Hello Brave People!
New in the forum, approved this day! Ruptured BA in Sept 2011, they said I was the 3365 person to have the procedure( in the world), so over the years have had to try to get by with trying to live life like I used to, cannot be done…
I am so glad to be in this forum, the stories have given me courage and hope! Yes, I have quite a few after affects, but, I am thrilled that others know what I’m feeling. I have been afraid to ask elk my family because I have had to just maintain, but, seeing everyone on here, you can relate and I am so happy! I can do this!!!
1 Like
I agree, cooking is challenging even for simple recipies; and music is mandatory!
3 Likes
I had a ruptured aneurysm that was coiled. I was an avid reader, several books in a week, when I had the time. It took me over a year to be able to “read” again. Don’t give up hope as it may return!!!
I had a ruptured aneurysm in the vetebral/PICA which is brainstem artery almost 5 years ago. Like you, after discharge, I had numerous changes to my senses from sound, light, sense of vibration, balance, vision issues, vertigo. Initially, my Neurosurgeon and Neurologist told me that these issues will pass. Some issues did resolve itself naturally but other issues which became a disability remained. After consulting with numerous physicians (ENT-Neurotologist, Ophthalmologist, Neuro-Ophthalmologist, Neuro-physical therapy, Vascular Neurologist - Stroke Expert), I have diagnosis and treatment for most of my issues from my hearing (single sided hearing loss, tinnitus), my balance (40% drop in vestibular function), vision (oscillopsia, double vision, convergence issue). All these issues stem from the aneurysm rupture and bleed where stroke expert found that I did suffered a minor stroke (infarct) in the brainstem in the AICA region. However, one issue still remains which affects my vision which is a medical mystery. I have issues with contrast sensitivity (poor vision in low light conditions), visual perception (certain colors look vivid) and visual disturbance (glare/halos from LED lights). These issues give me real problems. After the medical community could not give me answers, I went to academic vision clinic at major university. As these issues are typically retina and lens issues, they conducted a deep retina examination (normal eye doctors don’t have the testing equipment) which discounted the retina and pointed as a cerebral problem. It is a mystery and it was sudden after my hospital discharge almost 5 years ago. I am hoping to speak a vision neuroscientist at the University as I had no answers from the medical community. Since you don’t have medical insurance, I have you sought help from Neuroscience community at university. I had unusual hearing issues where I had problems with sound locations. No answers from the medical community but received a sound explanation from Audio scientists at the university level. Good luck. Unexplained issues are very frustrating. It is an itch on the back that you can’t scratch.
I am 4 years post aneurysm rupture. I still have problems with memory and staying on task, but the reading problems you describe were very similar to my own for about a year. I am much better now, and rarely have to back up pages to remember what it is I read the night before. Keep trying to read. Practice makes perfect!
1 Like
I am 4 yrs post ruptured, coiled ani 9.7mm. I also experience the halos and see spikes of light emanating from any light source at night. I absolutely do not drive at night and if were forced to so, I would be wearing non-glare sunglasses. (And non-glare bi-focals have helped so much with watching TV. The brightness of the TV is set at the minimum, which is not great for other family members, but it’s the only way I can watch a show. There is a “new normal” that doesn’t feel normal, but it does eventually.
Thanks, I will keep trying.
Me too with the movies. It’s actually great I get to watch the good ones over and over
Hi, I had tremendous hair loss after my coiling and follow up angiograms (3). I have taken Biotin and Zinc, as recommended by a dermatologist. You may give it a try, I saw improvement.
Hi Jackie, as you are the only other person who sees this unusual visual disturbance post aneurysm rupture, I have more to share. In my case, vertebral/PICA artery that ruptured. I suffered a minor stroke (infarct) in the brainstem in the AICA region. After consultation with numerous physicians, I was diagnosed as Central Vestibulopathy which results in chronic vertigo and imbalance. Thankfully, I have a treatment now so the vertigo is bearable. I also have double vision and single sided hearing loss which has been explained to me. However, the visual disturbance of my night vision (halos, starbursts, poor night time vision) has been a mystery to my physicians. I have seen my regular Ophthalmologist as well as two Neuro Ophthalmologist where I have not received a diagnosis. They explained that usually this type of visual disturbance is attributed to ailment of cornea, lens, pupil or optic nerve. It is why some cataract and Lasik patients have these issues. In my case, my physical eye has been tested by these physicians with no apparent issue with the physical eye. Frustrated, I consulted with a Vision Scientist at UC Berkeley. He ran a deep retina EEG examination which did not reveal any issues with retina; however, another test did reveal that I have poor contrast sensitivity (CS). My previous physicians attributed my poor night vision as high Myopia (near sightedness); however, I explained that after my rupture, it was like a switch was turned off just like my tinnitus and double vision. The vision scientist concluded that the poor CS is like someone in their 80s. Like you, I need to wear (Yellow - Night vision googles) which does help with the CS in foggy or night conditions.
