The journey after the surgery to correct an on in unruptured aneurysm has been, still is, an interesting process. 1st of all I am blessed the aneurysm is gone the pipeline did its job. It has taken me a year to get specialist to acknowledge that the surgery did and has had after affects. I lost something’s 1. I have issue with processing things internally, it’s as if my brain can hold on to all of my thoughts and the overflow is processed externally.
2. I had ADHD before the surgery now my attention span is even shorter.
3. My short term memory is shorter
Things have changed oh and PTSD is now also one of the things into the table.
I know this list is much shorter then some but when you are told NO one has complained of sign effects after corrective surgery of a unruptured aneurysm that is a long list. I thought I was losing my mind until I was examined by sever doctors in the field of neurology.
Hi PJ - thank you for this! I too can find no one to confirm the changes post-op. But your message has now thankfully convinced me I am not imagining these changes, I am not slowly going mad. These changes are real. What puzzles me is why are neurologists/neurosurgeons so very reluctant to admit that things do indeed change post op.
Wow PJ, I definitely lost the short term memory thing. I have something in mind then when I go to address it I have forgotten half of it. I write everything down now. I just thought it was old age. I am 55 and I have had two pipelines with success.
I have some days where I am really tired, other than that I am trying to rebuild stamina and get on with my life. I work full time and have a tax and accounting business out of my home.
There is without a doubt brain changes that occur with any brain operation. I too have the pipeline. Been almost 2 years . I had a giant widemouth ani in my left carotid artery, cavernous sinus. I have lost partial eyesight and visual field diagnosed w optic neuropathy, permanent damage to optic nerve. But that is just a small part of it. I have nerve damage in the left side of my face going down to my jaw, balancing problems, flooding, overwhelmed, anxiety, and just beginning to come out of PTSD. I will never be as I was before. It’s been the hardest struggle of my life. But, I have gotten better w time and persistence. Don’t let anyone try to tell you getting the pipeline will have no side effects.
Wow - I am sorry for everyone having these issues following the pipeline. I have an unruptured 8mm posterior. I am also split 50/50 between doing just the coil or coil with PED. The neuro has not told me anything about side and post negative effects. I am nervous because of needing 6 months of Plavix with PED because I have an issue just taking aspirin. Thank you to all of you for mentioning your side effects. Hope everyone heals quickly!
dasis72 said:
There is without a doubt brain changes that occur with any brain operation. I too have the pipeline. Been almost 2 years . I had a giant widemouth ani in my left carotid artery, cavernous sinus. I have lost partial eyesight and visual field diagnosed w optic neuropathy, permanent damage to optic nerve. But that is just a small part of it. I have nerve damage in the left side of my face going down to my jaw, balancing problems, flooding, overwhelmed, anxiety, and just beginning to come out of PTSD. I will never be as I was before. It's been the hardest struggle of my life. But, I have gotten better w time and persistence. Don't let anyone try to tell you getting the pipeline will have no side effects.
I am sorry i didn't response sooner, I had a 13.5 ml unruptured aneurysm in left carotid artery, cavernous sinus which was repaired with a pipeline. The easiest part of all this for me was being ABLE to make the decision to have the surgery. The hard part was waking up thinking EVERYTHING was the same only to find EVERYTHING was different, how so? I am what I call a hobbyist i am very creative i enjoy photography, drawing, needlepoint, making journals, and sort of geeky. A week after the surgery i went to take a picture of by son on my beloved IPhone and couldn't remember how to make that happen it took me a 1min to take that picture. I had to figure out how to create/make a journal this is something I had done many times. I haven't taken a good photo in sometime. My drawing has become more creative I think that has come about because its's easier to express, release my frustration. I have this thing I call external processings, I find it harder to process things in my head. I get headaches in some cases I have had seizures because of the overload, something like a computer crashing, yes I have Epilepsy and they think PTSD could being causing the break thru seizures. Most things that i do on the right side requires thought, did i mention I am right handed, no i didn’t have a stroke. These are the things NO one mentioned was a possibility. I understand these things are nothing compared to so many, but when you are told if the surgery goes well you can expect TO BE fine. That is the thing that makes it hard no one acknowledges there can be, will be things that will not be the same. So you walk around feeling crazy, off balance physically and angry because you feel no one is listening. One morning God helped me to see and understand that DOCTORs are not the beginning or end to nothing. I emailed the Neurologist made appointment which my sister accompanied me and explained what she saw and how she saw it. I made appointment with a neuro-psychologist who tested me for 10 yrs to tell me what i already knew. My attention span is VERY short, I have issue with my short term memory, oh yeah he also said these things could be apart of the reason for the external processing issues. I am still here and able to do what i can the way i can do it as long as God allows me to and gives me what I need to create away to do what i want and/or need to do I am going to make it do what IT can do... That is not to say i don't have bad days it's to say I am thankful
I had 2 pipelines put in behind my right eye in May 2017. I had a 12mm widemouthe annie. I immediately suffered memory problems and sleep problems. I am allergic to the Nickle in the stents. I was already on prednisone for a chronic illness. I am finally tapering prednisone and having cramps in my head where the stents are. I have a doctor friend that says whenever your brain is fooled around with like that a bit of brain damage happens. What I would do for sleep!!! I work 40 hours a week, am in chronic pain from autoimmune issues and stress from my cognitive issues. I have no quality of life. I live alone and have no support. Could not afford life insurance this year.
