I developed pain and double vision due to a giant cavernous carotid aneurysm in 2011. I discovered these giant aneurysms are quite rare and found my neurosurgical team could not give me much information about success of intervention/surgery or what to expect during recovery. When I didn't recover quite as fast as I expected I turned to the BAF forums to find the experiences of others. I thought it might be helpful to start a group to share experiences, support each other and to provide a place of contact for those diagnosed in the future.
Hi Judith I have had vry similar experiences here in SA.notgood news when told it is not operable but so far have learned to live with it.it will be great to tell my story of the last few years and hear of others.les
I, too, was diagnosed with a giant. I have posted in other places here about it. I was lucky that I had a symptom of a drooping eyelid and pain behind my right eye. I still can't believe it didn't rupture! I am 7 months into my recovery (I had coiling and occlusion) and due for my follow-up MRA. The only problems I'm having now are still some tiredness (I often still need a nap after work and am not strong enough to do much lifting and carrying), a bit of intermittent pain behind my eye every once in a while, and my vision is not 100%, and may never be. But it is much better. I can now read hardback books, just not paperbacks. I am not on any drugs. Thank goodness for that! The plavix and low presser really did a number on me. I felt better as soon as I was off them. Being depressed during recovery really sucks big time.
I hope we can be of help to any folks who need us.
My reading suggests giant aneurysms are less likely to bleed than smaller ones, probably because the fact that they have got so big without bursting indicates they are a type of aneurysm with walls are pretty elastic and stretchy. Also front aneurysms are less likely to bleed than ones at the back of the brain. Where is yours? Have you any symptoms?
I developed vertical double vision, tiredness, forgetfulness and headaches and it was the double vision that led to the MRI. As the symptoms were worsening by the week indicating fairly rapid enlargement the neurosurgical team were quite keen to treat as soon as they could. Thankfully mine was in the carotid in a place that could be coiled and occluded without damage to the blood supply to the most important bits of my brain.
I empathize with you, especially as you have been told intervention is not possible.
You and I are at about the same stage. I too am 7 months from coiling and occlusion. My pain got worse after the procedure and we eventually decided I had a new pain that was in part irritation of the trigeminal nerve probably by the balloons used for occlusion. I still get pain everyday, worse when I do a lot of thinking! Amitriptylline nearly controls it. My double vision has almost gone, just if I look up or am very tired. The fatigue is still quite a big problem, especially in situations where there is a lot of mental stimulation e.g. conversations, meetings etc.
Sorry to read you have had some depression. I've been OK so far.
I was diagnosed with giant cavernous cartoid aneurysm in Feb. 2007. It was treated with stent and coils, subsequently recoiled in Sept 2007 and Feb 2010. I presented with dropping eyelid and double vision, it was variable and fatiguable and was diagonosed as occulary mysthenia gravis in April 2006. That is a neuro muscular auto-immune disorder. Treated for that until January 2007 when left side headaches got bad and medication no longer worked, when they discovered the aneurysm. I returned to work after 8 months off. Double vision improved significantly,it remains in up and downgaze and left; so I have very few impacts these days. Continued to see improvement for over a year. After the last round in 2010 I have lots of tingling, numbness and some nerve pain on left side of my face but not enough to need medication. I can't believe it has been over five years. It was difficult for awhile, but gradually I regained my confidence and my family began to worry less about me. We have all grown from the experience and for that I am grateful.
I have never shared my experience on internet forum. Glad you started it Judith.
Welcome. I had variable double vision too and my ophthalmologists were also suspecting myaesthenia gravis. I think they arranged the MR of my brain and orbits just to reassure me! They were surprised when the aneurysm was found. I too still have double vision looking up, but at 7 months after coils and carotid occlusion it no longer interferes with life. It is wonderful to be able to see the beautiful view from my windows again. I'm attempting a return to work today. 3 hours 3 times a week. I tried in April, but wasn't ready so have had another 2 months off.
It is good to find others with similar problems and find out my slow recovery is not that unusual.
Welcome. Is yours in the cavernous sinus? It sounds so much like mine. Mine was fusiform rather than saccular, and we decided PEDs would be hard to get in place and would be likely to move. As it didn't involve any significant side arteries, we went for the more traditional form of treatment and so they loosely filled the aneurysm with coils then blocked off the carotid artery inflow. They felt it likely this would be a definitive treatment and 3 month MRA showed no flow. I don't have to have another MRA for a year and that is I think mainly to check I don't develop any more aneurysms with the change in blood flow. So, 'successful' treatment, but I have been left with memory and cognitive problems. Much like those who have had SAHs describe. I hope your angio next week brings good news.
