My Dry Dives and Other Adventures with DCS, PFO and Migraine with Aura

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BubbleBlocker

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I posted this on another forum originally and the consensus was that I should post over here for broader dissemination. Since my report is long, I'll be splitting it into two sections. Hope that's acceptable to do here.

TRIP REPORT: My Dry Dives and Other Adventures

This is a tale of many acronyms: PFO, ASA, ASD, DCS, TEE, TTE and last but not least, DAN. Over the last several years I began to realize that I experienced [usually mild] DCS symptoms on diving profiles that other divers have experienced no problems. As I learned more about Patent Foramen Ovale (PFO) and its increasingly accepted association with migraines associated with aura and DCS, I began to suspect the presence of a PFO in my own heart. A PFO is a type of defect in the atrial wall that can allow blood to pass from one side of the heart to the other without it first going through the lungs, and is commonly referred to as a "hole" in the heart. It was difficult finding a cardiologist who knew anything about DCS or about scuba diving in general, so I kept hitting dead ends when it came to actually being tested for a PFO. This past summer I had a consultation with a cardiologist who agreed to order a transesophageal echocardiogram (TEE) if I insisted but dissuaded me by suggesting that there was no point unless I planned to stop diving if it were positive or if I planned to pay for the closure of the PFO myself as insurance would be unlikely to cover the cost. A previous transthoracic echocardiogram (TTE) had shown everything as normal. A TEE is considered the definitive test for a PFO since the ultrasound probe is inserted down the esophagus and can get a clear picture of the heart and the atriums due to the probe's proximity to the heart. A TTE on the other hand is done via a probe against the outside of the chest, and has to go through muscles and bone for the view of the heart.

Heart interior view:
Heart-interior-annotatedcopy.jpg


Fast forward to November 2008 ...

The Dives and the Diver:

We were diving in Jupiter, Florida and did three dives in the 87 to 98 foot range, surface intervals were 45 minutes to an hour, and water temps were in the 77-78 degree range. The first two dives were the deepest, within a few feet of each other. Visibility was excellent and the currents were relatively mild. We were hunting lobsters and I was swimming hard through all three dives, something I am not normally accustomed to as I'm usually seen carrying a camera vs. a looper and often pausing to take photos. That said, I exercise regularly and am in good shape physically and in good health. I had gotten 8 hours of sleep the night before, was well hydrated and had eaten well the night before and at breakfast. I had a couple of glasses of wine the night before at dinner (about 15 hours prior to the first dive.) Although I was swimming hard through all 3 dives, I felt very good and the dives were enjoyable. I've logged well over 1000 dives all over the world in all kinds of conditions, and was comfortable on these particular dives. In the past year, I had been diving aboard liveaboards in Raja Ampat and the Galapagos without incident, so had no reason to think that 3 dives in Jupiter (all within the limits of my computers) would be an issue.

The only thing unusual about the third dive was that I was feeling extremely over weighted although my buoyancy had seemed okay on the first two dives. However, I was heavier than I prefer to be as I was diving with a heavy steel tank and a pony bottle along with 2 pounds of lead I didn't really need, but which helped to balance things out. As soon as I hit the water, I sank fast and had to add a lot more air in my BC than I had on the earlier dives.

I also was diving with two air-integrated Nitrox computers (Oceanic VT3 and Oceanic Pro Plus 2). Until recently, I had dived for years on Nitrox using air profiles, but had recently gotten the new computers. The bottom line was that I was diving less conservative profiles than I would have in the past. Although I was in the 'yellow' on all dives, no limits were exceeded and I came up slowly, doing both deep stops and full 3-minute 15-foot safety stops. Detailed dive profiles were downloaded from my dive computers.

