I had a ruptured and SAH stroke in 2019. My surgeon released me to maintenance “as needed” care. His personal assistant was my neurologist. She took another position and he never replaced her. Since I had been released from care I didn’t see any reason to find another neurologist and then… I had cataract surgery and my vision got worse. My opthalmologist and my retina specialist said I was fine but not being able to see and my eyes hurting just didn’t seem fine to me.
I let it go for a year and talked to my primary care physician. He ordered a MRI, called and said I need to see my neurologist. I called and explained I don’t think I need to see my surgeon but I need somebody to explain my MRI to me. I am still in some kind of hold pattern. Seems simple enough to talk to a local neurologist, we don’t have any. The sentence that is bothering me is "areas of chronic hemosiderin deposition.
My question is this staining from the SAH I had in 2019 or is this new or recurring bleeding?
Good Morning Mary! I’ve moved your topic to be under the General tab. I believe the reason your PCP is telling you to see your Neurosurgeon is so the Neurosurgeon can compare what they already know and images on your file with your latest imaging. In my experience, if the radiologist who read your most recent MRA didn’t have access to the past ones, it can be a bit of a toss up. Please reach out to your Neurosurgeon and let us know what you’re told. I have a good bit of staining from my rupture, I’ll have to ask mine next time I see her if it ever goes away. But I won’t see her for a couple of years.
Hey Mary,
Now, before I start, I need to say " I am NOT a dr " just a neuro patient. I am not giving you a diagnosis but I will try to explain some of their terminology, which is often very confusing.
In, again, VERY basic terms, they can see blood in the subarachnoid space on the scans, but after having a SAH this is not an uncommon finding. It’s my understanding that it’s the iron in our blood which can have an effect on the surface of the brain (They don’t like each other). I had blood in my CSF post surgery, but the surgery itself (craniotomy) sent my whole system for a spin, so I have no idea of the individual affect of the blood alone.
I’m sorry to say but I think you will need to find a neurologist in regard to having this more fully explained. I know some big medical clinics will read your images and provide an online consult for a fee. During Covid I know Mayo had some such online services, but I’m unsure if these continued after the pandemic, nor whether neuro was part of the telehealth service offered. It may be worth some investigation and asking some questions.
Hi Mary,
When I read your story, I thought I was reading about me! In 2019 I had a 13 mm brain rupture and 3 strokes. After a bit of healing, I had cataract surgery. The past couple of months I have had double vision and some fogginess in my left eye. Ophthalmologist says everything is fine. I’m seeing my primary care doctor in a couple of days. I’ll see if she orders an MRI.
Please let me know your outcome.
Arlene
Hi Arlene… Welcome to the group. There’s a lot of helpful information out here and a great bunch of people who will share a lot of helpful information. I contacted my surgeon, he got the MRI and looked it over. Unfortunately all he has said is he is going to refer me to a neurologist for further evaluation. Doctors don’t speak plain English, surgeons are worse. I seriously only want the neurologist to explain the MRI to me in English that even I can understand.
I hope you get an answer about your eyes. It’s so irritating. I just don’t believe in coincidence. There has to be a connection somehow.
The local hospital had an old MRI that wasn’t put on my patient portal but it was from June of 2019 when I decided to do acrobats off my back porch. The surgeon is referring me to a neurologist for further evaluation. So I am back where I started.
Frustrating isn’t it? I tell my doctors to dumb it down. I was fortunate to study the brain in college, BH is in sales. We’d go see the Neurosurgeon, BH would nod and I’d say did you really understand that or did it sound Greek to you. Dr. Q-W would laugh and use simple language. I’ve always thought they needed a brain model that can open up and show all our cerebral arteries, etc. Whatever you do, don’t nod your head in agreement if you don’t understand. Seems we do that on a regular basis. Never, ever be afraid of asking for clarification. I asked one specialist whom I did not understand who was paying the bill to see him as I was a bit perturbed. He didn’t understand what I was asking. So when he asked what did I mean, I said I’m paying the bill so please use words I understand as my major wasn’t what his was. It embarrassed him but he did dumb it down for me,