I'm a 31 yr old female that had an episode of aura migraine in 2008 - I had the aura with flashing lights in my right eye (first time I've ever had that) and the entire right side of my body went numb. The numbness went off after about 20 minutes. Everyone figured I was having a migraine due to meds I was taking (which have since been stopped).
Since then the numbness came back back little by little and is now currently with me all the time - the intensity varies but it's always there. Some days it's mildly irritating and other days it is deepy painful and leaves me bed-bound. I also experience blurred vision in my right eye a few times during the day. Occasionally the numbness will 'spread' over to my left side but it's not the same as on the right, it's a much lighter numbness.
On my right side I have altered sensations, and it is usually colder than my left side. I suffer terrible migraines with the pain centering around the right temple.
I am seeing a neurologist for the 3rd time in a couple of weeks - I've had two MRIs scans and one CT scan, all completely clear with no leisons or anything abnormal. So I'm at a loss as to what is causing this problem.
Recently I have been reading about PFO (patent foramen ovale) and wondering it that could be the cause of this problem because there doesn't seem to be any answers from looking at my brain.
Well, it's not much, but it's a start. Actually, I want to thank you, too. Your post made me look into something that might eventually help me.
I have a an artificial aortic valve because of bicuspid disease. I also have a lifelong history of headaches. My headaches do not always fit the presentation of classic migraines, but I was in fact diagnosed with migraines as an adolescent, and chronic headaches have been a lifelong issue. Nowadays I usually have headaches without aura, occasionally I have an aura without the headache, and on rare occasions I have the classic aura followed by a headache.
I have known for while that bicuspid aortic valve patients sometimes have PFO also, and vice versa. I never thought that I had PFO myself, because I have had many transthoracic echoes, one transesophegeal echo, two CT scans of the chest, and two open heart surgeries, and no one has ever mentioned to me anything about PFO.
But now I see from the link that I found for you that PFO has to be specifically looked for. I doubt that the cardiologist who did my TEE had me do the breathing technique to open up a potential PFO, and I know that I have never had a transcranial doppler test. I think that with my history of both bicuspid valve and migraines, there is a good chance that I have PFO, too.
So again, good luck to you. If you find out anything more, do post back and let us know.
Well I do hope it's helped you! Yeah from what I read a PFO needs a specific test otherwise it's missed off.
Sounds like you've really been through the mill with it all already.
If you have it do you think you'd opt to close it?
There's lots of talk either way but I think the risk of stroke is higer if it's left open so (to me anyway) that would be reason enough to close it.
I will be asking my neuro about it all in a couple of weeks but I am not sure if PFO could be causing my symptoms - I have thyroid disease too, part of me wonders if it's that causing it but until I reach optimal medication on that (I'm struggling with synthetic meds) I won't know and would hate to be missing something in the mean time.
The episode that started this numbness/pain for me looked very much like a stroke - we called an ambulance but it was deemed a migraine only... makes me wonder if there's a connection?
If I have it, would I opt to close it? Well, I don't think that would even be an option that would be offered to me, at this point. From what I have read, the cath-delivered PFO closure devices are still investigational, so right now if you need to have a PFO closed, you are talking about open-heart surgery. I don't think any cardiothoracic surgeon will be willing to do an OHS on me at risk of death, to get rid of headaches that I have had all my life. I wouldn't ask them to. I've had two OHS and nearly died in the second one, and I don't want another one if I can help it.
If the cath-delivered devices get to be standard of care, I would consider getting a PFO closed with one of them, IF I could get in with a good interventional cardiologist that had done a lot of them and was really skilled at it. I wouldn't want to be part of somebody's learning curve. There still is some risk of disaster, even with the cath-delivered closure devices. If they let that thing go at the wrong split-second, you have a horrible problem. Even if they deliver it correctly, you still can't be 100% sure that the site is going to heal just like you want it to. It's not out of the question that you could create a new problem with your heart. You will be taking a risk, regardless.
With your type of symptoms, I understand being willing to accept more risk, in order to get help. But even for you, if you do turn out to have PFO, I think they will try to manage you on coumadin or other meds. I predict the docs will be reluctant to do anything as drastic as OHS, even for you. They might do it eventually, but it won't be like they will do a test for PFO and then if it's positive, they will smack their heads and schedule you for closure. Maybe if you went to that doctor that has the pfodoctor site, he might. But otherwise, the system usually doesn't work that way. It tends to take longer than that for risky solutions to be offered.
One of the things that the doctor on the pfodoctor site said is that just knowing you have PFO can lead to more effective headache treatment, even if you don't have the PFO closed up. Cindy, if you find out anything about particular medications for PFO headaches, I would surely like to know. I am already on coumadin to prevent stroke, and that does not do a thing for my headaches. If there is some type of prophylactic medication that works particularly well to prevent PFO-related headaches, I would try it, even without having been diagnosed with PFO. Any type of standard headache prophylaxis, I think I can get someone to prescribe for me.
I just now discovered this post. If you are still reading this, I urge you to investigate the PFO thing if you haven't already. I am now 61 and had a large PFO found when I was 57. And I had it closed with a heart cath procedure. They will close it if it meets criteria. From what you've just said, if you had PFO, you would meet criteria. Criteria is basically that you are having stroke like symptoms or had or having a stoke. It does have to meet FDA criteria but my TIAs were not as bad as you are describing and they met. The procedure was really no big deal and I have complete closure and it has dramatically improved my quality of life. BUT, if you were to have it, be sure to find an interventional cardiologist who is concentrating on this area and who has done a lot of closures--that is very, very important. Also for the person who has bi-cuspid valve--so do I and I also have aortic root dilation and dilation of my aorta up to top of arch--all thought to be congenital. I just posted a very long post on complicated migraines group (forum on Medhelp) under name of MiMIFlo. I would encourage you to look it up and read it. Gives much more detailed and extensive information.
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