You can get support here, the members are wonderful! I understand chronic pain not related to aneurysm. It’s not fun. I would strongly suggest you find a therapist in your area, perhaps a Neuro therapist. Think about the positives you have, list them, look at them every day. Some things may not seem like a positive. You are still able to work. You are able to have contact with people. You can get on the Internet. Some things we forget to add as a positive, having a place to live, clothing, food, income, ability to care for self. Another thing I would suggest is to become active in a group, be it church or temple, or if religion doesn’t appeal try a hobby you’re interested in -woodworking or carving, crochet, knitting, reading (our library has lots of different groups). Try volunteering at a local facility- a food bank, Habitat restore or building, convalescent hospital, the list goes on. Someone mentioned in another post that time is our friend when it comes to healing in our brain and I couldn’t agree more! Therapy can help with pain management, help set goals both short and long term. Most insurance will cover several hours a year with a therapist. I look at therapy as a way to find a path, whether it’s building a bridge or a new road to going around issues. There is no shame in having someone help you. Hang in there!
I should have mentioned that I couldn’t afford health insurance this year. Scary, with two auto immune conditions, my brain, ptsd, chronic insomnia, IBS-C, toxic metals and leaky gut.
Hmmm, hospitals used to have to treat folks who walked in the door and the lack of money couldn’t be an issue. There was no good way for them to collect. But now those trips can be sent to the bill collector and effect your credit. There is emergency Medicare and Medicaid if you end up in hospital. The hospital SW can help with the paper work. You might want to see if you qualify for regular Medicaid or Medicare. The worse they can say is No, but it’s not much cheaper than private pay and it doesn’t cover as much.
Hmm, my copay at work would be 800 a month almost half my salary. I’m high risk because of brain surgery. I can get crap insurance for 500. No thanks. I don’t think an er would do a screeniing angiogram. I make too much for Medicaid and not old enough for Medicare. I don’t mind dying, just ending up a vegetable with no one to care for me scares me.
My Medicare is about 40% of my SS disability and I don’t think that counts the supplemental. I forget. I don’t handle money or bills anymore. I almost paid the guy twice who came out to clean and seal the chimney. Luckily I wrote down the check number on the bill. I’m frustrated with the high costs of insurance as well. I paid private insurance for about six months before I went to my GP and the front desk refused to let me see her. The private pay wouldn’t cover it because I was receiving Medicare. I didn’t know it, we had not received anything in the mail. When I talked to the private pay, they refused to reimburse me. I think if we all wrote our Congresspeople and Senators about the outrageous cost of insurance, maybe they would hear us.
THANK YOU, I do not feel alone, i thought too that I was abnormal. I had two PED in 2017, a TIA in 2018. The doctor told me everything went great, post exams show everything is great. However, I have symptoms since my first PED that have not go away. Brain pressure that can last from minutes to hours, it affects my vision, I feel that I may pass out, i get tired easily, concentration issues, I also have to write everything down because i may forget it (like 4-5 digits numbers/ streets/ codes and small conversation details). I noticed that after certain stress situations and certain type of exercises (yoga, weights), i will have the brain pressure. My neurologist just told me that she thinks the nerve/muscle may have been touched/damage during the surgery. the symptoms may be for life. she offered me medicine for the brain pressure. I do not like the symptoms but it feels a relief to know the cause that may cause it and that i am not crazy.
