1. < Stroke & Cerebrovascular Diseases

Mysterious Stroke Diagnosis and assessment of approach

Posted by Carer1 @carer, Aug 26, 2016

My husband is 44years old and we have two beautiful children. On August 12 he started getting severe headaches for which several medications Panadol, Mortrin, Biprofenid, Baralgin, and Tramadol were all unable to stop his pain.

He has never had issues with high blood pressure nor is it present in his family history and over the years has only had a couple of borderline high cholesterol readings. In his family history there are sinus issues but he has never experienced this. He was in relatively good physical condition as his diet has been reasonably healthy and he exercises regularly.

At different times since August 12 he started feeling nausea, lack of appetite and a clogged ear sensation. Then most recently he experienced the image of what he saw last spinning in his mind and making him dizzy and also described seeing two images side by side confusing what he was viewing.
We visited three hospitals and had many tests several blood tests, a CT Scan and others which were normal. Until finally an MRI showed 1cm x 1cm abnormality which doctors believe to be a stroke. This is confusing to us as he had no high blood pressure nor high cholesterol neither did he experience traditional stroke symptoms.

He was then put on Plavix and Crestor and sent home while we await further results in the hope to find the reason for the event. We have a follow up visit on Monday for further results and were told to use Panadol. Now the Panadol is controlling the pain but is still there. We were told that in the event of worsening condition – stroke symptoms, listlessness or severe headaches to return to the hospital at which point a Lumbar Puncture will be administered.
I need to know if there is more that we could be doing as I am concerned that he may be on the verge of a major event that could be prevented. I also want to know about the certainty of the stroke diagnosis and how effective the approach I have described seems.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Martin Jensen, Volunteer Mentor | @predictable | Aug 27, 2016

@carer, welcome to Mayo Connect and our many members with medical experiences to share with people who face new health challenges. Your husband's experience as you describe it seems to be relatively rare, and if so, it may take a while for a few of our members with similar experiences to discover your case and comment on it. Meantime, some articles on the Mayo Clinic web site might be helpful to you.

One good article that focuses on headaches is at http://www.mayoclinic.org/symptoms/headache/basics/causes/sym-20050800. Fairly high in the article is a list of many causes of headaches with links to more information. One of the links is to an article on strokes: http://www.mayoclinic.org/diseases-conditions/stroke/symptoms-causes/dxc-20117265. The level of information in this latter article is somewhat elementary given your obvious familiarity with medical issues, but I found it helpful as a framework for thinking about strokes and the threats they present.

After the MRI, your husband's doctors prescribed Plavix, a common anticoagulant for help in preventing (or dissolving) blood clots. The Crestor is a statin used to treat or prevent cholesterolemia. These seem to reveal the doctor's view pretty concretely. Would you like to have a second opinion from another physician to help you develop more confidence in what's ahead? I hope you can get that kind of confidence. I suspect that will depend in part on how well his current doctor focuses on his symptoms and closely tracks his recovery. That kind of care undoubtedly will alleviate your concerns about a possible major event in the offing.

I will say that your husband got an early warning just two weeks ago, and he has come a long way -- with you at his side -- since then. The combination of those factors suggests that the crisis is past and recovery is the main path ahead.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 27, 2016

Hi @carer, I add my welcome to @predictable's. I'd like to bring fellow members @cynaburst @soitis4590 @jackj @martishka @bsox1901 into this conversation about stroke. They have all had experience as a patient or caregiver with stroke. You may also wish to watch this video with Thomas G. Brott, M.D. a neurologist and clinical researcher at Mayo Clinic in Florida called "Let’s talk stroke prevention" https://connect.mayoclinic.org/discussion/on-facebook-live-lets-talk-stroke-prevention-with-thomas-brott-md/

Monday must seem like a long way away. Please know that you have the Connect community with you. Let's help you discover what questions to ask, and to help you prepare for the follow-up appointment on Monday.
What questions are you considering to ask the care team?

