Day 13. Trick or Treat? I’ll Take the Treat, Thanks.

Everybody was decked out in orange and the black yesterday at the doctor’s office. Where else would I celebrate Halloween? 

My mom and I were hoping for a very simple re-acquaintance audience at the new Vascular Surgeon, Dr. Cameron Akbari’s, office at Washington Hospital Center. He is not getting a nickname because my instinct tells me he doesn’t need one, kind of like Dr. Francomano. Dr. Akbari is such a lucky find. Tonight I am trying to figure out how I feel about what happened, and if my legs didn’t feel like a hurricane is exploding the power lines of my nerves everyplace, I would be kicking myself.  Why didn’t I go to him for the last three years, instead of those blockheads at the Johns Hopkins University?

I actually met with Dr. Akbari three years ago because my primary care physician recommended it, since, if the worst happened and an aneurysm ruptured, my doctors at Johns Hopkins would be no good to me an hour away (and that’s with no traffic).  Little did I know at the time that they would be no good to me even before the worst ever happened!

Seeing Dr. Akbari again helped take the edge off my worries; his easy-going, kind presence breaks all the stereotypes about vicious, shark-like surgeons. It was particularly nice to see him when I didn’t urgently need him! But let’s not let denial take over: I was there at the behest of Dr. Dreamboat, the pulmonologist, who wanted someone to have a look at the results of my recent Brain MRI/MRA, which I spoke about in my last post. I explained to him that I had a Dissection in my Carotid Artery, a sort of aneurysm that isn’t as severe as the kind I have in my belly, or the one I had in my leg, yet worrisome nonetheless). I had sent the paperwork in to Fairfax Hospital and called ahead on October 8th to be sure that both the report and the disk with the images would be sent ahead of time to Dr. Akbari, so that he could make a considered diagnosis.

Well, for my first trick or treat of the day, I learned that stupid Fairfax Hospital didn’t send the images of the MRI exam I had while I was in the hospital. Trick. Upon learning I didn’t have the images, most doctors would have sent me home and said, “Come back when you’re prepared.”

STILL, I was capable of explaining the issue, right? I told him I had a dissection in my left Carotid artery, enough information, I suppose, to get the ball rolling.

Meanwhile, Dr. Akbari’s nurses called Fairfax Hospital and got the report. Treat. While we were waiting, he sent me for a sonogram of my carotid arteries, so he could have a more immediate view of the dissection. The double treat was that the result was negative.  Or does that make it positive?  The woman who did the ultrasonography was an M.D., super-competent, so it was one of those (unfortunately) rare times when I was able to feel very secure about the results, which indeed were beautiful.  Not a thing wrong.

“Still, there is one thing that could be wrong,” she explained, as I sat up wiping off the warm sonogram goo from my neck.  There is something so….I don’t know….degrading about those moments sitting up dripping with sonogram goo. It is a feeling, I suppose, unique to those who have had a sonogram of the head, neck, or heart. “The problem is that the Carotid Artery doesn’t just begin and end in the neck; it shoots up into the brain, so if they saw a dissection, it could still be in the brain, and if that is the case, I wouldn’t be able to see it with a sonogram.”  Oh….Trick.

Sure enough, after I returned to Dr. Akbari’s office, he was able to read the Brain MRI report from the hospital. While he was still smiling his dazzling smile, it had taken on a note of the “I’m speaking to an idiot” about it. So he says, slowly “You didn’t have a dissection in the Carotid, Heidi.” Trick. “This is a pseudoaneurysm in the brain. And the trouble is, my expertise ends at the shoulders. For the brain, I have to refer you to a neurosurgeon.

Trick. Trick. Trick. 

Tricks are for kids, aren’t they?  You know the ones I mean, the sweet little ones with the shaved heads who look cute on telethons?  I wouldn’t look cute after brain surgery, with a prickly, shaved, fat head and a moon face.  Good Lord.  This isn’t looking good at all.

 I said to myself, “I’ll take a treat, please, God.”  I don’t want to point out the dearth of treats in my life at the moment, people.  I hate to bitch.  I haven’t been writing about the blood thinner I inject into my fat stomach every morning now and the related side effects that are not pretty in any way at all.  In the way of the North American culture of the 1950s, since I have not had anything nice to say, I have not mentioned a word at all about the blood-related messes I undergo. Use your imagination. I feel like I have a daily visitation of the stigmata.

