brain is different. But, you do have to take it easy. The brain is so complicated, I think that any messing around with takes time to heal. I hope you feel better soon.
Hi Everyone…well my busy week last week has ended up fri sat sun mon feeling awfully weary again…i rang my hospital yesterday(neuro ward ) for advice…waste of time …was told there wasnt anyone who could help…(wonderful ) but ask your GP to do some blood tests…so am going to see my GP later…i really cant believe the lack of after care we have in preston at least…im seriously thinking of ringing Hope Hospital in Manchester as ive been told there neuro dept is one of the best…or am i pushing it and need to accept its going to take months to feel better…i know i couldnt have lived with leaving the "bomb in my head " but the way im feeling…at least i felt ok …all we want is to be told its the norm…ive said before i can understand you who have had bleeds feeling this way …oh well forgive my moans…and hope you are all feeling better…love Saffy xx
Hi everyone,
I totally understand what everyone is saying. Some good days followed by several not so good. The whole brain isn’t working right is exactly what I am experiencing. An RN told me that a neurosurgeon looks at the mechanics and says ok, I fixed it where a neurologist looks at the physiology of the whole process. Maybe I should go see the neurologist. I just want someone to say this is all the norm for recovery after this procedure and that it will take time, not “you will be completely recovered in 2 weeks”. The way I feel now is that I am far from, well not exactly far, but distant from recovered!
Kim
Hi me again…just got back from Drs and it was our locum …we always get the same one and hes very nice…what a help…hes had a few patients who had coilings…he said and youve touched on it Kimberly…your like a big ship thats had a bomb hit in the main captains cabin…its not your going for walks or shopping thats to much for your body…its your damaged brain that cant take it…he said even listening to songs makes you try and sing in your head and thats to much …gentle no singing music is the best…reading will wear your brain out and doing family shop a big no no…he said it can be up to 12 months before you feel 75% and you may not get back to 100%…so ive been told to go slow slow and try not to get upset at the fatigue…i must admit hes cheered me up a little…he said it is NORMAL the way we are feeling…so weve to try and not overload our brains…hope that helps a little …Saffy
Thank you so much for sharing the info! That really makes sense to me. I have to learn not to get frustrated with myself and it sure does explain how I feel when there is too much stimulation.
Hi Everyone,
I read your posts and thought I might be able to reassure you that these feelings and symptoms are normal. I had a 7mm cerebral annie in the middle of my brain, sort of a few inches behind my right eye. I had to get my first coiling done and then all the checkups and then I had to go in for a 2nd coiling to add more coils because they had compressed. So I definitely know what you are talking about when you say you are tired, even after you have done the simplest things. But you have to take naps - even though they say you are okay after 2 weeks you are not completely okay. I remember right after my first surgery - I looked okay and it was like 2 or 3 weeks later and some friends asked us to dinner but there was no way I could do that. I tried to explain that two days before that I took my first big adventure with my husband to get bagels at a local place. It was so weird -your brain is trying to remember how to filter out a lot of things at one time and it is EXHAUSTING! I tried to explain to them that you don’t realize how much your brain can automatically filter so you can really focus on something. So I explained that we went right down the road and it was so sunny it was hurting my eyes and then driving and seeing everything move by really fast was making me feel weird, then we got into the bagel place and you have kids yelling, people talking all different levels, the TVs are on, all kinds of movement, the ceiling fans were on, music was on, it was a lot but I didn’t say anything. I just went really slow and I was like…man, this is exhausting and my dull headache was getting worse and I was sitting there trying to act like things were fine but with all the noise and the ceiling fans and the lighting and all these kids running back and forth it is kind of like I started feeling like I was falling out of my chair. So my husband saw that I was about to fall out of my chair and said ok…that was enough fun for your first outing. When we got home I was like…I am exhausted, let me just take a little nap and I woke up like 6 hours later! So I tried to explain to our friends that meeting for dinner at a sports bar where everyone is drinking and really loud and the tv noise feels like it is stabbing my ears and the ceiling fans start making me dizzy and all of that - they said I look fine and just wanted attention. So my point to the story is that you may look fine but your brain has a lot of connections it has to rewire, stuff we just took for granted. Yeah, some people are going to say you are just taking naps because you are being lazy but you are not - your brain is healing. People at work may look at you weird when you can’t say a word because that exact word just slipped by and you can’t think of it but they have no idea what is going on. Don’t be so hard on yourselves and just take naps often. Just slowly get back into doing things (like reading, walking, going on little trips to the store, etc.) - all these are things you do and don’t realize you are filtering a lot of processes in your mind and your mind is trying to filter out what you don’t need and what you do need at that time and it is so exhausting so just take care of yourselves and make certain you always go to your check-ups and we all are very lucky that they have this technology now or we would be in heaven right now! Take care and God Bless All Of Us!!!