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soitis4590 | @soitis4590 | Aug 28, 2016

Good morning @carer, I had symptoms for about 2 weeks previous to the stroke.. Nausea, nearly fainted once or twice, dizzy and headache. Unfortunately, I was in a psychiatric hospital at the time. My symptoms were ignored or brushed off as (ironically) "in my head"- even when the stroke in earnest started. I too had good (low) blood pressure, low cholesterol, and was in good physical health. I was 40 at the time of the stroke. No family history. In my recovery, the doctors could not figure out why I had had such an event. As it turned out, it was an autoimmune disorder called antiphospholipid antibody syndrome- most likely from Lyme disease. I was at first put on Plavix then eventually on Coumadin. 81mg of aspirin was added somewhere along the way. I have learned since then and through many medical situations that a second opinion is indicated, especially when one doctor is deciding that something "major" is afoot. I was diagnosed with Lupus 2 years ago. The second doc said no Lupus giving me a more thorough work up a different, better blood test. I have also gotten second opinions outside of the small circle of docs in my community. The "fresh" eyes and no ties to the first doc is sometimes beneficial. The only other thing I might suggest to do is get paper copies of medical notes and test results. As the medical journey may end up being a long one- stay organized with them! I have not and I swim in documents. I didn't learn the value of paper copies until just a few years ago. I was surprised to find how much info about me was incorrect in my medical records ( somewhere along the line I was diagnosed with Alzheimer's. It has trailed me from doctor to doctor.) My doctors were basing some of what they do on this wrong info about me. Too, when I have to go to a new doc, especially one outside of my community- I have my records to bring. I am glad you have joined this community. Both my husband and I, at the time of my stroke, were blindsided. We had no idea what questions to ask. We did not have a support. I have here, only recounted my experiences, though I hope they are helpful in some way to you.

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1 reply
Carer1 | @carer | Aug 28, 2016

Thank you for your warm welcome and for your comments. We are charting new frightening medical territory here and so it is a real comfort to have access to a community of people with some experience with what we are going through. We live on a relatively small island so our pool of doctors and facilities although apparently competent are small. So you are right @predictable we are basically trying to build more confidence for what's ahead. Through family contacts yesterday we got an independent review of the MRI images by a radiologist in New Jersey who confirms that the infraction in the right occipital lobe is in fact a small stroke and noted that his the left nasal area is inflamed. We would like to get a second opinion from another physician but plan to wait until our appointment on Monday (Yes soooo far away @colleenyoung). On Monday we are planning to ask about the new results we should receive then, the conditions they have tested for so far and if still unresolved what they intend to test for next - basically about their exploration and treatment plan. Thank you @soitis4590 for sharing your experience. I have been keeping all reports we were given in a folder but have also digitized them to facilitate sending. We would like a second opinion but want to get a BETTER second opinion so as not to court a misdiagnosis. So we are trying to assess the standard of his current care team and their plan to be able to rate what more can be done by whom. This task is a little daunting as neither of us have any medical experience.

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2 replies
Carer1 | @carer | Aug 28, 2016
In reply to @carer "Thank you for your warm welcome and for your comments. We are charting new frightening medical..." + (show)
@carer

Thank you for your warm welcome and for your comments. We are charting new frightening medical territory here and so it is a real comfort to have access to a community of people with some experience with what we are going through. We live on a relatively small island so our pool of doctors and facilities although apparently competent are small. So you are right @predictable we are basically trying to build more confidence for what's ahead. Through family contacts yesterday we got an independent review of the MRI images by a radiologist in New Jersey who confirms that the infraction in the right occipital lobe is in fact a small stroke and noted that his the left nasal area is inflamed. We would like to get a second opinion from another physician but plan to wait until our appointment on Monday (Yes soooo far away @colleenyoung). On Monday we are planning to ask about the new results we should receive then, the conditions they have tested for so far and if still unresolved what they intend to test for next - basically about their exploration and treatment plan. Thank you @soitis4590 for sharing your experience. I have been keeping all reports we were given in a folder but have also digitized them to facilitate sending. We would like a second opinion but want to get a BETTER second opinion so as not to court a misdiagnosis. So we are trying to assess the standard of his current care team and their plan to be able to rate what more can be done by whom. This task is a little daunting as neither of us have any medical experience.

