Confusion about my brain bleed from doctors!

General
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Hi Everyone,

I haven’t written since November. I’ve been on a rollercoaster ride with my doctors from Mayo here in Arizona. I’ve been having eye issues since my non-aneurysmal SAH (NASAH) last April. Now I know what to call it. I visited with my new Mayo neurologist talking about the pressure behind my eyes and the random flashes of light in my right eye and random images of ceiling fan spinning in dark rooms in both my eyes but mostly now right eye. I had a vitrectomy and cataract surgery in my right eye about a year before my stroke. So there’s that complication. I had what’s called asteroid hyalosis in my right eye that developed after lasix surgery in my 30’s (I’m 63 now). Anyhow, my neurologist wanted a spinal tap to check and see if I had intracranial hypertension…And thus we went down the rabbit hole…

At the time I weighed about 215lbs. My spinal tap pressure came back at borderline high so my neurologist put me on acetazolamide and labled me with having idiopathic intracranial hypertension (IIH). Now, I said “But doc, I had a stroke, so it’s not idiopathic”. That went on deaf ears and he told me to lose weight and take the medication. I don’t know if anyone out there has taken acetazolamide but within a few days it made my tongue, esophagus, and stomach burn. It gave me neuropathy in both my feet. I was not tolerating the medication and these side effects were worse than what it was supposed to treat so I had to stop taking it. I felt like I was reacting to it because I am allergic to sulpha drugs and acetazolamide is a sulphamide drug. He then put me on topiramate. I got the same side effects. So I get this email from him saying he wants to test me to see if I am actually allergic to acetazolamide! I found this so offensive because regardless if my reactions were from an allergy I wasn’t going to take it, period! I didn’t feel listened to so I went to the patient advocate to complain…

Well, I received a letter from her that said she had reviewed with the “team” about me and then said I should go through with the allergy testing for the medication! Talk about not being heard.

So then I see this expert neuro opthamologist at Mayo and she seemed surprised that I was calling my brain bleed a “stroke” seeing that there was no cause for my bleed. Talk about ignorant! I said, uh, yest, I was in intensive care for 9 days, didn’t remember two months after that and had right side weakness and went to PT and OT for several months…My inside conversation was saying, “I can’t believe I am on the defensive about my stroke/brain bleed”. Then she sees my spinal tap results and stated that the number wasn’t high at all and she immediately said I didn’t have IIH…She did a bunch of tests of my vision and looked at my retinas for tears and such and said everything looked fine. She said I may have "Optic nerve drusen (also called optic disc drusen) are benign, calcified protein deposits that build up inside the optic nerve at the back of the eye. This makes sense because I had asteroid hyalosis which is calcium deposits from the vitreous membrane damage. And it can cause vision flickering. So I have an appointment with my retina doctor to get that checked. She couldn’t do it.

So, I have found a new neurologist and he’s really great. He said the IIH meds are terrible. He also said he didn’t think I had IIH. He basically said that with the amount of blood I had that spread from the SAH space to intracerebral areas, my symptoms are from the damage. Brain damage. Scarring. I have siderosis on my latest MRI. “This is a rare, progressive neurodegenerative condition caused by chronic, low-grade bleeding into the subarachnoid space (where cerebrospinal fluid surrounds the brain and spine) This causes iron (hemosiderin) to deposit on the surface of the central nervous system, causing toxic damage.”

Fun times.

Anyway, I really like my Mayo neurosurgeon. I had a nice follow-up with him after my MRI. He has ordered a CTA and another angiogram in June or July. It bugs him (and me) that I had this sudden bleed and Banner couldn’t find the cause.

Other news, I had a total knee replacement on my left knee. I was getting back to tennis and cracked my meniscus in half and had grade four missing cartilage. My left side is hyper sensitive while my right side is sluggish. So, the pain has been annoying. It’s been nagging especially at bedtime, which is common anyhow. My sleep is crap anyway so this has been a challenge to say the least. But, I am six weeks out and I am making great progress. I hope to be back playing tennis by the fall.

I hope someone out there can share their experiences with me about vision issues, doctors not listening, and these IIH medications. My new neurologist did say he was amazed that the damage wasn’t worse from my SAH and that I am truly lucky (blessed) to be alive.

Laura

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Wow, you’ve been through a lot! I tried to find a good article on NASAH but kept getting this Non-aneurysmal subarachnoid haemorrhage (NASAH) | CUH which doesn’t mention treatment. Went on the hunt and best I could figure out is the NASAH group is in the 10-15% of the SAH umbrella. I didn’t know there were so many different types of SAHs! I had to stop myself going down that rabbit hole today. :joy: I would think every doctor should know a SAH is a stroke, doesn’t matter what type it is, right?

Yes I’ve had doctors not listen, it’s called medical scapegoating one of my treatment providers shared. Mostly male providers to female patients but I’m not sure if there’s any real statistics compiled. But it can happen with any gender on either. To not be heard as a patient is degrading, I often wonder how providers feel when they’re not heard. Perhaps they feel they’re wasting their time when we don’t follow their advice. I’ll ask the next one I see if I can remember. I know my PCP gets frustrated with me as does my wonderful neurosurgeon. They give me too many rules to follow :joy:

I had a lot of weird vision issues after I ruptured for several years. Oddly I missed the beautiful filigree iris lace lights when they stopped. I asked my ophthalmologist to send a referral to a neurologist ophthalmologist so it could get fixed or discover the why’s of them and was told that’s not what they do. Eventually everything has corrected itself for the most part.

My first neurologist put me on a lot of different epilepsy drugs for a tremor. Topamax was one of them aka topiramate. He finally agreed to quite trying since it didn’t really affect my quality of life. We ended up firing each other when he and his partners sold out to a big corporation. He wasn’t getting my messages for things he asked me to call in on. His new office manager refused to follow his rules about getting me into a quite dark room before we saw each other. Something I needed to be able to communicate with him due to speech issues. PCP sent a referral to someone a doctor friend spoke highly of. That neurologist put me on something very addictive for the tremor. I stopped taking it after 2-3 days. I didn’t like the way it made me feel, PCP was happy with my choice. He was replaced with another wonderful one who wasn’t into drugs as a first course of action and gave me some suggestions I could try with behavioral changes I was working on. He relocated and I got my wonderful NP. We met on a good day, I tried to get an appointment after a slew of bad days through the portal finally just called in and got in that day. He apologized several times afterwards and gave his word he’d not do it again. He gave me a prn for the bad days and usually beats my neurosurgeon to order imaging. He won’t get to this year, she’s already ordered it :joy:

I’m glad you’ve got some providers you’re comfortable working with, you definitely stuck to your guns!