Things are different

My aneurysm was 13 mm the pipeline procedure was done on 5/22/14. I have some memory loss or recall issue, I am not able to think things through the way I use to. I get off balance, lights bother me as does loud noises. It's just different it's hard to explan to family how different things are for me. I understand it is unruptured, but doctor don't seem to know enough about the invisible affects of putting pipelines or coiling in ones head. I seem to be tired more so now then before my legs feel heavy. No depression, God has alway given me what I need to get through so I am going to continue to hold on to him. I do have my moments when i know there is something missing, things are different not sure if they will ever be the same but I am looking forward to finding out.

PJ you said it, things are different and it is hard to explain to anyone who has not been through it. But sometimes that is all you have to say to someone who has been through it. Those three little words and it is as if you have recited War and Peace. I had two that were clipped. One on my left ophthalmic artery that was 9 mm and one on my left neck carotid. Like you, neither was a rupture, life should be fine. Now, two years later, most days are very good, but it took two years to get here. The road can feel very long, the steps very slow, but you will get there. This site will be a godsend as will other resources. Also, do not let anyone else tell you how you should feel. You feel however you feel and that is just fine. Stay strong, Carol

Hi PJ,

Yes things are and will be different from May 14 on. You will learn and accept the new you just like all of us have. We are lucky, we were able to treat our aneurysm prior to rupture, so many here did not. It is a blessing to be alive and your optic on the world will change. For me everything seems sweeter and more precious.

You have many friends here who will listen and hold your hand when needed, and we are all just a click of the keyboard away.

Laura

Lights, noise, balance, heavy legs…yes, me too. I wear sunglasses everyday…outside. I have to fix the radio speakers so there is little bass. Walk some whenever you can…to help with balance and heavy legs. Feeling brain fog, etc…isn’t the same as before…but yes, guess you could call it that. You are just starting to recoup. You may find things like going to the grocery store a different experience. Just take a list. I used to feel kind of dizzy in the aisles…but not like the old dizzy…as in before procedures. Another thing…you may want to get new glasses. I now have a prism in one side…helps. sorry, hope I didn’t scare you… we just have to be self advocates…because like you said…those that aren’t in our shoes…just don’t understand. It’s been 9 years since mine and though I didn’t make it sound like it…am doing fine… Grateful for the procedures and grateful for life… The best of luck to you.

PJ, I had an unruptured annie clipped in August 2012. Initially, I experienced the same concerns as you are experiencing now, recall issue, inability to focus, balance issues (developed vertigo), loud noises scared the living daylights out of me (anxiety issues) and bright lights aggravated me to no end! On top of that I felt WORN out all the time. My Dr. said that was because my body was using my energy to heal. He recommended B12 and additional meds for the remaining issues. One year and 10 months later, I am MUCH MUCH better, but sometimes, I have episodes where I feel a bit off, but its okay. I'm way better than I was and not as good as I'm gonna be!! God is faithful. Be encouraged. It takes time and like Carol said, do not let anyone else tell you how you should feel. You feel however you feel and that is just fine.

PJ - I think you are doing well at this point! Had an Annie clipped in 1991, & it was about 6 weeks before my memory started to work anywhere near properly .

Had two new annies clipped in 2012, & did fairly well except for about 70% loss of vision in my left eye. The only thing I can tell you is to give it time. Whether it’s clipping or having the pipeline put in, this is a serious procedure. You will adjust to what has been done. Be happy that something could be done, and please don’t worry about what anyone says! We are alive and kicking! Life will go on with some changes, and life is good! I still have a 3mm Annie, but am doing nothing about it at this time. I’m 61 and feel like it’s great to be going on! God bless you & take it slowly!