Here’s the story with the aneurysm.  Turns out that between October 21st, when I posted last on this blog and got it right (about my pseudo-aneurysm) and October 31st, when I went to see Dr. Akbari, I completely forgot my diagnosis. That is, it went from pseudo-aneurysm to dissection in 60 mph or less (this hyperlink has a list of definitions related to aneurysms; to read about pseudo-aneurysms and dissections, scroll down to page two in the file). Perhaps I am being hard on myself to expect to remember the difference. It is fairly esoteric. Yet, I find myself frustrated when I “lose” knowledge I had firmly a few days ago without any awareness of it.  That is particularly troubling because I used to grasp knowledge firmly and have confidence that I never would lose it; it never occurred to me that my brain would turn all hole-y and sieve-like before I even reached the age of 50!

Anyway, Dr. Akbari gave me the report, which did help me to understand, and when you read the following crystalline prose, you will understand why. This is the  radiologist’s description of the problem in my brain, along with some pictures that should help with the anatomy:

An MRA imaging of the Circle of Willis demonstrates patency of the intracranial Carotid Artery. There is a broad-based outpouching near the junction of the petrous and cavernous segments of the internal Carotid Artery on the right, protruding anteriorly, suggestive of a pseudo-aneurysm.  Mild fusiform dilation of the contralateral internal Carotid Artery is identified on this level as well.  There is also mild fairly fusiform dilation of the cavernous segment of the internal Carotid Artery on the right.

 So, to split hairs, I was right about the dilation — a mild dilation does exist on the right side, but it is only a minor problem as compared with the patency, or the sort of bubbling out, of the intracranial Carotid Artery and the internal Carotid Artery.  But the end of the report (this is always titled “Impressions”) summarizes the “vascular abnormalities,” and then, to conclude, points out “There is no stenosis.”  When I looked up stenosis, I learned how important that statement is: it means there is no plaque in the arteries, no fat in there (no prime rib, no bacon, no cheddar cheese, pork roast, or, most certainly, no turduckey). When that is present (particularly with the previously described vascular abnormalities), the potential for stroke is high. Good God!  That is all I need.

Good luck, meat eaters!

The plan now? I have to make an appointment with the neurosurgeon (after I finally get a copy of the MRI/MRA images).  However, Dr. Akbari wouldn’t let us leave without saying a few words, and when you read them, you will understand why he didn’t merit a nickname:

“You are not a walking time-bomb, Heidi. Listen, I do this all day, and many times a day I tell people, ‘Look this is a very serious condition, and you need to be extremely concerned.’ That’s not what I am saying to you. Believe me. I would say that if it were true.”  I was so grateful for that comfort! “Now,” he added, “that isn’t to say that you do not need medical care. It is important that you see the neurosurgeon to find out whether you need a procedure, or how he wants to handle it, but this is a small thing.”  

Treat. I think.

Frankly, I was glad to take down the Halloween wreath this morning and put away the Halloween socks.  I am hoping that this year’s tricks are behind me and that I’ll be living in Treat City until my birthday….and beyond.

How did you spend your Halloween?

Day 290. A Taste of the Last Ten Years

So for the last fifteen years at least, my body has mystified me…and the doctors.  It’s been a time of frustration, worry, tears, and as a result I have become a de facto junior medical researcher, by way of the many sleepless nights in pain spent in front of Google, searching for a reasonable solution to the puzzle of what ever could be wrong with me.

That’s easy to write, even easier to read and dismiss. But in the middle of that great desert of agony were deep mines misery of that looked like this:

A terrible, frightening symptom appears, and it persists.  Let us say it is headaches, and I don’t mean tension headaches we all get (I get those too).  These are headaches that feel as though my head will explode (remember this detail:  it will be important much later).   Screaming, crying, crawling on the floor, vomiting, vision blurring, halo-seeing, temporarily blind, memory stealing, cognitive function stealing, fucking horrible headaches.  Forgive my profanity please, but one bit of advice (my conservative mom!) gave me to help get rid of pain was to swear about it.  

