I have been having intermittent double and blurry vision- about 4-5 times per day. After seeing 1 optometrist, 3 ophthalmologists, 1 neuro-ophthalmologist, 2 types of MRIs (with and without contrast) and an angio-CT scan… I have been told that I have CCF.
Of course, Google is a very scary place for reading about medical issues. The one thing I am happy about is that I have only had this issue for 3 weeks. I’m seeing a neurosurgeon tomorrow to set up surgery (?) maybe- I think that is when he will tell me my options.
Was wondering if anyone has had experience with this issue? What kind of questions should I ask the surgeon besides the obvious-
what are my options?
How successful is the treatment plan?
What is the recovery period?
What else should I worry about?
Can I fly later? Not planning on flying but I know that eye problems can be exacerbated by changes in altitude…
Of course, this is the last thing I need. I’m in the middle of changing jobs, trying to close out tasks at the old job, finish annual training, clean and pack my desk… It’s not like I have nothing going on in my life. This has forced me to take a leave of absence from school as well as it has been hard to write anything on my dissertation when I’m having visual difficulty. argh.
thanks for the help.
P.S. - Having a slight pity party here because I can’t do it at home due to the hubby freaking out about the words
“… suggestion of a medially projecting 7 mm aneurysm from the left cavernous ICA”.
Trying to keep him on the happy emotional path due to his chemo treatments.
@ChuckleDoodle - In June of 2011, they discovered a 2mm x 3mm aneurysm that “arises from the anterior gene of the cavernous left ICA inferior to the origin of the left opthamalic artery projecting medially”
Scared the crap out of me. I met with a neurosurgeon and he said we should keep an eye on it. They looked again in Nov of 2014 and there were no changes and don’t want to see me again in 2019.
I really like and trust my neurosurgeon. These surgeons are so darn smart that sometimes they forget that us lay people can become quite scared when they use their neuro “speak” as though it is common everyday language.
My daughter had a traumatic brain injury with bleed. During healing, she developed pulsating tinnitus. Turns out she had multiple small fistulas ( I forget the technical term for hers). They found them with an old-fashioned angiogram since the CT angiogram didn’t find them. She had the exploratory angiogram and then the interventional procedure, which involved inserting 14 coils into various small blood vessels.
The neurosurgeons who saved her life initially were amazing. The interventional neurosurgeons who dealt with the fistulas were incredible. Just unbelievable. She is, apparently, cured of the fistulas. They did a check up angiogram a year later and pronounced that she won’t need anymore.
She did spend a night in the ICU after the procedure. Recovery was the same as for the angiogram, with caution about bleeding from the place in the groin where they went into the vein.
I was dealing with cancer at the same time as these procedures and MGH was amazingly considerate in scheduling her, then me, then her, then me, so that I could be with her.
@ChuckleDoodle
The original MRI was done to rule out MS as I was having some numbness. (No MS) Finding the aneurysm was incidental and have not had any symptoms. I keep hoping the darn thing will just disappear. Grrrrrr!
@compmom I am so glad to hear of your daughters successful outcome and i hope you are doing well.
Kajon I was thinking my daughter;s procedure was similar to what you will have,even though the effect in the brain affected you visually and for her it was aurally.
I don’t have personal experience, but have done medical research on the subject for decades.
Of all cerebrovascular diseases, treatment for CCF has very low risk and high success rate (including the aneurysm at your carotid). My advice is to find a reputable and experienced neurosurgery or interventional neuroradiologist for your treatment.
ChuckleDoodle, you have been through so much, with your husband’s health issues in particular. When I first started reading your post, I thought maybe it was stress related. I hope you can use this leave of absence to focus on yourself, not work or school or spouse (though I know that’s impossible). It just seems ridiculously unfair that one person has to deal with so much.
Thanks everyone. Luckily, I’m retired military and all the doctors and tests were moved up so i could get seen as soon as possible. (The first 3 ophthalmologists had me come in at 4`30 pm for a 2 hour exam). The neursurgeon squeezed me in yesterday at walter reed. I dont have the typical symptons of ccf but he thinks something is wrong. I have an appt with him on oct 2 for an angiogram so they can get a better idea of how to treat me.
@busdriver11 I was thinking it might be stress related too but normally when I get stressed, I get cold sores on my lips. So far no cold sores. I had the angiogram last week and before he started the procedure, the neurosurgeon said he doubted I had CCF because my eye was not bulging out. After the procedure, he tells me that I do have a type B indirect CCF. Here’s a link showing the CCF. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199976/#!po=25.0000 Be forewarned there is a gross color picture showing a ‘needle’ placed around the eyebrow, inserted behind the eye.
I am scheduled for surgery on 6 November when the neurosurgeon will place multiple platinum coils in the cavernous area. The coils will hopefully allow the vein to clot which should stop the blurry and double vision. I told him if he happened to get a cancellation and can fit me in, I would be happy to make this happen sooner. Closing one eye to read a book or my tablet is driving me nuts.
This has forced me to take a leave of absence from school as well as it has been hard to write anything on my dissertation when I’m having visual difficulty. argh.