Jump to this post

@predictable @colleenyoung Forgot to mention that he also had an Echocardiogram done that indicated normal cardiac structure and function.

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Aug 28, 2016
In reply to @carer "Thank you for your warm welcome and for your comments. We are charting new frightening medical..." + (show)
@carer

Thank you for your warm welcome and for your comments. We are charting new frightening medical territory here and so it is a real comfort to have access to a community of people with some experience with what we are going through. We live on a relatively small island so our pool of doctors and facilities although apparently competent are small. So you are right @predictable we are basically trying to build more confidence for what's ahead. Through family contacts yesterday we got an independent review of the MRI images by a radiologist in New Jersey who confirms that the infraction in the right occipital lobe is in fact a small stroke and noted that his the left nasal area is inflamed. We would like to get a second opinion from another physician but plan to wait until our appointment on Monday (Yes soooo far away @colleenyoung). On Monday we are planning to ask about the new results we should receive then, the conditions they have tested for so far and if still unresolved what they intend to test for next - basically about their exploration and treatment plan. Thank you @soitis4590 for sharing your experience. I have been keeping all reports we were given in a folder but have also digitized them to facilitate sending. We would like a second opinion but want to get a BETTER second opinion so as not to court a misdiagnosis. So we are trying to assess the standard of his current care team and their plan to be able to rate what more can be done by whom. This task is a little daunting as neither of us have any medical experience.

Jump to this post

Another reason contributing to growing confidence that the crisis is past, @carer. I earnestly hope that these positive signs prove that the path ahead is one of recovery!

REPLY
Cynaburst, Alumna Mentor | @cynaburst | Sep 1, 2016

I agree that it would be a great idea to get to a large research hospital to be evaluated. If your options are limited where you live, perhaps you can travel to a larger place close by?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 2, 2016
In reply to @soitis4590 "Good morning @carer, I had symptoms for about 2 weeks previous to the stroke.. Nausea, nearly..." + (show)
@soitis4590

Good morning @carer, I had symptoms for about 2 weeks previous to the stroke.. Nausea, nearly fainted once or twice, dizzy and headache. Unfortunately, I was in a psychiatric hospital at the time. My symptoms were ignored or brushed off as (ironically) "in my head"- even when the stroke in earnest started. I too had good (low) blood pressure, low cholesterol, and was in good physical health. I was 40 at the time of the stroke. No family history. In my recovery, the doctors could not figure out why I had had such an event. As it turned out, it was an autoimmune disorder called antiphospholipid antibody syndrome- most likely from Lyme disease. I was at first put on Plavix then eventually on Coumadin. 81mg of aspirin was added somewhere along the way. I have learned since then and through many medical situations that a second opinion is indicated, especially when one doctor is deciding that something "major" is afoot. I was diagnosed with Lupus 2 years ago. The second doc said no Lupus giving me a more thorough work up a different, better blood test. I have also gotten second opinions outside of the small circle of docs in my community. The "fresh" eyes and no ties to the first doc is sometimes beneficial. The only other thing I might suggest to do is get paper copies of medical notes and test results. As the medical journey may end up being a long one- stay organized with them! I have not and I swim in documents. I didn't learn the value of paper copies until just a few years ago. I was surprised to find how much info about me was incorrect in my medical records ( somewhere along the line I was diagnosed with Alzheimer's. It has trailed me from doctor to doctor.) My doctors were basing some of what they do on this wrong info about me. Too, when I have to go to a new doc, especially one outside of my community- I have my records to bring. I am glad you have joined this community. Both my husband and I, at the time of my stroke, were blindsided. We had no idea what questions to ask. We did not have a support. I have here, only recounted my experiences, though I hope they are helpful in some way to you.

Jump to this post

@soitis4590 Such good suggestions. Having paper copies is a great idea. Sometimes as I look at my paper copies questions come to me that I address with my health care provider.

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