So a general practitioner doesn’t know what to do with this kind of pain.  I probably saw ten or twenty of these doctors.  What bothered me is that as soon as they heard the word “headache,” it was like their ears turned off. Right away, they gazed at me in that sort of suspicious way from under the eyebrows:  they didn’t see a pain sufferer, but rather a drug seeker.  Who could blame them when their professional journals (you know, like the Journal of the American Medical Association) seem to focus so closely on the overuse of opiates (drugs like Vicodin and Percoset)?  No question that people like to pop the Percoset. Furthermore, the average person can easily feel slightly superior to the an opiate addict, who after all is just a stone’s throw from a heroin addict, and may shake hands with one who can’t get some heroin.  

All this judgment is easy…until we need those very drugs ourselves.  I learned that quickly. However, I hadn’t reached that point early on with the headaches. I just wanted help, as in, “Tell me, doctor, what you know that I do not, so that I can get rid of these *(&^%$ headaches!”  Finally, I reached the point where I would start a doctor appointment this way:  “Doctor, I am not seeking opiates from you.  I am here to ask you to help me solve my problem.”…Too bad none of them ever did.  

So, since none of them suggested it–remember, I was a woman in my mid-thirties, a ripe age for “complaining.”  Studies show that younger women and men with the same complaint get completely different responses from many doctors.  Remarkable, isn’t it? None of this is anyone’s fault, though, I’m convinced.  I’m just saying. Since none of them suggested it, I referred myself to a specialist.  

 I had nothing but time, mind you.  I anticipated living to a ripe, old age back in the early 1990s.  There were days when I might have paid to shorten my life, but it never occurred to me that I might have more wisely rushed things along…that I might be writing to you today, with fewer than 290 days left to live.

To get an appointment with a specialist, in this case a neurologist, takes three months.  Frankly, they are the absolute worst of all the specialists: hardest to see, least adept at problem-solving.  Indeed, if the topic here were neurologists, I could tell you the most horrific bedside-manner stories about them. I know better, though, because there must be some great neurologists out there that I just didn’t meet.  I am sure of it.  The system is flawed, though. My point is that it took nine months to see a neurologist enough times to have tests and do a realistic medication trial of a single drug.  Besides, what if I had an after hours emergency, like a drug reaction (that happened several times)?  Forget calling a neurologist. The one time I was fortunate enough to see one through a university hospital, a resident doctor on call answered after hours and tried to help, which was a good thing.  However, a private practice neurologist disturbed on a weekend did answer, but she was extremely unkind about it.  Now, as a result of her unkindness, if I decided not to work with her, then another year of testing and trials with the new neurologist would (and did, several times) pass.  This was my life, through all the specialists, good and bad.  (By the way, I have really great health insurance, through a PPO, meaning I get to choose my doctors, so I was able to do a TON of research before I choose a doctor.  I know of what I speak because I had an HMO long ago, and that was true quicksand.  In that case, I didn’t have the opportunity to do that kind of lengthy research to find the right doctor; I just got whatever doctor was chosen for me: typically that would be “unluck” of the draw.  

The neurology carousel, that troubled system, meant that if I had an unusual symptom, I would likely never find a doctor or a nurse who could help or explain it to me.  If I had an exacerbation of severe days-long headaches, or allergic reactions to medicines at inconvenient times, too bad, particularly if they were outside of the three-month cycle of trying to get an appointment.  Furthermore, the specialists offered few possible diagnoses; if I didn’t have a symptom set that fit into those possibilities, then the doctors were not interested in working further with me to determine the diagnosis.  I never found a doctor that was interested in doing serious differential diagnosis. After all, headache patients are known to neurologists (and other doctors) to be a hassle.  Ironic, huh?

I tell all this because I had so many symptoms that encompassed so many specialties for so long that it baffled everyone I knew–to the point that it truly seemed I had made it all up to be appalling.  

However, this Wednesday, after being sick for all these years, and having had a ruptured aneurysm three years ago, and finally the informal, de facto diagnosis of Vascular Ehlers Danlos Syndrome, I got to see an amazing geneticist, Dr. Clair Francomano, in Baltimore Medical Center (at the Greater Baltimore Medical Center, which appropos of nothing is very chichi).  Dr. Francomano (I can’t believe I’m saying this) was every bit worth the wait. For the first time in my life, someone understood every single one of my symptoms and was able to make diagnoses and solve problems in sensible ways I never thought would be possible.  We met one time.  ONE TIME.  It was long.  Four hours.  That’s long for anyone, but for me, it was an endurance (pain) test.  I didn’t mind a bit.  The whole time, it felt like my body was electric.  It was.  It was plugged into a grid of unbelievable brain power, caring, and intention to help.

