On Tuesday, 17 March I went to UCLA to talk to their specialist about closing my PFO. At least, that is what I thought was happening.
I was extraordinarily excited to see this doctor at UCLA. Of course, UCLA has a great reputation. They are a teaching hospital, they attract some of the best and brightest doctors in the world to their programs. All of the research I had done on PFO closure had been published by Cleveland Clinic in Ohio, a premier cardiac hospital in this country, but if anyone on the west coast and certainly in the Los Angeles area (where I live) is capable of performing the same procedures it has to be UCLA right?.....Right?
When I was ushered into the room there were two Doctors sitting in the room eager to meet me. That alone was a bit of a red flag. I was there to meet Dr. Jonathan Tobis who has a rather impressive resume and is the only doctor at UCLA dealing with PFO closure. Dr. Tobis was one of the two in the room along with a resident who was assisting him. The review of my condition, watching of my TEE film and discussion of options quickly blended into what felt like a sales pitch for the Clinical Trial or "Study" that it turns out I am a perfect candidate for.
UCLA is performing a study to help qualify a new device that "could potentially" be used for PFO closure if it is ever given FDA approval. The Doctor Went on to tell me that the FDA has not approved ANY devices for the closure of a PFO in this country. He told me that if I join the study I would get a 50/50 chance. Half the study participants would get drug treatment and half would get surgery using a "new" device unlike the one that Cleveland Clinic uses and has had great success with already. 50/50 odds when I already know I need to have my condition fixed and I do not want to be on drugs for the long term are just not acceptable.
So I left UCLA that day a bit disheartened, pardon the pun. The next morning I called a phone number that was on one of the pages I printed out from Cleveland Clinic. I just randomly cold called hoping to get some answers. To my surprise, I did. A very helpful guy told me everything I could have ever wanted to know over the phone. He told me that it is true that the FDA does not want to approve a device for PFO closure because it is a "common" defect and only a small percentage of those with the problem suffer ill-effects. But the fix can be done using devices that are perfectly safe and approved for use in the heart for the repair of an Atrial Septal Defect (ASD). They use these devices "off-label" to seal a PFO rather than the ASD.
The guy from Cleveland told me that they are also involved in studies to get devices approved for sealing PFO, but given my condition they would not hesitate to offer me the choice to join the studies or to just GET IT FIXED using the tried and true methods. He also told me that UCLA should have offered me a similar option rather than only offering me the study. In my mind, that confirmed my bad feelings about that experience.
So I went back to doing some research and found an article from a few years ago wherein a doctor at Cedars Siani performed a PFO closure using the same techniques, using the same device that Cleveland Clinic uses to treat someone within my same age range. Not a study, not some trial to get something approved, not horrible drugs but a fix and the guy is doing great now. Immediately I contacted Cedar's and began asking them questions. They told me that the doctor in the story is indeed THE ONLY doctor who has done PFO closure for them. The only problem is that he is out of the country and does not come back till 15 April. So I will see him on......guess when......15 April. I am being cautiously optimistic, because I know how my optimism turned out with UCLA. Till then, I will continue with the horrible drugs and keep moving forward.
If Cedars does not work out, next stop......Cleveland.
Friday, March 27, 2009
Thursday, March 19, 2009
A Hole in my Heart.....Literally
It's been a long time since my last post: Hopefully this explains why successfully and with any luck there wont be such a gap again.
Irony is a bitch:
Just a few hours after that last post, I had another TIA. Only much worse. Just after midnight Monday night / Tuesday morning (however you want to quantify it) I woke up feeling that oh so familiar "something is very wrong" sensation. The entire right side of my body was completely numb. From my face all the way down to my foot, everything was numb. I knew immediately what was happening. Of course knowledge turned to fear as I had just experienced a TIA within the last 24 hours, could this be a massive stroke coming to do me in at last?
I woke my wife up, rather ungracefully, and called my neurologist right away. He told me to head to the emergency room and that he would call ahead, get me thru the wait and get me admitted. When we arrived, we made our way thru the metal detector and the human wasteland that is the Antelope Valley Hospital emergency room and got to the check in window. I announced that my doctor should have called ahead for me.
The woman at the desk asked me what I was there for and I told her I was suffering either a stroke or a TIA. She said "Well its not a stroke, if it were you would not be able to talk". I then said "really? I've had 5 of them, how many have you had?" and that seemed to get things moving. True to my neurologist's word, we were ushered right thru and did not wait in the ER waiting room at all. We were taken back to an ER bed immediately and I was given the requisite blood thinners and bevy of tests.