Post-Dive:

Following the third dive, everything seemed normal at first. I got out of my wetsuit and chatted with other divers, even commenting how good I felt although we had done a lot of diving and had been swimming hard all day. Within about 20 minutes or so of exiting the water, though, I had a migraine with aura (no pain) come on and had wavy lines and bright lights across my field of vision. I also felt a tightening across my chest. It became very difficult to focus my eyes and I had a severe case of vertigo. I had no tingling in my fingers, joint pains, or red blotches. I soon found it hard to hold my head up due to the dizziness and before long I was flat out on a bench with my eyes closed and stayed there until the boat got back to the dock. I could not sit or stand up due to the vertigo. Every time I tried to sit up or open my eyes I felt like I was going to pass out. I was concerned about getting other people worried and just said that I had a migraine which is what I really thought. I thought the visual disturbances from the migraine were causing the vertigo and that I just needed to go lie down for a while.

I needed help to get off the boat and was literally lifted from the boat onto the dock. Through the night, I felt okay as long as I stayed horizontal with my eyes closed. If I stood up the vertigo came on and I had to stumble to the toilet to throw up. By the next morning I was a bit better, but noticed that I had developed pain in my shoulders and upper arms and I'm not certain when that came on. Somewhere along the line I also wondered if the scopolamine patch I had been wearing was causing the vertigo, and took that off. Finally, at some point during the night I started to accept the fact that I was bent and wished I had asked for oxygen on the boat (or someone had overruled me and insisted on it).

DCS Treatment:

I was able to eat some breakfast the morning after the dives sorely needed since my stomach was beyond empty after all the vomiting and called DAN. After hearing my symptoms, Marty at DAN suggested I head to Orlando since that was the closest chamber to where I was in Jupiter. (The chamber in West Palm Beach is not staffed on the weekends. Go figure.) Arriving in Orlando by mid-afternoon the day after the dives, the emergency room staff checked me out and took a chest x-ray and then the hyperbaric team was called in. Although I had an IV, it was never connected so I could be rehydrated. Again, in hindsight I realized that no one offered oxygen. Since it was a Sunday evening, the hyperbaric doc was obviously not happy about having his team called in and reexamined me to make sure I truly did need a chamber ride.

I was in the chamber from about 5 p.m. to about 10 p.m. (Table 6). I was significantly improved when I got out but still had some pain and dizziness. The doctor told me that I had Type II DCS and might have some permanent damage and that I should check with a neurologist when I got home. He also told me I could fly on Tuesday afternoon to return home (it was now Sunday night.) I also was told that I could return the next day to join the group scheduled in the chamber the next morning, but the doctor stressed that he thought this was unnecessary and I would only need to come back if I started getting worse again.

The multi-person chamber at Florida Hospital in Orlando:
Untitled1.png


When Marty called me afterward to follow up, he told me he wanted me to check with a doctor he recommended at Mount Vernon Hospital once I got back to Northern Virginia. I called and made an appointment for Friday, explaining that I had received a Table 6 treatment in Orlando and had been advised to follow up with them. I still had symptoms at this point although they were decreased.

The approach at Mount Vernon was much different than in Orlando. I really can't say enough good things about the staff at Mount Vernon Hospital. I was thoroughly examined and listened to. It was obvious that the Mount Vernon staff felt I should have been treated until I either had no symptoms or until I stopped improving and that's exactly what they set out to do although it certainly would have been preferable if so much time had not already elapsed. I ended up with 4 more Table 5 chamber rides at about 2 hours each over the next 4 days. I was told not to fly for a week, and that I should not have flown home two days after the first treatment. In the end, I had no further arm pain and no vertigo. The brain 'fuzziness' that I had been feeling for days since the incident finally cleared.

One of the single-person chambers at Mount Vernon Hospital:
Untitled2.png


Follow Up: The Root Cause:

The doctor at Mount Vernon and I talked a lot about my previous experience diving and my history of migraines with aura. I also had some arm pain in the past that I chalked up as skin bends (now I realize it was more than that), and have gotten migraines with aura after dives. I would sometimes get them when not diving, but not often. We talked about PFO and the fact that I had looked into getting tested this past summer, but was dissuaded after a consultation with a cardiologist not familiar with dive physiology or medicine. To find the cause for my 'undeserved' hit, I was given a referral for a TEE and asked me to return for a follow up checkup prior to returning to diving.