I agree, is is so good to find others with similar problems. It makes me realize I'm not so unusual and the things that are happening to me are not unexpected.
MY Annie is in left carotid artery in cavernous sinus also. 16 mm. I had Ped insertion done May 2012. So far so good. I had dizziness. That’s when it was discovered. I was told the location of mine was rare and usually only seen in people with a head trauma. I’m 41, no head trauma. Must have been slowly growing from birth they think. The ped was the only option for mine. Success so far except the plavix and aspirin do a number on my stomach. I can’t wait until Oct 1st for follow up angio. Hopefully it’s gone!!
I have been diagnosed with occular eschemia and neovascular disease. The doctors have ruled out diabetes and carotid blood flow problems. I am still convinced it has to do with my aneurysm. I am almost blind in one eye and even with surgery I will not regain sight. My other eye also has the same problems. The doctors do not know what is causing this. Has anyone had this problem?
Hi Lisa. I haven't heard of this problem post aneurysm so I'll be interested in any replies you get. Losing your vision must be tough after all the other things you have been through. In diabetic retinopathy they use laser treatment to the retina to prevent progression rather that curing it. Have you seen an ophthalmologist and has that been considered for you? Judith
Yes I am seeing one.He wants to do PRP laser to stop the progression. He is baffled by what is causing this. He told me it could be something going on he can't see with the tests he does. I am beginning to wonder if it could be some disease causing my other problems too and not anything to do with the ang's. I will keep you up to date. Thanks for your reply.
Where were your aneurysms (which artery), perhaps their presence or the treatment of them has affected the retinal arterial supply. New vessel formation in the retina happens when the retina gets short of oxygen, usually an arterial supply problem. Also, there is something called Terson's syndrome which is retinal or vitreous haemorrhage associated with subarachnoid haemorrhage (i.e. burst aneurysm). Is your ophthalmologist used to treating people with neurosurgical problems? If not, it may be worth getting him or her to talk with your neurosurgeon about the findings.
Left Parasellar internal cartoid artery. I'm not sure if he is used to treating neuro patients or not i have only seen him twice. He does seem vey concerned. Unfortunely I have not had the funds to have a follow up angio or see my surgeon since the procedure. I have to go to the emergency room if I get concerned. I willl check out the syndome and see if it fits with my symptoms. Thanks so much for your help. My sister has been looking after me and she is insisting I go to the ER. I might have to go even though I hate being treated like a begger at the ER.
My brother, who is 21, collapsed and was taken to the hospital 7 days ago. So far, he has gone through two surgeries and has been in a medically induced coma since. He had an intracranial fusiform brain aneurysm that ruptured many times. It was 2.5 cm. They had to perform an occlusion and bypass. Is that common for patients with large/giant aneurysms? I can't find much information on the procedure. Most sites don't even list it as an option, so I am assuming that it is rare.
Hi. I had a 3 cm fusiform giant aneurysm in teh carotid artery. I had tests of the circulation and it was found that enough arterial blood got across from the other side so they thought it safe to occlude the feeder artery and coil the aneurysm (too deep to get at for clipping). If I'd failed the angiogram tests I'd have needed a bypass to preserve the arterial blood flow to the rest of the brain on the side they were planning to occlude. Giant aneurysms are rare (probably less than 5% of aneurysms) Fusiform are rarer still ( most are saccular i.e. little bubbles on the side of an artery or at a branch point rather than the sausage shape of a fusiform aneurysm). I haven't been able to find out what causes fusifom aneurysms, probably because they are rare they haven't been researched as well as saccular ones. There is a suspicion they are a developmental abnormality, which might be why they are seen more often in young people.
7 days is really early in the brain recovery time, so don't get too worried at this stage that his difficulties with thinking will be long term. Most of us find it takes months or years to get full function back and some of us will be left with long term difficulties. Research shows recovery of the brain is much better in young people, so your brother has youth on his side.
I'm sure it must be hard for you as a carer at this early stage, when there doesn't seem much you can do that will help, but from his point of view having you around, knowing you love him, being someone who is helpful, encouraging and supportive is really good.