A few hours later I was taken upstairs to the room they had waiting for me and was told that an MRI was scheduled for the morning. The night RN urged me to try to get some rest, which is of course impossible. A hospital is no place to rest and get well.
The next morning I was taken for an MRI and an MRA which I had never had. The MRA basically looks at all the blood vessels in the brain using the MRI machine. Luckily the results of both were negative. Meaning there was no new damage. The numbness had already begun to fade and was now just in my right cheek, hand and foot. Classic TIA. What a relief.
Later that morning, my cardiologist stopped by to see me. He said that since I am already in the hospital, he wanted to go ahead and perform the TEE test that we had scheduled for Friday but to move it to the next morning. Since I already have a room, and some comfy clothes on, we might as well take advantage.
TEE:
So the procedure went smoothly, there were no complications or mishaps. Afterword in recovery, the tech asked me if the Dr. had come by to see me to discuss what they had found...nope. That sounded ominous. Then the nurse did the same thing. Now curiosity is setting in as anaesthesia is wearing off.
Later on, back in the room, a hematologist came by to see me. He told me that the cardiologist had found a PFO (Patent Foramen Ovale). A PFO is a small hole between the two atriums of the heart. Everyone has it in the womb, its necessary before birth but after birth it is supposed to seal shut and in most people it does. It is estimated that anywhere from 12-15% of the population at large walks around with a PFO, but very few of those people every suffer any ill-effects from it.
In my case, this hole between the atriums allows bad blood and small clots from one side of my heart to escape to the other side. This bad blood and these small clots then travel to the good side and then straight to the brain. Small clots going thru the brain equal TIA or Strokes. PFO is also related to migraine. In many studies the relationship is huge.
What Now?
Wow. A reason. It was a shock to hear that I had a hole in my heart but at the same time it was almost a relief. Now there is something tangible something that we can see. Something we can fix? As soon as I heard the words, I called my wife, I called Friends at work and got everyone researching. Looking for everything to do with PFO.
We found all kinds of literature from the Cleveland Clinic about PFO and what they are doing to close them now. There is some encouraging information and recovery time is minimal because they can do it thru a cath now. The Doctors set me up to see a specialist at UCLA just as soon as I got out of the hospital (More on that in the next post).
Knowing my condition, the doctors put me on Coumadin (a gnarly anti-coagulant) which makes you live like your in bubble wrap. I cant do anything I like to do. Nothing very active that can cause bruising or god forbid, bleeding. Mountain biking is out, Kickboxing is out, BJJ is out. I cant do anything that involves risking bruising or bleeding. Its like being in prison. The sooner I can get this stuff fixed and get off the drugs, the better.
So late Friday night(March 13) , around midnight I escaped. I was finally released from the hospital. I was given my orders to see UCLA the following week about patching the hole in my heart, I was given my prescription for Coumadin and I was told to come to the lab every day so they can draw blood to check its level in my system. It was quite an ordeal but at least I have some answers. After three years of strokes for no good reason, I finally have something to actively pursue.
In my next post I will talk about what happened at UCLA and just how much of a pain it is to try to find a good place to get a PFO closed. Lesson learned....don't mess with Irony, it will get you back.
Irony is a bitch:
Just a few hours after that last post, I had another TIA. Only much worse. Just after midnight Monday night / Tuesday morning (however you want to quantify it) I woke up feeling that oh so familiar "something is very wrong" sensation. The entire right side of my body was completely numb. From my face all the way down to my foot, everything was numb. I knew immediately what was happening. Of course knowledge turned to fear as I had just experienced a TIA within the last 24 hours, could this be a massive stroke coming to do me in at last?
I woke my wife up, rather ungracefully, and called my neurologist right away. He told me to head to the emergency room and that he would call ahead, get me thru the wait and get me admitted. When we arrived, we made our way thru the metal detector and the human wasteland that is the Antelope Valley Hospital emergency room and got to the check in window. I announced that my doctor should have called ahead for me.
The woman at the desk asked me what I was there for and I told her I was suffering either a stroke or a TIA. She said "Well its not a stroke, if it were you would not be able to talk". I then said "really? I've had 5 of them, how many have you had?" and that seemed to get things moving. True to my neurologist's word, we were ushered right thru and did not wait in the ER waiting room at all. We were taken back to an ER bed immediately and I was given the requisite blood thinners and bevy of tests.
