Cerebral amyloid angiopathy

that was very insightful hope i have the amount of courage as you. thanks and god bless

Anyone else diagnosed with this?

Hi Shedwina, and welcome to Connect. I moved your message to this discussion about Cerebral Amyloid Angiopathy in the Stroke & Cerebrovascular group so that you can meet others living with CAA. To see the entire discussion and meet members, click VIEW & REPLY in the email notification.

In this discussion, you'll meet members like @gbiffart @sistertwo and @prochef1967

Shedwina, have you been diagnosed with CAA or are you caring for someone who has?

I just joined this site. My husband ( a very fit, active age 68) had a very large ICH in his right occipital lobe, also bleeding into his temporal & parietal lobes on 01/27/18. Was sitting at his computer & vision just went completely blurry; had been having headaches for about a week. He had been having cognitive/memory issues for the past 2 years. Took him to ER thinking detached retina, because no typical signs of stroke. He was in ICU 5 days, neuro step down 6 days & then at a rehab hospital for 2 weeks. He came very close to death in ICU (unresponsive for 36 hours, very labored breathing, eyes fixed when a light was shown in his eyes), total left side neglect by day 3, has lost the left side of his vision in both eyes & has significant memory & cognitive processing issues. Physically, he has come back almost completely...was riding a horse last weekend! He still has significant memory, vision & mental processing problems & is in outpatient rehab. Can't drive & doubt that he ever will again. He had a post release MRI with & w/o contrast, with multiplanar, multisequence imaging. It showed that he still had some residual blood in the occipital lobe, swelling had gone down, some other things that were over my head in my understanding & it did show about 5 spots of prior microbleeds. From all this, the neurology nurse practitioner we saw deduced (perhaps with the help of her supervising neurologist?? I don't know) came up with a "85-90% sure" diagnosis of CAA. I have tried to get a 2nd opinion from Dr. Steven Greenberg, who runs a research lab on CAA in Boston, by having him just review husband's scans & records, but was told he doesn't do that unless he sees the patient in person. Makes no sense to me since the only way to diagnose is to look at scans, records & history. I am trying to find someone who will give me a second opinion & if at all possible, tell me more about what to expect in terms of future bleeds, longevity, the stage he is in this process (ie, does he have a mild, moderate, or severe case of CAA??), did the locals give him the right kind of MRI to see all microbleeds or does he need a PET scan or something else, and anything else that would be helpful. I was hoping someone here could let me know if they have found anyone who will/can do this, without seeing him & just doing a review of his records & scans. Any assistance anyone (members, moderators or doctors) can offer would be greatly appreciated. Thanks

Hello @nonipoppy

I can certainly understand your needing to see a good specialist. It sounds as if you and your husband have been through some very difficult times. Do you live near a Mayo facility? There are three, Minnesota, Florida and Arizona. You might try calling the nearest Mayo facility and see if they are willing to review his records without seeing him personally. Here is a link with some more information about getting in touch with Mayo, https://www.mayoclinic.org/patient-visitor-guide/minnesota/appointments/faq

I wish you and your husband well as you seek out the best treatment for him.

Will you keep in touch? I look forward to hearing from you.

Teresa

I am not sure you replied to the right person. I was chatting with Jennifer and she sent some info which was lost when the chat shut down, in mid conversation. I am doing very well but want info related to fitness weight training and have cardio info but not strength into.

THX

@hopeful33250 Thank you Teresa; I was going to call the Minn. clinic (that's the main one, correct?) Monday and see what they advised us to do. We live in western NC, so not really near any of them. I'm hoping that someone will be willing to look at all his records & scans & tell us something from that. I really don't see the need to consult in person, as the diagnosis is all based on what the scans tell them anyway...unless I am incorrect in thinking that? Anyway, thank you for the response & I will post again when I know anything new. Noni

@nonipoppy Hi Noni:

I hope that your contact with Mayo works out well for you. I look forward to hearing from you again.

Teresa

My mother saw Alejandro A. Rabinstein, M.D. at Mayo in Minnesota. We were very pleased with his vast knowledge and professionalism.

I am sorry to hear what you've been going through. And, grateful he has been able to resume to some of his activities. Although my mother didn't go through the extreme effects that your husband did, a lot of what you wrote about brings back memories of many of the same things they both experienced. If you click on my name, some of what we experienced have been written about in a few posts that I made.
Many prayers and positive thoughts for him and you.