One ligament to bind them

Last Thanksgiving, I spent hours making a tasty onion recipe and then when I handled a turkey at arm’s length, I felt a “pop” and my neck and elbow started to hurt like crazy. I treated this on my own for a bit, and then eventually saw my regular physiatrist, who diagnosed me with tennis elbow, gave me an OT routine and a brace, and told me to otherwise rest (making me completely nuts).

Rest was making me nuts because it was no biking, no exercise, and worst of all, no drumming! Augh!

So after roughly four months of that, a cortisone shot, and some custom bracing, I still wasn’t getting better. I also was getting really frustrated because the treatments and descriptions of tennis elbow all referred to wrist-based flexion problems, and yet I was also having pain when I did things with my wrists In a neutral position (like tie my shoes, lift a glass, or pull my pants up).

So the OT gave me a referral to a different physiatrist who did sports medicine – Dr. Victor Ibrahim, who is the doctor for DC United, and of course his is a non-insurance practice.

But when we went in – I had asked Sarah to come with me as a second pair of eyes – I noticed a difference: I described my history and asked “what treatment should I be doing?”

His response was “well, when you have a treatment which isn’t working, either you need to change the treatment or you have the wrong diagnosis. Let’s confirm your diagnosis.”

And so we went to the ultrasound machine, the first imaging used in the $5000 of treatment I’d had for this elbow, and he said almost immediately “I see the issue- your tendon is inflamed, but the one below that – the one which controls pinching motions of the fingers- it’s torn through” and of course no amount of OT will rehab a torn tendon – it will generally make it worse! He kept looking, and also saw that the ligament at back of my elbow (the UCL) was also torn through- he showed this by pulling my arm while under ultrasound- you could see inflammatory goop shoot out (ew), and even visually you could see a radical difference between my right (bad) and left (good) arms- my right arm basically looked like it came out of joint. Dr. Ibrahim said that this sort of damage probably built up over a while, so it wasn’t like this was something which I had done in the last four months while attempting to rest.

So this is a spectacular misdiagnosis, and is exactly the type of thing which could have been prevented (along with spending thousands of dollars of my own money, and thousands of dollars of UHC’s money) if the diagnosing physician had used imaging. Now, I know that there is a push to do exactly the opposite in the name of cost reduction, and that’s one of the reasons why I thought it was so important to document precisely what happened here: lack of information at the outset led to an incorrect diagnosis, led to lots of expensive, ineffective incorrect treatment (and lots of patient suffering).

So back to Dr Ibrahim. He gave me some options, which he listed from most invasive to least invasive:

  • I could have a Tommy John surgery, guaranteeing that I wouldn’t have a 95 mile-per-hour fastball ever again (because that is a worry- I’m certain I can get at least a 9.5 mile/hour fastball within a radian of my target…)
  • I could have a stem cell transplant, where they perform liposuction, spin off the fat, do some magic and turn it into stem cells which regenerate the tendon and ligament. Science!
  • PRP – he recommended against this because spinning my own plasma and injecting it into the joints could further spread babesia and Lyme, which meant that he got a gold star for caution in my book
  • prolotherapy – this is an injection of dextrose into the ligament and/or tendon which can trigger an inflammation and cause healing. Mechanism of action is unknown, but hey, it is with aspirin too, so not such a shock.

Sarah has had both prolo and PRP, and they’ve done wonders as stabilizing her pelvis is concerned, but she described them as excruciating.

Dr Ibrahim offered me these choices, but recommended prolo- and amazingly, when I accepted that option, was willing to do it right then (!) and doesn’t even charge for it (!!) [his argument is that the cost of dextrose and a syringe is next to nothing, so should be included in the office visit]. So I had a few shots, and they hurt about as bad as you would expect a gigantic needle being shoved into a torn tendon to hurt- which is to say, OW. I’d put it about a 5 on my pain scale, but that’s only because the testicular torsion blows everything else out of the water as a 9 (I presume 10 would be my head spinning around Exorcist-style).

So after painful things it takes me a few minutes to recover, so I was lying down, and Sarah was talking to Dr I about the pain in her arms, and her Lyme disease. He said, “let me take a look at those” (!!!) and proceeded to ultrasound her arms (the first imaging ever done on her arms, which have caused her disabling pain for 7+ years) where he then said “I see a whole lot of scar tissue- this looks like the type of stuff that can be caused by infectious disease- this looks excruciating”. At this, Sarah started crying, because this was the first real validation she had ever gotten that there was an actual physical, measurable, objective source for the pain she has been in for most of a decade. The real kicker was when he said:

there is something we can do to remove the scar tissue and make you feel better.

Holy $h!7! Really?

The treatment is called a debridement, and basically it’s an injection of some goop which dissolves scar tissue and allows the body to function normally.

Woah.

So we scheduled a follow-up- a joint appointment where Sarah would get a debridement and I would get another prolo if necessary (expected). That was last week.

I had my second course of prolo- it turned out that my UCL only needed one (yay!) and my tendon seems to be doing pretty well. Sarah, on the other hand got under the ultrasound, and her sinovium lit up like a Christmas tree – Dr I said that this was likely active Lyme. He said that the risk of doing the debridement when the infection was live like that was really high, and could leave her bedridden, which would be intolerable, so he had to delay her treatment. Mega-bummer.

But it does impress me all the more, that here you have someone who was all ready to perform a weird procedure on someone, and then didn’t, because he didn’t feel like it would be in the best interest of the patient. Yay Hippocrates!

