I was wondering if anyone would be willing to consider sharing post procedure experiences with an aneurysm repair done vascularly with coiling. I am also sorting through other health issues and wonder if 3 weeks after one still experiences extreme fatigue, and how long the fatigue from an aneurysm repair lingers on. I am scheduled to go back to work in a week, and am wondering if that is realistic. I see the one month follow up with the surgeon next week and a new GP this Tuesday. A naturopath gave me a clinical diagnosis of lyme (which actually can be linked to aneurysm), an infectious disease Dr. says no (negative blood tests) and that all my symptoms are likely due to the aneurysm (yeah right). Also wondering if anyone else came through the experience with a whole new texture of gratitude and awareness of grace. Thanks for any input re: fatigue. Hope your journeys are flowing spectacularly.
I had a ruptured aneurysm on Dec 23, 2015, just about 3 months ago. My doctor wanted me off work 3 months so will be returning at the end of the month. I did have a lot of fatigue early on but it seems to be getting better. My energy level has suffered as well. I have no real major complications, but do see some issues with mood and irritability at times. I guess that is all part of the recovery process.
Mine was unruptured and had the endovascular coiling procedure. It’s been just over a month since it’s been done. I’m still tired. When i got home i noticed the left side of my face felt like cold water was running through it. Sometimes at night just after i fall asleep I wake up in a panic because i think I’m dying because my head decided to become active with some awful sensations. It’s very unsettling.
Dymond,
I am totally beat three weeks after my coiling, which I think maybe caused by Plavix, but like you I have another health issue which could also be contributing to the exhaustion. In my case I have to go back to aqua PT if I want to improve and regain strength. I also belong to a FB group called GoT Endorphins which I find helpful-full of info- because the members all have auto-immune disorders which have been ameliorated by a novel drug protocol called low dose naltrexone. It worked wonders for me.
Last year at this time I was unable to walk unassisted. My pain level was off the charts-with no diagnosis to explain it. At the same time I was wrongly diagnosed with an h pylori infection and given drugs that turned my stomach into a blazing inferno-I looked and acted like a mad woman when my husband brought me in a wheelchair to the ER. For some unknown reason the attending doctor sent me for a head CT scan, which clarified nothing, but found an 8mm cerebral aneurysm incidentally. LOL, I literally was so sick at this point I had a flat reaction to this shocking news.
In this journey I have learned that chronic and unrelenting pain alters your ability to think clearly and manage your life. I had no clue about this until I was personally knocked down and out by Reflex Sympathetic Dystophy/Complex Regional Pain Syndrome. Taking a bath, became a marathon event that required the assistance of two people, a space heater and heated towels. The pain it caused me was off the charts-my feet felt like bags of broken bones. My skin felt every touch like shards of glass. A breeze blowing over my feet was torture.
I feel incredibly lucky that my RSD was diagnosed late and not treated, because I avoided becoming addicted to opiates and I found a treatment that tricked my immune system into healing itself. Once my walking returned and my pain levels fell I could think about treating the aneurysm. I believe that without the RSD the aneurysm would never have been discovered. I feel tired, but I know I am incredibly lucky.
Oh my goodness! Nothing like a perspective on a life with much larger challenges to put it all in perspective, and ideas for questing further. Thank you so much for taking the time to tell your story. Grateful with the cat purring on my lap.
Campanile said:
Dymond,
I am totally beat three weeks after my coiling, which I think maybe caused by Plavix, but like you I have another health issue which could also be contributing to the exhaustion. In my case I have to go back to aqua PT if I want to improve and regain strength. I also belong to a FB group called GoT Endorphins which I find helpful-full of info- because the members all have auto-immune disorders which have been ameliorated by a novel drug protocol called low dose naltrexone. It worked wonders for me.