PJ thank you for sharing your experience. I had a 2mm un ruptured aneurysm that was a wide neck and required a craniomity clipping surgery in Jan 2011. The aneurysm was clipped but the clip cut off the blood supply to right optical nerve and left me blind in the right eye and only 10% vision in left eye. I had another surgery within 11 hours of the first one to redo the clipping but it was too late. Doctors said I was a medical mystery! My family does not believe this. I agree with your assessment of doctors post surgical knowledge in the recovery phase. I still experience periodic memory loss or recall, feeling tired, balancing and ghost pain where the incision was located. Different lighting and loud noise also bothers me. I discovered that if I place my cell phone close to the side where surgery was performed and is on the vibrate mode, it triggers vibration in the exact surgery. Also, the emergency vehicles siren bothers me, I have to wear ear plugs when walking outside. I now sit in the back of church due to orchestra music. The one physical exercise that has proven to be a “God sent”, is participating in aquatic water exercises and swimming. I go to the YMCA three times a week. The water is healing in every aspect and has helped in my recovery. I too have strong faith in God and His sufficiency to carry be through this recovery, so I take one day at a time because things are not the same and my brain knows there is a foreign object planted. My family is adjusting as well. Stay strong and keep your faith active. Also, try finding a water class or swimming.

You will get better - stay on the side of positive, and don't "overthink" things. On top of everything else, anxiety will play terrible havoc with you for a while, but your comfort zone will come back, as things level out. Be grateful for all that you have, find appreciation in the little things, and don't be too hard on yourself. God bless..

Hi PJ!
I’m sorry you’re not feeling a hundred percent may YET. May 22nd isn’t too long ago. I’m not sure what the pipeline is but I had an Annie clipped on October 26 on my left side and two Annie’s clipped on my right side in January. My left side was tougher to recover from but I remember feeling like, why aren’t I the same, why aren’t I up and at em. My surgeon reminded me that I didn’t have my tonsils out. :slight_smile: give yourself some more time. I was very hard on my self and I can say now that I’m 100% and just expected too much. I hope you continue to improve daily. Love and prayers, Debbie

Hi, I understand fully, don’t give up! I am here to help. I had an unruptured back in 2004 and experienced all that you mentioned. Don’t worry about it if you work at it it will come. You are fortunate you can use the computer I couldn’t until recently so I,did it all on my own. Balance, lights and noise were major problem for me for years. I was finally diagnosed with “non headache” migraines. Memorary loss and recall came back but I required lots of sleep and learned to just clear my mind close my eyes and go to a peaceful place . Tired is part of the deal it took me about a year with that. Heavy legs was when I felt I wasn’t able to process information quickly enough. To me I always think in terms of overstimulation. Got a book my dr at MAss Eye Ear Boston recommended “heal the headache 1234” not a headache as such but you will see your self in there. Have told others and they are doing well

Hi again, computer, phone etc where all triggers. Did you ever suffer migraines before surgery? I was seeing black dots a lot still do if over tired. I know it is scary and frustrating and difficult for others to understand how your head feels. People thought I looked normal what was the problem. I saw an add for a tee shirt that hit home “walk a day in my head and you’ll completely understand”. I found ear plugs, sunglasses, tinted glasses, all helped me. Music was an overstimulation for me and I couldn’t play my piano or radio anymore. I then learned if I took deep breathes and did yoga breathing I could tolerate things. It worked for me, hopefully these things will help you. No caffeine, no preservatives, fresh foods only

Hi PJ,

It does get better - and yes, in spite of what the doctors say, for many there are changes. Getting used to the 'new' me has been challenging but I do have a very supportive husband, who says he would still marry me - old or new! :)

Blessings,

Maddie

It takes a good year to recover my Annie was 11mm I had it clipped has out of hospital in 2 days ,mine was unruptured while I feel pretty good I am not perfect be easy on yourself it,s less than a month you will bebfine

I'm reading all these and want to chuckle. Lord knows we all love our Neurosurgeons and God Bless every last one of them but please I wish they would stop telling us we are "fine". Thank goodness we have each other to vent :) Have a great day, Carol

I had a craniotomy and clipping of two unruptured aneurysms on May 8 (one was a three headed monster that took three clips, though!). Everything was fine, but then I had seizures on May 14 and spent another couple of days in the hospital.

Anyway, I can so relate to your symptoms! Mine are not like yours, but they are equally hard to explain to people, and I guess I look and sound pretty normal already.

I will also tell you that some of what you're experiencing may be a side effect of any medications you're taking (Keppra is not my friend, and yet I hear others in the anti-convulsant family are even worse in terms of side effects). Also, things do improve over time-- I have been doing some evaluations for therapy and some of the tasks I am acing I could not have done at all during the first week or two after I got home (which was only about 5 weeks ago). Give yourself plenty of time and patience. Hang in there!