Tune in next time for what it was like to meet the geneticist….

Day 358. Thanks, Dr. Katzow.

Well, it’s all over.

My psychiatrist divorced me the other day.  Dr. Katzow is the smartest, most insightful doctor, a terrible loss.  I had heard that he wasn’t feeling as well as he used to, so I might have foreseen this terrible day coming.  The thing is, he looks so good that I found denial an easy state to rest in. How ironic, in fact, that I would make the very mistake that bothers me so much when others make it about me!  When I hear someone say, “Oh Heidi, you don’t look sick; you couldn’t possibly feel bad,” it irks me something fierce.  I did the same thing to Dr. K., clearly a life lesson, that it isn’t that people don’t believe me as much as people don’t want me to be sick.

I saw Dr. Katzow for at least seven years that I can remember (that’s as far back as iCal goes), certainly through the worst of my health problems.  My allergist referred me to him because Dr. K is well-known as a specialist in treating mood disorders. All he does is psychopharmacology (and some intense therapy with “extremely involved” patients, as he termed them). However, my saying “all he does” makes it sound as though psychopharmacology is simple.  It isn’t.  It is endlessly complex.

Dr. K. has the most fantastic office on Washington Circle, in Washington, D.C., right across the circle from The George Washington University Hospital, to put it into perspective. His office is one of several medical practices in an otherwise residential building, so it has some unique characteristics, the coolest of which is a fireplace in Dr. K.’s office.

The office’s unique character reflects the doctor’s remarkable personality: Dr. K. has always seemed to me like an intellectual apothecary, with a mortar and pestle, grinding up precise doses and mixtures of drugs in a back room someplace in his office.  Of course, he doesn’t really mix up doses in the back office, but he knows every medication and its characteristics like it is a close family member. Thus, he can adjust doses so precisely that he can treat someone who is depressed, yet fiercely unable to sleep and somehow manically nasty.  He gives just enough medicine to raise the depressed mood and at the same time calm those manic, dysphoric feelings. He knows how a mood disorder whacks a person out. I am told. Not that I know anything about this. Other doctors, again, I am told, can’t figure out something so complex.  They hand out the Wellbutrin or the Prozac and send you on your way.

Dr. K. really does manage doses like an apothecary. For treating a complex situation, he sometimes is so precise that he instructs one to open up a capsule and dump out a quarter of the contents of the lowest available dose. The result of such tinkering is one’s genuine stability, as much as the extenuating circumstances of life allow.  He is similarly precise with his analytical skills. I have always been able to tell that he knows better than I do how well I am doing, and there is something unbelievably comforting in that, far better than medicine.

The real service Dr. K. has offered me, though, has been regular support and advice about the medical odyssey I am navigating.  More often than not I have come in and cried, telling him about the newest doctor who has misunderstood me, or the way the pain simply will not go away and that no one would believe me.  For quite some time, we explored  the possibility that anxiety and depression can cause chronic pain, for no reason anyone can explain.  In fact, I had finally decided that he was right (just before the aneurysm); he was the only doctor who presented that idea while still encouraging me to find out what was wrong with me because he didn’t think that there was any reason having pain from depression meant that I didn’t have some other disease. He probably is right. However, it is impossible now to decide whether the depression came first, or the pain and agony from headaches and neuropathy.

Just recently, while I was working on a chapter of my book called “Chasing a Diagnosis,” I tried to calculate the number of doctors I had to see before I finally got my diagnosis of VEDS.  I have seen doctors in 20 different specialties, and within those specialties, I have sometimes seen two or three different doctors each. That means, conservatively speaking, I have seen between 30 and 40 doctors during the time I have been Dr. K.’s patient.

He sometimes strongly supported my decision to stop seeing a certain doctor (and many of us know how psychiatrists are frustratingly opinion-less on nearly everything).  Other times, he would give me ideas of questions to ask, or medications I should ask the doctors to consider.  He was a fantastic consultant, and he led me down many of the right roads.

For this reason, he felt more like a family member than a doctor.  For this reason, he is not replaceable.

How am I to call my insurance company and ask for a mood disorder specialist/apothecary/expert in all the body systems/health care consultant/member of my family/and genuinely kind, avuncular man who I genuinely adore?

When Dr. Katzow stops practicing, there won’t be another like him.