I had my aneurysm coiled a year ago. I have not had an angiogram since, only an MRA follow up 6 months afterwards (without contrast) I also had another MRA (again without contrast) a couple of weeks ago. I have not had the results yet.
Just wondering if in the UK that the follow up is different? I am getting odd pains in my head where my coils are situated and its now been a year. The pain does not last very long, then returns. I have recently been experiencing pain at the base of my skull. This is also on the same side as my coils.
I have now seen the ophthalmologist twice. He said at first there was a problem with the dents on both my optic nerves,which was caused either by a bleed, my pituitary tumor or my aneurysm coiling. On the second visit, he decided I needed further tests with electrodes placed on the back of my head. (I have a four month wait for this test) He said there may be damage to the nerves in my brain and this is what could be causing my vision problems and visual disturbances. I also have a problem with my peripheral vision and have been told not to drive.
All my blood tests are good so that's a relief but I am still suffering from this awful fatigue.I am also still getting odd turns. I have noticed sometimes, when I turn my head I feel peculiar. Just wanted to know if anyone else has similar.
So glad you gave an update about your follow-up appointment with the Ompthomologist -- although having to wait another 4 months in order to get the test with the electrodes?? that bites ! As for your peripheral vision, I know of others on the site who've also experienced the same problem either after rupture or after their surgeries....to my knowledge, this isssue has not cleared up for them, however stranger things have happened in the healing process. I'd honestly think that staying on top of the eyesight issues could only be a positive thing. The optic nerves and facial nerves can really take a battering , but from what i was told by my Ompthomoligist, the optic nerves are the first to heal -- quicker( and amazingly so) even after severe damage has (or had) been inflicted upon them. What may appear to be permanent damage may not be so permanent after all. Personally, I was fortunate and found that what the eye doctor had said was true, at least that was the situation in my case.
Are you able to follow up at all with your Neurosurgoun regarding your current vision issues or the peculiar feelings you get when you move your head a certain way? ? (sigh), I hope you get some answers very soon! Peace, Janet
We have 12 cranial nerves in each of our two hemispheres...you may want to research those...
The optic nerve (CN II) is our main, basic, vision. There are several other cranial nerves that relate, control, the muscles in our eyes, and, the reaction to light change... My memory never lets me name them readily/easily...Can you ask the doc which nerves he refers to? As I type...the one I remember is the CN III oculomotor...tho there are others, too...
There are also a number of vision (disease?)...one is called hemianopsia...that is on some of my records... and, I cannot remember the name of that nerve .right now...One neuro-doc put on oen of my records a term "quadrantopia"...vs hemianopsia...always a good guess on the highest skilled doc...for any diagnosis...
You may want to search: cranial nerves, and cranial nerve anatomy... those 12 nerves are so connected anatomically to our cranial arteries...it may help you in questions to your doc and in recognizing their explanations to you...
I'm 2 1/2 years now. I had an MRA at 3 months and one year and will get another at 3 years. I have coils and arterial occlusion for a giant aneurysm. I too still get pain especially if I reduce my amitriptyline dose. We think my pain is due to trigeminal nerve irritation from the coils/balloons. I also now get nocturnal migraine like headaches. I think in the UK we are much less likely to have to go for repeat angiograms than those in the US and the cynic in me suspects it is something to do with radiologist/surgeon income which is greater for an angiogram! The NHS is very good at avoiding unnecessary tests or doing the cheaper of 2 'equivalent' options.
Fatigue is my biggest problem too and I've retired. My vision has improved and I'm able to drive. It must be so frustrating for you to have this limitation. I get pain when I turn my head rapidly, go round a roundabout too fast, or drive over bumps. My theory is that it is the big lump of coils moving and pushing on adjacent structures. I've found the surgeon and radiologist aren't very interested in my 'minor' symptoms, and as a physician I can to a certain extent understand, they consider me a success as I'm alive, haven't had a massive stroke and am self caring. It is a success, but I'm hoping for a little more improvement with time.
Hello Eve...I am so sorry I haven't written you lately...this moving is really rough on me this time due to health issues...which you know...I wish you could get your test sooner than later...any excruciating and different pain in your head, seek medical attention. Keep us posted on how you are doing today...will write more later...Hugs out to you ~ Colleen
cranial nerve #6 has affected me. I see double, my eyes have improved 1 year post.. but I'm still seeing double and my eyes are Alittle crossed, though it's hard to tell at this point, thank goodness. Fatigue also affects me, finding that gardening is an excellent rehab for weakness and fatigue. hard to believe it's still happening after a year, but "that's the wway it is. one of my fave sayings, It is what it is!
Thanks for posting. Yes, its quite a while to wait 4 months but I am hoping now that things will have improved by then. My fatigue is better today.
I haven't had my MRA results as yet. I will have to call the neurosurgeons secretary again tomorrow. She makes me feel really uncomfortable calling her, she is that type of person unfortunately. I also haven't received any follow up appointment with the neurosurgeon either, to discuss the MRA results. I have mentioned this before to him and he said maybe vertigo!I know its not because I had vertigo many years ago and its nothing like it. Just feel like he is fobbing me off.
Thanks so much for all the info. I did read about it and printed it out for the ophthalmologist. I don't think I will get any answers anytime soon, not until I have more tests in 4 months time. No consultant seems to want to admit anything is wrong. I would just like to feel safe going out and not have to worry if my sight will go whilst I am out or if I will have an odd turn. I can cope with not being able to drive, its just not having my independence to travel or go out alone that concerns me more.
