So frustrated after coil

I had a coil with stent July 1, 2010, no rupture. I am so frustrated with my recovery and with the doctor and his nurse. I am feeling so fatigued, not having clear thinking, can’t drive more than a 20 minute distance, can do crowds or have a lot of stimulation (sights, sounds activities). I just don’t feel like myself. The doc said two weeks complete recovery. I spoke to his nurse the other day and she said fatigue is a big issue and so are headaches with annie location, opthalmic artery. But everything else I describe she is not too sure about. She sounded so vague and I really could not get info out of her. I just want to hear someone from that office say this is normal and will get better with time.Everything I read on this site and others describe exactly what I am feeling but I still feel like I should be further along. Some days are good and I am so encouraged and others are so bad. Felt good on Friday and made a trip to Walmart and they are doing remodeling and between the added noise and the confusion of searching for what I needed because everything in the store was moved around, it totally kicked my butt. I have not felt right since. It seems like it takes me days to recover from too much stimulation. UGH!!!

Kimberly,

The first thing to know about aneurysm recovery is that there is no “normal”. Everyone has their own recovery time and path. Also that two week recovery time period is ridiculous! I don’t know ANYONE that feels 100% normal after two weeks. Doctors should NOT give such erroneous information out!

I can tell you that I had a horrible time with overstimulation. Grocery stores (like Wal-Mart) really stressed me out, and it took about two years before I could just relax and shop. I can also tell you that sleep is essential for aneurysm recovery.

Please, don’t be so hard on yourself. Take it easy, breathe, sleep, eat well, and try not to overstimulate yourself. You’re not alone.
JulieNH

Another web site to learn more about aneurysms, the more you know, the better you’ll feel: http://braintalkcommunities.org/forums/forumdisplay.php?f=85

I can’t imagine any physician making a statement like “two weeks complete recovery” with regards to aneurysm repair. Fatigue, trouble focusing, over stimulation, in my opinion, all can be related to aneurysm. Each of us experience different recoveries with some similiar issues, i.e memory loss, fatigue, etc. Each situation depends on the location in our brains and the route to the aneurysm. Please don’t be hard on yourself…I am three years out (coiled and clipped) and still recovering. Take one day at a time. You will have good days and bad days. Never forget that you are a survivor. May your good days be many! God bless.

Thank you so much for the encouraging words. I received a jury summons right around the time of my coiling and the doc sent a letter to the court stating I will be fully recovered in two weeks from the procedure date. I do have a follow up with in October but I am thinking of going to a neurologist just to have another professional to talk to.

I agree with Kimberly. What your experiencing is completely normal. Everyone’s pace of recovery is different and can stretch out for some time. For me, driving left me exhausted for quite some time. I could do at most a 1/2 hour and then it stretched to 45 minutes and then an hour. But it was almost three years before I could drive more than 2 hours and not be completely wasted with fatigue the next day. So relax, listen to your body, and don’t take the two week recovery timeframe that the doctor gave you to heart. I always think of it this way, your brain is involved in every single thing that you do. So when it needs time to heal, it has to make you sleep otherwise energy is being diverted to whatever it is you are doing.

Kimberly, I am so surprised to read this… has been in media coverage a number of times for their overall excellent service…not directed at aneurysms; however, it made me anticipate all…including aneurysms.

As for recovery, it does vary, by the overall health of each of us, the location (artery) of the aneurysm; the size of it, the quality of the treatment…

It has been 7 years for me and I still have fatigue…and, when I am fatigued, I do not drive.

If your insurance is thru your employer, I’d suggest talking attempting to secure help from your human resources dept. If it’s not, attempt talking with your insurance company. Presumably your insurance company has contracts with other hospitals…

Pat

I was there in January and had a wonderful dr. I do not know the recovery period for the coiling but I will tell you everything you described that you are going through was exactly what I felt. It was extremely hard because my youngest son played basketball. I had missed more then half his games due to my husbands health. I forced myself to go because this was his senior year and I could not stand the crowds and all the noise I felt like I was going crazy! I could not go shopping either and it really bothered me riding in a car. I did find that alot of what I feeling was not so much from the surgery but I believe it was the side affects from the siezuier medicine they had put me on. When I got off of that I was starting to feel better! You will get tired easly and do not get frustrated because you it is your brain saying “hey I need to sleep a bit to heal”. I still get pretty tired throughout the day.