A few hours later I was taken upstairs to the room they had waiting for me and was told that an MRI was scheduled for the morning. The night RN urged me to try to get some rest, which is of course impossible. A hospital is no place to rest and get well.
The next morning I was taken for an MRI and an MRA which I had never had. The MRA basically looks at all the blood vessels in the brain using the MRI machine. Luckily the results of both were negative. Meaning there was no new damage. The numbness had already begun to fade and was now just in my right cheek, hand and foot. Classic TIA. What a relief.
Later that morning, my cardiologist stopped by to see me. He said that since I am already in the hospital, he wanted to go ahead and perform the TEE test that we had scheduled for Friday but to move it to the next morning. Since I already have a room, and some comfy clothes on, we might as well take advantage.
TEE:
So the procedure went smoothly, there were no complications or mishaps. Afterword in recovery, the tech asked me if the Dr. had come by to see me to discuss what they had found...nope. That sounded ominous. Then the nurse did the same thing. Now curiosity is setting in as anaesthesia is wearing off.
Later on, back in the room, a hematologist came by to see me. He told me that the cardiologist had found a PFO (Patent Foramen Ovale). A PFO is a small hole between the two atriums of the heart. Everyone has it in the womb, its necessary before birth but after birth it is supposed to seal shut and in most people it does. It is estimated that anywhere from 12-15% of the population at large walks around with a PFO, but very few of those people every suffer any ill-effects from it.
In my case, this hole between the atriums allows bad blood and small clots from one side of my heart to escape to the other side. This bad blood and these small clots then travel to the good side and then straight to the brain. Small clots going thru the brain equal TIA or Strokes. PFO is also related to migraine. In many studies the relationship is huge.
What Now?
Wow. A reason. It was a shock to hear that I had a hole in my heart but at the same time it was almost a relief. Now there is something tangible something that we can see. Something we can fix? As soon as I heard the words, I called my wife, I called Friends at work and got everyone researching. Looking for everything to do with PFO.
We found all kinds of literature from the Cleveland Clinic about PFO and what they are doing to close them now. There is some encouraging information and recovery time is minimal because they can do it thru a cath now. The Doctors set me up to see a specialist at UCLA just as soon as I got out of the hospital (More on that in the next post).
Knowing my condition, the doctors put me on Coumadin (a gnarly anti-coagulant) which makes you live like your in bubble wrap. I cant do anything I like to do. Nothing very active that can cause bruising or god forbid, bleeding. Mountain biking is out, Kickboxing is out, BJJ is out. I cant do anything that involves risking bruising or bleeding. Its like being in prison. The sooner I can get this stuff fixed and get off the drugs, the better.
So late Friday night(March 13) , around midnight I escaped. I was finally released from the hospital. I was given my orders to see UCLA the following week about patching the hole in my heart, I was given my prescription for Coumadin and I was told to come to the lab every day so they can draw blood to check its level in my system. It was quite an ordeal but at least I have some answers. After three years of strokes for no good reason, I finally have something to actively pursue.
In my next post I will talk about what happened at UCLA and just how much of a pain it is to try to find a good place to get a PFO closed. Lesson learned....don't mess with Irony, it will get you back.
Monday, March 9, 2009
Postponed TEE and More De-De-De
March 9, 2009
Today was supposed to be the day of my TEE (Transesophogeal Echocardiogram) test. That got put on hold because last night I had yet another TIA (Transient Ischemic Attack) or mini-stroke. This one was not as severe as the others I have had in the past but it was pretty darn alarming.
It started off with my wife noticing me rocking side to side for quite a long time before the actual attack happened. I though I was sitting perfectly still but her cell phone video tells a different story. When the attack struck, I basically felt like I was drunk but without the benefit of getting drunk the fun way. Dizzy and a bit disoriented. This morning before I went to the Doctor's I actually stumbled over myself a bit.
So rather than having the TEE test today, it was back into an urgent care, another CAT scan, another visit to the Neurologist and on and on. So the Neurologist said that this one was definitely just a Migraine induced TIA and the CAT scan showed nothing. So, there is no need to get all worked up over it, you know except for the fact that it was a mini-stroke!!!
So the TEE will now be on Friday morning. We'll see how that goes. The Neurologist repeated again today that he does not want me doing BJJ at all. He asked if "there was some other sport" I could get involved in. It seems easy for someone who doesn't know to say something like that doesn't it?
Not giving up. Keeping my goals in mind. I will be back on the mats. I will beat this.