Thanks for posting. I had been wondering about the angiograms. I had an MRA ( no contrast) follow up at at 6 months and paid for another MRA ( no contrast) at the Queens in London last December or January of this year. Just incase my results had been misread again. I was told by the neurosurgeon here, (NHS) that I wouldn't need another MRA for another 2 years so I don't know why he authorised another scan just 6 months after my follow up? The neurologist at the Queens said he would prefer me to be screened every year. So it definitely seems to be all about the cost!
Its good to know you're vision has improved and you are able to drive. My fatigue is a lot better today. I am still waiting to see the neuropsychologist and I am hoping that will help me. I have noticed since my surgery, I make such simple mistakes, even just trying to add something up. I use to be so good at maths but now, I struggle just to work out which is the best buy, when food shopping!
I have found the neurologist at the Queens in London to be the most truthful. He said no one can be sure how anyone's brain is going to be after any type of brain surgery and he admitted he didn't know what caused my symptom in the days following surgery. I much prefer that, than be fobbed off with "its not connected to your surgery" and be left to feel at times, that my symptoms are all in my head!
I have been prescribed Tramadol for my headaches. The endocrinologist suggested this and I now have it on repeat prescription however the neurologist here, is not happy about me being prescribed this and doesn't want me taking it long term. Maybe it will be changed when I have further tests in 4 months time. If only they could all agree!
No worries! I totally understand. Moving is always such hard work but after out surgeries and health issues, I can imagine how difficult it must be and how you must be feeling. I hope you have a lot of help and please don't over do things. I posted to you earlier today.
Thanks for posting. How were you diagnosed with damage to your cranial nerve 6 and was it due to coiling? I have 4 months to wait for my test, which the ophthalmologist said involves placing electrodes at the back of my head. I have no idea what the test is called, only that it is to check the nerve damage due to my visual problems.
I have had two coiling procedures here in the UK to coil a very large aneurysm, the second time I also had a stent added to keep the coils in as the aneurysm had a very wide neck. I also get a lot of pain in the area of the operation site, particularly at night and when I get tired. I also suffer from a lot of brain fatigue since my last bout of surgery in January 2013 which can be very frustrating.
I wonder if the hospital where you had your treatment had a team of neuro-interventional nurses at the end of a phone line to readily answer your queries or to get you a response to your query from a consultant quickly and get back to you? I have found this really helpful when I have had problems but did not need to be seen by a specialist. It has helped to put my mind at rest or has provided suggestions for remedies to try which have eased the situation.
Given the level of pain I have since my last bout of surgery, my family doctor recommended using a memory pillow and that is really helping to ease the pain a lot when I lie down and I am finding that I do not have so much pain down my neck.
I had a sub-arachnoid hemorrhage, bleeding in my brain, from the aneurysm when it ruptured. This caused pressure in my brain, which I believe affected the cranial nerve. I'm lucky I don't have more deficits than I have. I was in Intensive care unit with a drainage tube in my skull to drain the blood for 23 days to help reduce the pressure buildup in my brain. The dr. told me my6th cranial nerve was affected just from the symptoms. I have glasses with prisms that correct my vision, thank goodness. I got my driver's license back after 11 months . My peripheral vision isn't very good but Ive got some wide vison mirrors on my side mirrors, you know the kind that look like fisheye lenses? I only drive on local roads and park way out where no one else parks just to be safe. I had a lot of pain in the back of my neck afterward too. a special pillow that supports my neck helps.I don't get pains in my head I'm thankful to say.
Did your aneurysm rupture too?I wouldn't think the coiling itself would effect anything, but I'm no expert. You said you have a pituitary tumor too? Non-malignant, I hope. I got MRA's @ 3mo, 6mo, 1yr then I think it's 2 yr. They say that's the routine. I wish you good luck, and keep the faith!!
I will purchase a memory pillow to see if it helps, thanks. No, there are no neuro nurses to answer any questions at the Hospital where I had my coiling. The procedure took place in May 2013 and had a follow up appointment early December 2013 with the neurosurgeon for my 6 month MRA results. Unfortunately, when I was discharged I didn't even have a discharge letter. When the nurse saw me bending, while I was on the high dependency unit, I told must not bend and just to walk around the house for the first two weeks. That was all the information I was given at the time.
I had an unruptured aneurysm on my right carotid artery, which is close to my optic nerve and also my pituitary tumor. I had no problems with my vision beforehand and my visual disturbances began immediately on waking, following my surgery. It was only when I traveled to London to see the neurologist there, I discovered this. Pat on this forum has sent me a lot of information too ( thanks again Pat)
The opthalamolgist has said my vision problems are either due to a bleed, coiling or my tumor. I wont know for sure until I have more tests in 4 months time.
Caroline has posted about a memory pillow, is that what you use? I am going to try the pillow to see if it helps.
Iv'e tried soo many pillows, I ended up with an old floppy one that I can squeeze it up high under my neck for support. Took me quite a bit of experimentation. That's too bad it has to take 4 months for you to get tested..that must be stressful and frustrating..waiting!
Eve...I learned, over time - post-discharge, that our Relax-a-Back stores have
a neck pillow that I have just cherished... also many others and I got them for under my knees...they have a multitude of styles...could view their data online...