If you’d like to share your stroke,PFO or migraine story and help me grow this blog for the benefit of others, please use this link to go to the posts others have already shared then consider adding your own.
If you’d like to speak to me personally, you can contact me at the above link as well or call my office 401-632-0868
Amy Gezon 7:29 pm on March 1, 2009 Permalink |
I am 41 years old and last Thanksgiving I woke to find my left arm completely numb and unable to move, my first thought was, I have had a stroke. My husband was at work and my kids were asleep and I found myself strangely calm but unable to call for help. Slowly over 15 minutes or so I gradually regained feeling and seemed to return back to normal and dismissed it as my arm fell asleep. Since that time I have felt very dizzy, increased headaches, pins and needles on my left side, arms and legs, intermittent heaviness and numbness on my left side of my face as well as episodes of amnesia. I also developed galactorrhea (and I’m not pregnant or nursing). So my primary care doctor ordered an MRI to rule out a pituitary tumor, which showed numerous scattered hyperintensities and referred me to a neurologist. Prior to seeing a neurologist, I woke up at 4 am with crushing chest pain followed by intermittent fluttering in my chest, which my husband heard, (he is an ER doc) so he got me in with a cardiologist ASAP. They performed a stress ECHO which revealed a significant PFO. The cardiologist explained that Trans Global Amnesia is a very common symptom in people with PFO. I felt relieved that there seemed to be an answer….then,
I followed up with a neurologist, who went off on me saying that she didn’t get paid much for talking to me and that the cardiologist only spends 5 minutes with me, inserts a device and makes thousands, that 25% of the population have PFO’s and that chronic migraines can cause amnesia, numbness and auras. To me I don’t care if my symptoms were TIA or migraine related, it seems there is substantial evidence that both TIA and migraine can be attributed to PFO. Splitting hairs over what it was seems pointless.
I also mentioned to her that I felt better when the barometric pressure was high or when I traveled to sea level, I live at approximately 4800 ft above sea level. She asked in a skeptical voice “so you feel better when its sunny?” When I tried to describe feeling like I was going to lose consciousness as “somewhat out-of-body feeling”, she asked me if I had seen a psychiatrist for that.
Can anyone relate to my symptoms or experience? I am also a runner with a resting pulse 55-65 bpm, low blood pressure 100/70, 90/60.
The PFO relation seems logical to me so despite the grumpy neurologists opinion I am going to close it May 4th.
Thanks-Amy
SLC, UT
David 7:42 pm on March 2, 2009 Permalink |
Hi Amy;
Thank you for sharing your story. It is unfortunate that you have experienced the delays with your care you cited so well in your note. I hope you continue to “go with your heart” in making your decision to close your PFO. So many others have been faced with the same situation, basically the neurologists and cardiologists can’t agree on a plan of care. This is virtually the same problem as others report in their stories as well as what I personally experienced in making my decision to close my PFO. I can only tell you that it was the best decision I made, over 2 years post closure and still not a single migraine and I have my body and life back. Keep us all posted on your progress please.
Best Regards,
David Dansereau
If you missed my stroke story here it is:
http://knowstroke.wordpress.com/2006/11/16/david-dansereau-my-stroke-story/
Lisa DiMichele 7:59 pm on March 21, 2009 Permalink |
It still seems surreal to me….after so many er visits, neurologists, endocrinologists, rheumatologists finally an answer and validation.
After 20 years of suffering migraines with aura, two years ago I really became extremely sick. My friend and I were rearranging furniture in my house, bringing big stuff up and down the stairs; I really overdid it. I started feeling unusually exhausted from that day on and a week later suffered an acute sense of dizziness and numbness through my left side; I now am quite positive that was the first of a series of TIAs. Cat scan showed zip, however. The next week I was conversing with friends when suddenly my vocabulary disappeared, again numbness and tingling surged through my left side.
Within days,I became extremely weak and breathless, had tremors, and brain fog. I was bedridden for 3 months. I had blinding headaches. My husband had to carry me into my doctor visits. I really thought I was dying. During this time I had 2 lumbar punctures, MRIs, Spect scans, a Pet Scan, and numerous blood tests. Still, no answers. During one of my hospital stays, they discovered I had postural orthostatic hypotension with tachycardia, meaning that with posture changes my blood pressure would drop and my heart would race struggling to pump blood to the rest of my body. I also was always cold and developed Raynaud’s.
Last month after going to the er because I had fainted, the doctor decided to admit me to run some tests. A bubble echo was done and ASA with a PFO were found. To think that the problem was stemming from a heart problem and the doctors looked everywhere but there is, to me, mind-boggling. Shouldn’t they have known about the relation of migraines TIAs and PFOs? Needless to say I want to have the closure for myself and my family. I am 46 years old with a wonderful husband and 3 beautiful boys.
So far I have met with a thoracic surgeon who does the closure via open heart surgery; he definitely recommends that it be closed. He says he would either use my tissue or bovine tissue for the repair. He says to do nothing that requires exertion as that will force blood more rapidly through the shunt and increase my risk of tia or stroke. (Here I can correlate my exertion 2 years ago moving furniture with my downfall) I will also meet with another doctor that performs the percutaneous method. I want to know if with the percutaneous method they can be sure to cover the hole completely where the shunt is and that the device will not dislodge. It seems that with open heart surgery, because they doctor will come “face to face” with the heart, they can be more sure of a complete closure. I need to verify this though. What are you thoughts regarding this aspect?
I eagerly await the prospect of feeling good, daily activities are becoming a real struggle because of impaired oxygenation and orthostatic dypsnea. Your website has offered me great support and encouragement.
Thanks, Lisa
Betsy 4:29 pm on April 15, 2009 Permalink |
Hello! What a relief to find this in all this chaos and confusion! Get ready, I need to vent! My husband had a left occipital stroke on March 14. He is 39, and in otherwise perfect health. The neuro sent us to the cardio when he realized it was a stroke, to “find out where this clot could have come from in such a healthy guy”. After thousands of dollars he found a “tiny PFO”…and what really amazed me with your story is that he told us we are a “GRAY AREA”. And said take aspirin. We do not have insurance, but we have paid for all of this upfront. We feel like we are being totally ignored and dismissed. The last we heard, the cardio was going to “discuss” the results of the TEE with the neuro. That was 4 days ago. We are finding that ANY answers we get, we have to call multiple times for, and then they act like we are an annoyance. What is going on here?? IS there any real “health care” in the US?? This has already cost us $15 thousand and my husband is so upset that he hasn’t gotten ANYTHING for it. Also, my husband had NO symptoms, ever. No headaches, no physical problems at all. The only injury is to the left occipital lobe which has taken the right half of each eye’s vision field. And NOBODY has mentioned rehab, we are doing it all on our own through the internet. For 15 grand??? How could this be? Why are we so alone in this?