I have some questions to ask. Where was the location of your rupture? Did you suffer a stroke as consequence of your rupture? What did your Ophthalmologist diagnosis your issue? Did he discount the physical eye like in my case? I am sorry for the questions but I am trying to solve my medical mystery. I have seen physicians at 2 top research hospitals but I still do not have answers.
My ophthalmologist says the halos and starbursts are a brain problem, not an eye problem. I’m sorry you experience them and wish you could totally avoid driving at night. I hope your double vision has been eliminated through the use of prism glasses. I think I had to wear them for at least 6 months, but I’m not sure of the timing. So many aneurysms form near the optic nerve, making aneurysm treatment difficult. I skipped having a follow-up of any kind in 2018, so I’m a bit foggy on all the details, but it was a posterior communicating artery aneurysm that ruptured in July of 2018. I didn’t know a thing until a few days after it was coiled. I didn’t have a stroke, though I did have a couple of seizures that weren’t too exceptional. I think they were caused by the SAH. There was lots of talk about the amount of blood that was pooling in my brain.
I also have tinnitus and use a white sound generator at night to sleep by. It seems to be very helpful. You might not ever rid yourself of every side effect, but you will do much better mentally if you simply accept these irritating additions to your life as the “new normal”.
Wishing you the best.
P.S.
Sorry, rupture was July 2014, not 2018.
We have to remember to be thankful that we have lived despite this horrible occurrence.
For the first year post-rupture I thought of virtually nothing but the aneurysm and the limitations it imposed. It was such a life-changing event that it was difficult to even grasp the reality of what happened to me.
1 Like
LOL! Yes, every movie is new to me, too!
I guess you aren’t going to improve with your reading after 10 years. I am sorry to hear this. It helped me to tell my husband everything I could remember from a book that I was reading at breakfast the next day. After 4 years I rarely have to go back and re-read the last few pages to figure out what the book is about.
I wish you the best.
Hi Jackie, thank you for your reply. It was very helpful. In your case, the halos and starbursts makes sense as I understand, the PCA supplies the occipital lobe which is the central visual cortex. But, in my case, my aneurysm burst in the brainstem far away from the occipital lobe so it is a big mystery to my physicians. I also have tinnitus which is explained by my physicians as the rupture occurred near the auditory/vestibular nerve which caused auditory loss in my right ear. I have acclimated to the tinnitus except for a few episodes where I have total deafness associated with the severe tinnitus which last for a few seconds.
Thanks again for your reply. It was helpful
Jackie,
Yes. We have to be grateful to be alive. My rupture occurred in April 2014 so we both have our Annieversary coming up. Like you, during the 1st year post rupture, it was difficult. I went back to work prematurely where the post rupture disabilities hampered my ability to do my prior work. I concentrated on my Neuro-PT which resolves my issues with balance, my double vision and hearing loss. Currently, , I am working on binocular vision therapy on reading which is extremely challenging but pushing forward.
Good meeting you on this forum.
1 Like
I also have some balance issues. My 4 unruptured aneurysms were fixed with 5 pipeline stents in 2016. I notice after showers I have to rest a bit before walking around. Also the cold makes my legs feel like wooden boards. Strange but maybe my new normal. All I can say is I’m thankful I’m still around.
Random thought for you MiMi – I’ve been told repeatedly by more than one PT specialist that taking a shower is one of the most fatiguing things you can do.
Stop and think about what you’re doing in the shower. Standing (well, hopefully you have a shower chair) on a wet surface with water pouring down on you while you balace, soap up a washcloth, twisting and turning to scrub every inch of body (even the really hard to reach places) and then shave awkward places or wash hair with your hands over your head.
Really? Does that sound like a relaxing thing to be doing? Especially on a slippery surface with soap? Honestly it sounds like something that should make you tired!
azurelle
3 Likes
At first, I panic anytime a got dizzy after a shower or whenever the weather change, but now I just wait for a few minutes before a continue with my day. Is hard to “adjust to the new normal” but just be patient some of the symptoms after surgery eventually go away while others become may be part of your life. stay strong and don’t panic. good luck to you mimi
2 Likes
You might want to try taking a cooler shower, not cold but more around body temp. Hot showers lower your blood pressure. They can also be a trigger for cluster headaches.
1 Like
that is a good tip, however, in my case, the water temperature does not change anything. but it does not hurt to try.
Thanks
1 Like