Thank you for the reassurance. You describe completely what I am feeling. It has now been 5 weeks and I am getting very frustrated but I have to remember to give my brain more time. That “2 weeks and completely recovered” is always in the back of my mind. I wish my doc would have never said that, it is really unfair for him to not explain what I “might” be feeling after the procedure. I realize everyone is different but some realistic info would have been helpful. I received a jury summons and the letter he sent the court said I was under his care and would be completely recovered 2 weeks after the procedure. I can’t even drive more then a 15 or 20 minute distance because my brain can’t take it, let alone listen to a whole court case!
I really did myself in on Friday, I attended a funeral in the morning and then I went to look at 2 apartments with my daughter. I ended up getting very car sick and she had to bring me home. My husband took one look at me and said I told you it would be too much and gosh was he right. I was so exhausted and dizzy and queasy! I was out of it for a day and a half!
Thank you everyone, keep the info coming, I’m sure it helps alot of us!
Hi Everybody,
It is reassuring to know that I am not the only person going through this. I had my coil procedure done on August 5th. When my doctor told me I would be back to work in 2 weeks I thought I would be 100% and back to normal. Well, I have been back to work for about 2 weeks and while things are getting better they are far from normal. Like everyone else, I am still having headaches, fatigue and problems filtering. My biggest problem though is with decision making. It seems like I have a set quota of decisions that I can make every day and once I have filled it I am done. My secretary asked me a simple question yesterday and I practically had a meltdown in my office because I just could not decide what to do. Luckily it was through email so I did not completely embarass myself. I have realized that I just have to pace myself and just do what I can do. Also, I have a set morning routine to get ready for work. I have found that if something upsets that routine my entire day is messed up and I was not like that before the procedure. I am just taking life one day at a time. I really want to thank everyone that has posted in this thread. While I would not wish this on anyone, it is very nice to know that I am not alone. Peace to all.
I had a coil and stint- I still have days of fatigue and headaches-and sensitivity to light.
Hi Catey and Everyone,
Catey, you are doing so well! You just need to take things slowly - you were in surgery less than 1 month ago! Your brain has to rewire all types of connections and sleeping is how you will get better. When you sleep, that allows your brain time to heal! I have had the same things happen to me with work and I was a Sr. Business Analyst. The things that I could quickly comprehend and act upon can completely set me back and it is just something that takes time. I was trying to explain it to my husband that comprehension and logic problems are so difficult for me now so I give him examples whenever I read one. This is just a silly example so you can get the point but.....say that Person A and Person B must work on a project, Person A can only work this certain schedule but a Person C and a Person D said they can assist but they only know partial procedures. Person A and Person C can't work together because they both need a more senior person. Person D only knows one type of methodology and Person A knows all of what you know but will be out of the Country and not available - - how can you meet the deliverable deadlines, what team will work on what and when, and who is getting what assignments when, etc. I can't even figure that out anymore unless I sit down and write it out and then I forget so much! It is like I can only go so far into a logic problem and then I forget or just don't know what they are talking about but I used to read all of these issues and just review it quickly and say...this is the plan and this is how we are going to do it. Now, I am like..what???? So now I am doing less stressful work and it is much easier and I am not freaking out in my office trying to write out an answer without people seeing that I can't do that quickly anymore. I was stressing out every day because the logic issues are constant in that line of work and I was lost. It took a huge blow to my ego, and to my wallet to decide to take a less stressful job but I had to tell myself each night.....okay, so maybe you are going backwards in your career but at least you didn't die! I just said to myself that God must want me here for a reason and even though I am doing less stressful work with a little over minimum wage now, at least I have my health and my family and friends. So yeah, I know exactly what you mean and it very hard because at work you can't let anyone see that you can't figure out a problem and you need to be alone to figure it out and not let them know you are seriously freaking out because you can't figure out the answer but you were able to do it much easier before your surgery! But know what, you are doing great! You just have to go slowly and figure out what is comfortable for YOU! You have to tell your family that you need to take naps and you need to take things slowly and not feel bad for not being able to do 100 things at a time. Then you need to figure out what makes you happy with work! You can easily stay in the job you have but you have to give yourself a break - your brain is making so many decisions before you even get to the office! Just don't tell your office about anything about what is going on because they do not need to know and they can use it against you. Just take it one day at a time and take naps each day after work and a lot on weekends! Each day you are getting better and can do more and more but you can't push yourself! Try not to worry because we really are blessed, right now it might be kind of sad to you because you are finding out things that take you a little time to do but each day you will feel better and when you get really sad - just say...Thank you God for allowing me to be able to have the surgery and also to still be alive. Once you look at it that way, the stuff about work just doesn't seem so bad. Don't worry, you are NOT alone! Best Wishes!
Hi Kimberly, you are only a “baby” in the annie world. I had my coiling in Jan 2011 and the first few weeks were full of headaches, fatigue, etc. I also had a few mini strokes. Went back to work full time after 4 weeks and though to date I still have some issues, I accept that things will never be the same again and move forward. Give yourself time - it will get better. Each day is like a new awakening.