As I somewhat expected, having done a fair amount of research already, the TEE showed that I have a PFO. At the same time, several people to whom I had expressed concerns regarding the possibility of a PFO had sent me contact information for a cardiologist who is also a technical diver and dive instructor, Dr. Doug Ebersole. I began emailing him as he is located in Lakeland, FL and I'm in Virginia and he was extremely forthcoming in answering my questions and providing information. He also offered to review the CD of my TEE and give his opinion and a recommendation for an interventional cardiologist closer to my home. As it turned out, I had planned to visit family in Florida before Christmas and decided to schedule a consultation with Dr. Ebersole at the same time. When he reviewed the CD, he pointed out that I also had an atrial septal aneurysm (ASA), which is basically a "floppy" atrial wall. Taken together, the two significantly increase the risk of stroke, and likely DCS as well. I was advised that a singular medical procedure could fix both problems and that I should not dive until my PFO was closed. I decided to go ahead with the procedure, so it was scheduled for January 2. I was told that if all went well I could be back in the water in 3 months. That said, my decision to opt for closure as recommended was not solely due to the fact that I wished to continue to dive but also because of the increased risk of stroke the PFO/ASA combination posed.

In the meantime, migraines continued. I'll be very interested to see whether my migraines disappear permanently with the PFO closure.

Here is the device used for closure:
Untitled3.png


As described by the manufacturer, the closure device is a self-expandable, double disc device made from a Nitinol wire mesh. The two discs are linked together by a short connecting waist allowing free motion of each disc. In order to increase its closing ability, the discs contain thin polyester fabric. The polyester fabric is securely sewn to each disc by a polyester thread. It is inserted through the PFO (hole) in the wall dividing the right and left atriums.

The cardiologist planned to go in through the femoral veins (on one side with an ultrasound device and on the other with the closure device via catheter). ). For more info and a simulated demo visit ASD Septal Occluder Placement Video. You also can view a video of my TEE here: YouTube - TEE of PFO & ASA. On the TEE video, the cursor points to the area with the PFO and ASA. Look very closely for the cursor in the left corner of the screen.

(to be continued)
 
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BubbleBlocker

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The Procedure:

On January 2, I checked in at the hospital at about 11:30. After checking in and having blood drawn, I spoke with the doctor again. Everything seemed like it would be straightforward and I was rolled into the catheterization lab. I was prepped and sedated to a certain extent, but was awake for much of the procedure. Right before inserting the closure device via the catheter, the doctor showed me the device he was planning to use. It seemed larger than the sample I had seen in his office, and as it turned out there was a reason for that. Once he had gotten in and looked around, he discovered that I had multiple holes in atrial wall, versus just one. I had what is called a fenestrated atrial septal defect (ASD) that looked like what he referred to as "swiss cheese." By using a larger device (30mm), he was able to cover the entire area and resolve this problem as well as those he already was aware of due to the previous echocardiogram.

You can view a video of the procedure here: YouTube - PFO Closure. It shows the balloons used to measure the size of the hole. (This is how the cardiologist determined there were multiple holes.) It also shows the device being delivered and deployed on either side of the hole.

I was discharged from the hospital the next afternoon, after a transthoracic echocardiogram and a couple of chest x-rays. As I sit here writing just 24 hours after the procedure I feel many emotions. I'm incredibly grateful that I didn't have to wait until I had a stroke to realize I had any of these problems. Having DCS symptoms and migraines was no fun, but it's what got me to start researching heart issues many months ago. I'm also thankful for my close friends and family members who have supported and encouraged me throughout this whole journey. Finally, I'm happy to have this whole chapter behind me, and I look forward to getting back in the water in 3 months! I've have a follow up TEE in March and hope to be diving by early April.