That is exactly how I describe it. I don't think unless you have been through it you can understand. I get really anxious when there is a lot of commotion around me. My husband will say "do you remember when...." and I will say "don't ask me if I remember anything, because I can forget what we discussed yesterday. I have some balance issues also. My annie was found on accident. I was having horrible vertigo and they ran all kinds of tests until the MRI finally showed it. I had it clipped in 2010. Glad to see others have the same issues.

I also had 2 unruptured Brain Aneurysms stented and coiled in 2010. It was an incidental finding, I was found unresponsive with a Cardiac problem at home and during my hospitalization for that they found the aneurysms. Carol is right, the brain heals at a slower rate, because it heals when you "sleep". I had lots of problems and at times I thought I'd never get back to "normal", and I didn't... I'm now Better than Normal ;-). As I look back I realize that though it seemed like a long recovery (5 years), when I think about how serious my condition was, I'm Blessed, God did a quick work in healing me. Not only will you heal, you will also be restored.

I am waiting patiently for my 9.5mm Annie to be clipped, have been since I found out in Feburary... but I feel dizzy and off balance a lot, what sent me to the Dr. in the first place, however, they say it has nothing to do with the Annie, I beg to differ and am hoping that after the clipping I would loose that not get worse, oh bother...

Also I asked the neurosurgeon about my 21 year old daughter being screened and she seemed to think that my annie, is a "fluke" and that my daughter will be fine? Wondering if that is so after reading these posts. Also have 4 siblings that I wonder if I should mention it to?

I too have a faith in God and pray for my full recovery and that my daughter, 89 year old mom and my siblings and partner get through this. My daughter and Tim are going to be my caregivers but I want to also have a "living will" as I do not want to be in any type of vegetative state and not sure who I would put down as the decision person on that as Chelsey, daughter, was not up for it and I don't know if Tim is either. Did all of you have one of those in place.

Sorry lots on my mind this morning.

Hugs and prayers to each and every one of you :)

Brenda

Hi PJ, yes, things are different after having the Annie surgery. I had mine in 2011 and I’m still discovering things about myself ad a result of surgery. I am grateful that the Annie was small and unruptured, but I incurred an injury during surgery involving the two clips. The clips damaged my optic nerve and I lost 85% of total vision. Because of the structure of optic branches that connect to brain, the vision in left eye was also affected as well as loosing all vision in right eye. This was discovered soon after coming out of surgery and the surgeon performed a second surgery right away where the large clip was removed and the mini clip was repositioned. Needless to say, this effort was too late to save my vision. I thought, what could be worse. A world of unknown side effects began to unfold: sensitivity to loud noise, bright lights, balancing, hearing, headaches, large crowds. I can’t share the joy in sight seeing on road trips (it takes too long for me to see what everyone else sees) hiking with family, or going to sport games like the Seahawks football champions, concerts. The list goes on and this has effected my relationships with others due to the limitations. Oh, and there are times when my thinking is foggy. So, yes things are different, but the difference is new and we all have to make our “difference” the new normal.

Barbara I agree with excepting the NEW NORMAL. I have not responded to anyone’s post because my surgery went well no problems during the surgery in their words EVERYTHING WENT WELL. Yes, I am thank to God my Annie didn’t rupture, as you said the side effects of sorts mine are not as serious as yours. My list seem to be growing or I am just become aware of things stuttering is something I have begun to do, my thought process is different. I have ADHD, dyslexia so I am accustom to processing information differently, but it’s different then that. I now process things externally, I now have sensory issue I didnt have before, back round noises make it hard for me to focus, flashing lights, sensitive to touch. I have several good changes, I no longer stress myself over things I do what I can and move on. I stole a line from a song which I know use as my theme “If You Don’t Want/Like ME Then DON’T Talk To Me Go Ahead And Fine/Talk To Somebody Else”. I am more into building relationships with those interested in doing so, I no longer concern myself with how happy every in else is with ME. I am more concerned with being happy with myself and being the best me I can while helping others. I thought I loved me it took ALL of this to help me understand what loving oneself really is. The NEW NORMALS for ME and MY Family shows itself in many ways. I have epilepsy, skin and systemic lupus plus the Annie all of this was discovered from Oct 2013 - April 2014. It’s not fun but I am grateful to be blessed.