Today was supposed to be the day of my TEE (Transesophogeal Echocardiogram) test. That got put on hold because last night I had yet another TIA (Transient Ischemic Attack) or mini-stroke. This one was not as severe as the others I have had in the past but it was pretty darn alarming.
It started off with my wife noticing me rocking side to side for quite a long time before the actual attack happened. I though I was sitting perfectly still but her cell phone video tells a different story. When the attack struck, I basically felt like I was drunk but without the benefit of getting drunk the fun way. Dizzy and a bit disoriented. This morning before I went to the Doctor's I actually stumbled over myself a bit.
So rather than having the TEE test today, it was back into an urgent care, another CAT scan, another visit to the Neurologist and on and on. So the Neurologist said that this one was definitely just a Migraine induced TIA and the CAT scan showed nothing. So, there is no need to get all worked up over it, you know except for the fact that it was a mini-stroke!!!
So the TEE will now be on Friday morning. We'll see how that goes. The Neurologist repeated again today that he does not want me doing BJJ at all. He asked if "there was some other sport" I could get involved in. It seems easy for someone who doesn't know to say something like that doesn't it?
Not giving up. Keeping my goals in mind. I will be back on the mats. I will beat this.
Thursday, March 5, 2009
Some Answers...More Questions
Cardiologist (3/5/09)
Got some test results today. Saw the cardiologist and found out I have a "leaky valve". While this is not the cause of my strokes it is a reason for my getting gassed way easier than most guys do even though I do a bunch more cardio type activity (all the cycling). While this is interesting and something to look at in the future, its not a big concern at the moment. For now, we need to find the root cause of my strokes.
The Echo cardiogram of my heart did not show a Ventricular Septal Defect (VSD) outright. It did show enough areas of concern, like the leaky valve, for the doctor to decide to proceed with the Trans esophageal Echo cardiogram (TEE) test. This should be a fun one. Basically, I go into the hospital, get knocked out and they shove an ultrasound device down my throat. They will be able to look at my heart from inside my digestive tract. It is basically an echo cardiogram from the inside. Freaky.
The good news is that if I do indeed have a VSD they will see it and we will be able to do something about it. Who knows what they will find. Perhaps nothing. If so, we are back to square one with the neurologist and the assumption that it is all in my head....in a manner of speaking.
Oh, and my blood work was just dandy. They took gallons and tested for everything under the sun, at least I know that I don't have anything odd at all. Dr.House would be so disappointed to have me as a patient as I don't think that even he could think of any other blood tests to run.
I have this surgical TEE test on Monday morning and a follow-up with the cardio doc on Wednesday afternoon. An appointment with the neurologist follows in the week shortly thereafter. With any luck answers are near, and a permanent regime of preventive measures as well.
Wish me Luck. And a big thank you to everyone for your support. It really means a lot to me. It can be a drag to keep plugging thru this muck but your well wishes have made it a bit easier. Thanks again.
Got some test results today. Saw the cardiologist and found out I have a "leaky valve". While this is not the cause of my strokes it is a reason for my getting gassed way easier than most guys do even though I do a bunch more cardio type activity (all the cycling). While this is interesting and something to look at in the future, its not a big concern at the moment. For now, we need to find the root cause of my strokes.
The Echo cardiogram of my heart did not show a Ventricular Septal Defect (VSD) outright. It did show enough areas of concern, like the leaky valve, for the doctor to decide to proceed with the Trans esophageal Echo cardiogram (TEE) test. This should be a fun one. Basically, I go into the hospital, get knocked out and they shove an ultrasound device down my throat. They will be able to look at my heart from inside my digestive tract. It is basically an echo cardiogram from the inside. Freaky.
The good news is that if I do indeed have a VSD they will see it and we will be able to do something about it. Who knows what they will find. Perhaps nothing. If so, we are back to square one with the neurologist and the assumption that it is all in my head....in a manner of speaking.
Oh, and my blood work was just dandy. They took gallons and tested for everything under the sun, at least I know that I don't have anything odd at all. Dr.House would be so disappointed to have me as a patient as I don't think that even he could think of any other blood tests to run.
I have this surgical TEE test on Monday morning and a follow-up with the cardio doc on Wednesday afternoon. An appointment with the neurologist follows in the week shortly thereafter. With any luck answers are near, and a permanent regime of preventive measures as well.
Wish me Luck. And a big thank you to everyone for your support. It really means a lot to me. It can be a drag to keep plugging thru this muck but your well wishes have made it a bit easier. Thanks again.
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