Lessons Learned:

  • If there's even a hint that you (or your buddy) might be experiencing DCS symptoms, breathe oxygen as soon as possible. Assume any post-dive symptoms are dive related and break out the oxygen. It won't hurt and it just might help. And if it helps, then you know for sure that your next stop should be to a chamber.

  • As has often been said, don't hesitate to call DAN or pursue evaluation and treatment. It's lucky that my hit was not worse. (The 'glass half full' part of me says I was lucky to have been hit in the first place as without my visits to the chamber I would not have had the test I needed to diagnose the problem. Previous transthoracic echocardiograms I've had performed showed everything as normal. If I were not a diver, I'd never have known that I had a PFO/ASA/ASD until or unless I experienced a stroke.)

  • Don't assume DCS is always going to appear as painful joints or tingling. In my case, there was no joint pain or tingling immediately after the dives. Most of my pain was in my muscles and tissues and pressure applied to my shoulders was painful and was only noticed the next day; pain was never the primary symptom I noticed. The vertigo and visual disturbances were all I noticed until the next morning, with the exception of the chest tightening I felt early on.

  • Wherever you dive, be aware of the location and availability of the nearest chamber. Even in populated areas don't assume a chamber is nearby or accessible.

  • Never let your DAN insurance lapse. My medical costs just related to the chamber treatment (with no evacuation related costs) easily exceeded $20K.

  • Don't take hearsay as gospel. Don't assume your insurance will not cover a procedure until you ask. Then if you are told that they will not, appeal the decision. Be your own best advocate. You are the one responsible for your medical care.

  • If you end up having to undergo treatment in a chamber, push for treatment until you are better or until you have no further improvement.

  • Don't play doctor. With all I had read, I had come to my own conclusion regarding the prudence of continued diving with conservative profiles. Although I was correct in self-diagnosing the PFO, I had no idea I also had the atrial septal aneurysm which significantly increased my risk. Without the visit to the cardiologist in December, I would have merrily gone on my way, diving until potentially experiencing an even worse hit.

  • All PFOs are not created equal. Some are larger than others, posing more risk. PFOs also get larger as you get older. Further, some are associated with atrial septal aneurysms or multiple holes (as in my case).

  • Don't assume that a TEE will exhaustively show any and all heart related issues. Until the doctor got in during the catheterization, he didn't know the full extent of what he'd be dealing with. That said, a TEE will give a much clearer and fuller picture than a TTE.

  • It's true: Denial is the first symptom of DCI.

Summary of Costs (all approximate; these are billed amounts):

Initial ER visit and chamber treatment: $11,000
Follow up chamber treatments: $9,000
TEE (internal) & consultation: $1,500
TTE (external): Less than TEE (1/2?), but haven't seen bill yet
Consultation & percutaneous closure of PFO: $18,000
Follow-up at-depth test in the Caymans: Priceless!!

There were some additional costs to my treatment not shown (e.g., follow up with a neurologist and brain MRI as recommended by the folks at the chamber in Orlando). The bulk of my costs were picked up by my primary insurance and the others have been forwarded to DAN. I'm hoping to end up with little in terms of out of pocket expenses except for the surgery where my co-pay was about $1000 and will be paid for via my Flexible Spending Account (pre-tax) at work.

Further Reading:

For those interested in more background on PFOs, here is a link to a thread with a post by my cardiologist, Dr. Doug Ebersole, who also is a technical diver, trimix and rebreather instructor: The Deco Stop. Here is a snip from that thread:

"First of all, PFOs are very common. Approximately 25% of all people have them. Also, they can increase in size as we age. To understand them it helps to know how they form. As the wall between the left and right atria form, one half of the wall grows up from the bottom while the other grows down from the top. They do not meet in the middle but actually overlap, forming a "trap door" of sorts. As a fetus, we do not use our lungs as our oxygen is provided by our mother's placenta. The collapsed lungs cause an increase in resistance to blood flow to the right heart and thus the pressures on the right side of the heart increase. This increased pressure "opens" the trap door and allows the oxygenated blood to bypass the unneeded lungs and go directly into the systemic circulation. At birth the lungs expand dropping the resistance and pressure on the right side of the heart and the trap door slams shut. In most people over time the PFO seals shut but as mentioned above in 25% of people it does not. As adults we all have microscopic clots forming in our legs and pelvis that break loose and are filtered by the lungs. As divers we all have bubbles after diving which are filtered by the lungs. The PFO that doesn't seal allows for clots or bubbles to cross over to the systemic side of the circulation and result in strokes or DCS, respectively. Also, as we age the pressure on the right side of the heart often increases somewhat. If the pressure difference between the two atrial (top chambers) decreases, the likelihood of shunting across the PFO increases. This is a possible reason why some people who have had the PFO their whole life don't present with a stroke until late in life.

"All of that having been said, statistics would say that 25% of stroke patients have a PFO and 25% of DCS patients probably have a PFO. This doesn't mean that the PFO was the cause of the problem. It may be a simple association with ablsolutely no "cause and effect" whatsoever. Note that 25% of divers probably have a PFO but the risk of DCS in the diving population is about 1/1000. The numbers don't match up.

"However, for divers with "undeserved hits" especially recurrent DCS with no obvious reason and even more so for technical divers who have much higher "bubble loads", it is my humble opinion (and this is definitely controversial in the literature) that screening for PFO is reasonable, though definitely not mandatory. By far the best test for screening is a TEE (transesophageal echo). This really is not a big deal. It involves intravenous conscious sedation and local anesthetic to spray to the back of the throat. The whole thing takes 10-15 minutes and you go home the same day. The risks are extremely low. As mentioned above transthoracice echo is not a very sensitive or specific test to make the diagnosis. If abnormal it is helpful but a normal study definitely does not rule out the diagnosis.

"Not just the presence of a PFO but also its size and if there is an associated atrial septal aneurysm is quite helpful to know as these features make it more likely that the PFO is not simply an incidental finding.

"Before I recommend closing a PFO in a diver I would like to get a complete history of the DCS event(s) -- single vs. multiple events, deserved or undeserved, neurologic vs. simple skin bends, etc. I then want to see if a PFO is present, its size, determine if there is shunting of bubbles at rest or only with Valsalva, and see if there is an associated atrial septal aneurysm. All of these features go into the recommendation. It's not simply DCS + PFO = closure.

"If closure is recommended, it is a one day hospital stay. The procedure requires intavenous access in the groin (or groins) and takes about an hour. Most patients are treated with antiplatelet agents (aspirin and/or Plavix) for a period of a few months and then, if there is no residual shunting of bubbles, can return to diving."
 
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BubbleBlocker

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The previous two posts have now been edited to include the URLs and photos from the original report.
 
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TSandM

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Beautiful report and discussion. Thank you for putting the work into it, and I'm glad you've had a good outcome from all of this.
 

Tigerman

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Whoa...
Thats certainly one of the best in-depth reports ive read here for a while and certainly something worth reading to anyone who dive and possibly also a lot of doctors, especially the ones who deal with divers but have no experience and/or knowlege with it themselves.
The one thing that bothers me with a lot of doctors is the fact that because they dont understand whats wrong, nothing is wrong.
I was at the hospital once with a friend of mine who had some injuries and the doctor went "wait a minute" and started flipping through his "manuals". Thats not something I see every day and although bizarre, it really was reassuring to see that he accnowledged that hes just human and needed to find the answers elsewhere than in his imagination. He did a good job too.

Thanks for a great report and I wish you a nice recovery.
 

mselenaous

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Thanks for posting your experience so that we may all learn from it. We all tend to downplay the severity of the warning signs our own bodies are telling us until conditions escalate to a more serious situations. Live to dive another day.
 

BubbleBlocker

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I just worked out for the second day in a row since the procedure and feel better than ever. I also haven't had a migraine since then, although it'll take longer for me to draw any definitive conclusions in that regard.

I feel very lucky to have been referred to Doug, and am now looking forward to my next thousand dives!
 
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