And He saw our affliction

And He saw our affliction (Deut 26:7) This refers to the disruption of family life as it states, “And God saw the Jewish people and God knew.”
Passover Haggadah

It is no news that Sarah and I have been going through the amazing suck-fest that is infertility for the last several years.

There’s a lot of moments of trying to hold it together while acquaintances are gushing about the latest {pregnancy | childbirth}, (the friends mostly don’t do that to us) and there’s the pit in the stomach that comes once that gets started – the sense that this is not going to be a good night. There’s the intrusive medical stuff – shots, pokes and prods, testing, monitoring and sampling, the mind-numbing expense of it all, but the worst for me is the question of why God puts this particular barrier in our way – given that the first commandment is to be fruitful and multiply, how is this fair at all?

And then I beat myself up for asking about fairness – because honestly, I’ve had more than my share of blessing in this world, and “fairness” would mean that all I should get is an unmarked grave. Didn’t the patriarchs and matriarchs all face this? Yes, but according to the text they were pissed off too, so maybe that’s okay.

So what’s new in this is that Sarah and I have finally come to believe that IVF is the way we need to go. Sigh.

There’s perfectly valid medical reasons for this, and we’re investigating multiple options for clinics.

Now, this morning, I mentioned this to someone, and s/he told me “you can always adopt”. I presume s/he was trying to offer helpful advice, but s/he was actually being extremely hurtful. I pulled him/her outside and corrected him/her privately, and let the person know why that was such an unhelpful suggestion.

First, neither Sarah nor I are genetic snobs – we both believe that love is thicker than blood. I learned this from my maternal grandparents zt”l (may the memories of the righteous be for a blessing) – our family would routinely pick up “strays” for lack of a better word – family friends, distant cousins, in-laws, out-laws, etc, and then a gathering just wouldn’t be complete without them. This is a characteristic of my grandmother in particular which ranks her as a person whom I want to emulate – she and my grandfather are two of the finest human beings I’ve ever known. Sarah and I have long said that we want to be parents more than we want to be pregnant, so adoption was certainly not ruled out.

That said, adoption does have challenges, and only a fool would ignore that, so we had looked at it as a “second” choice, but preferable to IVF, when we started having miscarriages two years ago. We went to an informational session at a local agency (not linked for their privacy), and what we learned shocked us.

We had always thought that there was this vast number of children waiting in orphanages to be adopted, that there was a need for parents to step up, and that the real challenge was just getting qualified as an acceptable home.

HAH!

We could not have been more wrong.

So it turns out that in truth the number of infants who are adoptable in public adoptions (and by that I mean by non-relatives, via agencies), is a tiny fraction of the number of parents who are waiting in line to do the adopting. That agency we went to was one of the largest in the Mid-Atlantic region, and they placed 40 children in their busiest year recently, with a more typical year being closer to 25.

According to an adoption advocacy group (you have to dig for the number here – it’s table 1, column 7), 22,291 infants in the United States were placed for adoption in unrelated domestic adoptions. (Statistics on adoption are extremely opaque for some reason, and get aggregated in ways which obscure that truth).

By comparison, according to the CDC, the various types of Assistive Reproductive Technology (ART) which includes IVF, IUI, and procedures which happen in an office but does not include fertility injections or pills, 61,610 infants were born as the result of ART in 2011.

So adoption is actually, from a statistical point of view, not a better bet than IVF.

So why was it so bad for him/her to suggest this?

First, it was unsolicited advice, which honestly isn’t welcome on touchy, sensitive subjects. I don’t know how other people who are going through infertility feel, but as for me, I’m mourning the loss of some innocence – that something which I thought would be easy is going to not take climbing a mountain – it’ll take picking up the mountain and walking under it.

Second, the adoption agency said that you have to “market” yourself – you have to “sell” yourself to the birth mother, who will select your family from several families who are presented to her. So you’re competing with other families who all have similar if not the same dream of being parents, and remember what I said about “fair” before? Well, that applies here too – so how can I feel good about competing with other people in a way where if I win, someone else loses their dream? Geez, that’s horrible. That’s zero-sum thinking at it’s worst, and yet I can’t seem to escape it when thinking about how the agency presented how you have to behave. The agency (and everyone we’ve talked to about it) says you basically have to be willing to throw the extremely sharp elbow to be successful – you have to be completely focused and goal-oriented, and willing to be “that guy.” Even if you go the “hire a lawyer to do a “private” adoption, you’re basically outsourcing the problem of moral agency – I’m asking someone else to throw the sharp elbow on my behalf.

I’m not willing to rule it out – I won’t say I wouldn’t adopt, but after that info session, it dropped to the bottom of the pile below IVF.

Third – and this doesn’t, fortunately, apply to us – there are lots of couples where one partner is okay with adoption and one isn’t – the same is true for any other particular technology (egg donor, sperm donor, IUI, IVF, blah blah blah) – so saying “you can always do X” can be twisting a knife into someone who is already experiencing marital strife – and this is a painful, painful issue.

I can’t really explain the depth of feeling to anyone who hasn’t been through it – it’s experiential and awful, and can become consuming.

We’re happy to hear individuals’ experiences regarding their own journey, but suggestions like “have you tried relaxing” and the like are so profoundly not helpful, and in fact are hurtful.

So God willing, we’ll be able to say that we’d have children made with love and science.