I am here if you ever need to talk. Take care and God bless you!

Girllllllllllll, relax , you are trying tooo hard,my last surgery was a year ago and I still have headaches everyday,I also pushed myself and then I just figured ya know, maybe I should just not push myself as hard,if i cut the grass and do the laundry and do the grocery shopping and do ect ect ect ALL on the same day I get wiped out for at least a week or more , so i do grocery shopping one day, do laundry another day, cut the grass another day, do ect another day and so on, we are the same people as before our surgeries, we just need to change our routines, and I swear these coils in my head are like a barometer!!! When the weather changes i can feel the pressure in my head!!! things will get better,in time,took me a year before i could sleep without my head propped up, and yesterday I slept on my left side for the first time in over 3 years!!! it really will get better,

Yes!! I do think it is a barometer! I have issues on cloudy or rainy days or when there is a temperature drop.
You are right, I do have to space out my activities or I am shot for days or even a week.
Thank you everyone for the positive words, this site has really been so helpful!

My body temp issues advanced annually…initially from the cold…then not sensing sun/heat…I have always been active in both sun and snow…have made a lot of adjustments to my activities. Staying inside so much, my vitamin D dropped significantly. Please ask your MD/neuro about your symptoms/reactions; ask if any blood, or other, tests need to be done.

I 100% agree with everyone!! I’m 2yrs coil SAH and I’m still fatigued & headac-y – I try and space out my errands after work before the kids get home & even try to squeeze in a 10min walk outside but by dinner I am WIPED OUT. Depending on the day I am wiped out more than others. I had to do a 3 hr drive and it was debilitating - I was exhausted. I won’t do it again for awhile. The overstimation I thought was just me?!! Not that I want anyone else to feel what I’m feeling but I’ve been experiencing the wanting to run out of a not even do crowded walmart the other day. I was with my son & we were in an aisle and two people with carts came in and I took him and our vary out of aisle until they were gone. I needed personal space. I left him with the $ and went to the car to wait for him. I thought I was going crazy, no it’s just that bitch “Annie” - get it?? Annie=aneurysm ?? :slight_smile:

My little joke

Ha ha, I love it! “that bitch Annie” I agree 100%!

I know just what you are talking about! I had an aneurysm rupture and it was coiled in May of 2007 and I still have all the problems you are having, I could have written your post as far as the problems go. I know you didn’t rupture, which you are one of the lucky one, but I am sure it is still slow going, for some more than others! Hang in there and know that others can relate!

Hi Kimberly,
I also had my aneurysm coiled without rupture. We are truly fortunate and are blessed to have it treated before a rupture. Think how lucky you are to be alive and stay positive. I am not sure how old you are I was 47 when mine was coiled at Mass General Hospital. I was very fortunate to have the founder of this foundation as my surgery. His name is Dr. Christopher Ogilvy. I am know 48 and do have some of the same symptons but I wonder if it is part of being stressed and the pressure we may put on ourselves to be fine. Listen to yourself giving you messages to slow down. I am still teaching myself to do this it is not easy,especially being a mother,wife and provider. Please try to stay positive and look for all the blessings around you and will distract you from these side effects. Take Care and be patient.

Thank you for the kind words. I find that each week is somewhat better than the previous. I am truly happy to be alive! I am 44.
I really have to learn to listen to what my brain and body are telling me. If I have to slow down then I do.
I DVR so many shows so that I have something to watch when I have to rest!

You are welcome. I am glad to hear each week you are doing better. I have been doing allot of reading. I am reading The Girl with the dragan tattoo trilogy. I just read the second one The girl that plays with fire. They are great reads. My daughter bought them and I read and loved. Just thought to suggest reading is a great distraction as well. Take Care.

I agree with you. I belong to a book club that meets the first thursday of each month. I read for that club as well as for my twice-a-month ladies bible study group. I also just read suggestions that friends pass along. I’ve thought about joining an online book club but never pursued it further. I’m too busy right now but maybe one day.