Last year at this time I was unable to walk unassisted. My pain level was off the charts-with no diagnosis to explain it. At the same time I was wrongly diagnosed with an h pylori infection and given drugs that turned my stomach into a blazing inferno-I looked and acted like a mad woman when my husband brought me in a wheelchair to the ER. For some unknown reason the attending doctor sent me for a head CT scan, which clarified nothing, but found an 8mm cerebral aneurysm incidentally. LOL, I literally was so sick at this point I had a flat reaction to this shocking news.
In this journey I have learned that chronic and unrelenting pain alters your ability to think clearly and manage your life. I had no clue about this until I was personally knocked down and out by Reflex Sympathetic Dystophy/Complex Regional Pain Syndrome. Taking a bath, became a marathon event that required the assistance of two people, a space heater and heated towels. The pain it caused me was off the charts-my feet felt like bags of broken bones. My skin felt every touch like shards of glass. A breeze blowing over my feet was torture.
I feel incredibly lucky that my RSD was diagnosed late and not treated, because I avoided becoming addicted to opiates and I found a treatment that tricked my immune system into healing itself. Once my walking returned and my pain levels fell I could think about treating the aneurysm. I believe that without the RSD the aneurysm would never have been discovered. I feel tired, but I know I am incredibly lucky.
Janel,
Thank you so much for the information! Particularly the mood and irritation. All my best as you journey forward through the flow of life and grateful there have been no major complications for you!
Janel said:
I had a ruptured aneurysm on Dec 23, 2015, just about 3 months ago. My doctor wanted me off work 3 months so will be returning at the end of the month. I did have a lot of fatigue early on but it seems to be getting better. My energy level has suffered as well. I have no real major complications, but do see some issues with mood and irritability at times. I guess that is all part of the recovery process.
Laura,
Thank you for the fatigue feedback, and also the sensation feedback. I hope the panic issues clear-I have something not so much as similar, but somewhat related, where I seriously wonder if I am going to be around for much longer, and I have never had that sense in my life, and wonder where it comes from and what is causing this.
Laura said:
Mine was unruptured and had the endovascular coiling procedure. It's been just over a month since it's been done. I'm still tired. When i got home i noticed the left side of my face felt like cold water was running through it. Sometimes at night just after i fall asleep I wake up in a panic because i think I'm dying because my head decided to become active with some awful sensations. It's very unsettling.
Dymond, fatigue is very normal, not the kind of fatigue from working hard all day, but extreme fatigue. It takes a lot of energy for a brain to heal, a lot. I was diagnosed with Lymes for over a decade. I have had arthritis for four decades. A lot of members who are coiled return to work between four and six weeks from what they shared.
I am not a doctor, but respectfully, I would go with what your doctor is saying. I have never read any studies indicating a link between Lymes and cerebral aneurysms. But I have read medical research between childhood head injuries and aneurysms though the studies did not show a strong significance, there was some significance. I would be interested in the studies relating Lymes to aneurysms, if you could post the links that would be great.
My surgeon explained that for me, it takes a while, think in months for my brain just to get over the anesthesia. To combat those effects, I keep hydrated. To help my brain heal I had to increase protein. If you look at healing in the most basic sense, we need our brains to keep our body functioning - all the organs, bones, muscle, etc. - it’s responding to messages from our brain. So the body sends all the resources to the brain for it to heal. If we have poor nutrition, it greatly effects the other parts.
I ruptured so my body had an incredible amount of downtime which certainly isn’t helpful to arthritis. I built my body back up by walking and using small hand weights, also a lot of stretching exercises. Tramadol which is what I was on about a month after going home, makes me feel like I have the flu, so I don’t take it. I’d rather get on with life then to focus all my energy into diagnosis. For me it’s okay I ruptured, I had another coiling - brain is ok, I got a few ticks on me - treated and have side effects, got hit by a drunk driver 15 dislocated vertebrae- arthritis. I have done everything within my control to deal with the diagnosis. Life lessons learned early. So now I focus on what I want the rest of my life to be like. One day I will learn to walk around hurdles instead of jumping them, but I don’t see myself ever balking and refusing a hurdle.
Many members have shared they found religion after rupture which isn’t amazing, humans need answers to that which they cannot find an answer. I left religion years ago but never my spirituality, that stays with me. It’s comfortable, like a beloved soft old sweater. If I look back at my life, I could say that all my past experiences have prepared me for this experience.
All you need to do is set goals. Campanile and others have posted about getting your sleeping habits and other habits back in rhythm. Start walking a little every day, make sure your sleeping at night and decrease the nap time during the day. Talk to your doctor about proper nutrition and any dietary needs you as an individual may need. Good luck!
Oh and when responding, just reply to the discussion itself, not each individual, it makes it easier to read…
Moltroub - THANK YOU! Here is the article in relation to aneurysms in the carotid artery in relation to lyme disease. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170070/
I researched this because my brother in law told me a friend had headaches for years, and it turned out she had lyme disease and aneurysm in both her right and left carotid artery.
Thanks for the protein tip! I usually don't eat meat, but decided to integrate grass fed beef once a week. I get a lot from seafood, eggs, nuts. Right now, nutritionally, when I have been questing health, I have been flowing with what the body wants, and research I've done: right now - no dairy, no gluten, no sugar, no caffeine, organic veggies and low sugar fruits, nuts, seeds, no alcohol except when I go out to celebrate. Not religious about it, and will eat gifted food. Added a bunch of supplements/herbs as well. This right action has now brought me out of "It feels like I am dying"
Also - I put religion on the shelf 30 years ago - transformed my life. With that said, had a deeply spiritual experience and came out with a new formula for living. Nice awareness expansion of the wonder and beauty of the cosmos, and awe: gratitude + grace (in the container of now) = balanced flow.
Re: the lyme journey - if I trusted my first GP, there is a good chance I would be dead. I had to argue with him about the headache issue and he complained about the cost of the tests. In 2013 he told me an MRI would rule out a brain aneurysm when I told him my uncle died of a brain aneurysm (I'm 56, he was 59 when he died).
This is the lyme journey..
Dr. #1 - my attorney, a boss, knew someone with lyme, encouraged me to explore this - he has a family friend who had undiagnosed lyme for years and said my symptoms were like his.
I tested positive and was treated for Lymes. Now have four aneurysm’s. It was in the back of my mind if it was a result from this???
Thanks for the link.
Tacoma - you are welcome! The naturopath I visited gave the prompt to treat the vascular system to support it. I am flowing with help from a Dr. in chinese medicine, but want to read about what would give it support nutritionally and such. Are they watching the aneurysms or do they plan on treating it?
I’ve had three surgeries. Another surgery coming up to add more coils to the second one . Then I have to get checked periodically for the fourth smaller one.
oh my goodness! You poor thing!!!!! So, so, so, so sorry you are going through this. I hope I don't have to add more coils and I have a lot to be grateful for that it was only one. Was there any family history for you Tacoma?
Only an uncle…
That’s why I have always wondered a bit if Lymes had anything to do with it.
I had an uncle as well...and he lived hard... I worked way too much over the past 20 years, but 50% of it was doing what I love to do... I think genetics might play a role, but definitely the bacterial infection from lyme and co-infections contributes.
My Dad had an aneurysm that leaked once or twice so I don't know whether to call it ruptured or unruptured - we were confused at the time what was happening! This was a year ago that he was operated on with stent and coils and he still gets tired now. Bearing in mind, he's 65 and he's lived a hard life so he's going to be tired anyway. He still gets dizzy and headaches as well. But he has his good days and his bad days. Sometimes he feels like a light has been switched off and he just has to go to bed to rest.
Hope you recover well, it's all a learning experience, for sufferers and carers and family. xx
SummerGirl,
Great description “…feels like a light has been switched off.” I say I am powering down and then I crash.