"Suffering the Slings and Arrows of Outrageous Fortune"


Em’s PT appointment (the first one for her neck/headaches) was today and we actually went. Aren’t you proud of me? 🙂 (Go here if you haven’t read how I totally forgot to go to the previously scheduled appointment.)

Anyway, I held out for Chuck to see her – he has worked with Em on and off for 2 1/2 years and knows her and all of her issues. PT with EDS is always complicated and with the ever present possibility of cervical instability, I wouldn’t trust her to anyone [local] but Chuck. As usual, he set us right at ease, listened to what we had to say and filled us in on his plan.

Turns out, he was about as hopeful  as I was that he would be able to help her headache – which is to say, not very hopeful at all. Funnily enough, the trigger points in her neck which got her sent to PT in the first place were basically non-existent today – isn’t that just typical?

So, we were all pleasantly surprised that when he got her into a position with her head gently tilted back (while lying flat on the bed), her headache actually started fading away. She started with a 6 out of 10. After a couple minutes in that position, it was a 4; then a 3; then a 1. And finally, within 5 minutes, it was gone. Needless to say, we were all pretty shocked that it helped.

I mean, we all know her neck is as unstable as the rest of her, so clearly there are mechanical issues that cause pain. And there are times that her trigger points are visible by just looking at her neck. But, this position is a pretty simple solution – it basically just allows the muscles to go slack and rest. It is now about 3 hours after her appointment and her headache is still a 4. Anything that gives her relief is a good thing as far as I am concerned. He wants her to use heat on her neck and suggested we get a soft collar – which I have been intending to get but just haven’t. He didn’t want to change too much to begin with, particularly since what he initially did was successful – so he just gave us the one exercise to do and we will discuss more next time…

Which brings me to the ‘assorted stuff’…

A little background information first: If you have read Part 2 of the Driscoll Theory or if you are a member of the EDNF message boards, you might know what I mean when I say lying on one’s (if you have EDS) back can lead to a weird type of paralysis/shock situation. Em complained of this long before I had ever heard of Dr. D and we just chalked it up to plain old sleep paralysis. Then, Dr. D started a discussion on the EDNF message boards about becoming paralyzed when lying flat on your back. It was striking – exactly what Em had described a long time ago but had internalized as ‘normal’. When I asked her, she admitted it happened everytime she laid on her back. Definitely not normal.

In a very brief and non-medical nutshell, Dr. Diana’s theory is that the vagas nerve is being compressed by the higher pressure (from CCSVI) of the internal jugular vein, thus putting the body in to a state of shock – BP drops, unable to move or speak, heart rate accelerates, etc. The vagal nerve controls pretty much everything, except for the adrenal glands. So, if you can sit up and get the adrenaline flowing, you can bring yourself out of it. And avoiding lying on your back in the first place is obviously a very good idea.

Which brings me back to Em’s PT appointment today… Did I mention that this simple position that alleviated her headache entailed her lying flat on her back for almost 10 minutes? Plus she was lying down for several minutes previously as he did his initial examination – so she was supine for more than 15 minutes. She starts into this paralysis almost immediately whenever she lies on her back – but it isn’t obvious and I was so amazed that her headache was improving, that I totally forgot this. By the time it was happening, she was barely able to communicate and didn’t say anything about it- until we got into the car to leave – because she still has it in her head that it is NORMAL! I noticed she wasn’t talking much during the exam, but she was responding to Chuck’s questions and I just thought she was getting relaxed since her headache was better. I also noticed that she had difficulty rolling over and getting up, but I just thought she was being careful. Once she was sitting up, she was fine.

I have been on watch for this after reading Part 2, ready to wake her up – to do whatever it takes to get her out of it – but when it happened right in front of me, I missed it. And the only exercise Chuck gave her was getting into this position 3 times a day: he has no idea that she was barely functional when she was doing it. This is so the story of our life!

So, making lemonade out of lemons, on the way home, we discussed it and came up with a plan. First of all, my husband is going to see if he can modify the exercise so she can do it sitting up and we will fill Chuck in when we see him next time. Secondly, she is willing to take a few minutes of being ‘paralyzed’ to get some serious headache relief, so she will only do the supine position if I am right there beside her. I will keep her talking and if she gets fuzzy or stops making sense or stops talking altogether, I will be ready to sit her up and smack her around (figuratively speaking, of course).

But, as frustrated as I am about missing it, I also see this as an opportunity of sorts. I will monitor her BP, before, during and after. We have a pulse ox, so I can keep an eye on her HR and oxygen levels. If I go in and say to Chuck, to the doctors – ” When she lies flat on her back, her BP is very low (giving specific examples) and she feels paralyzed, etc.”, I think it will have more impact than if I say “I think her vagus nerve is being compressed and paralyzing her”. (I usually try to avoid saying things that make doctors roll their eyes at me and the second statement would get me eye rolls for sure!)

Also, assuming her BP goes as low as I think it will, Chuck will be able to document it next time she goes. The silver lining to all of this is that it is a wonderful opportunity to officially document what is happening. If indeed this is what is happening to Em, there are ways to make it better – from simply avoiding lying supine or even surgery.

So, while this is yet another thing to worry about and I once again feel stupid for missing what should have been obvious to me, I am actually pretty happy right now – it is one of those situations where I feel like we might actually be on the brink of making some progress. And Em’s headache is still better, so that is a not-so-small victory. And, honestly, when even the smallest victory is worth celebrating, the not-so-small ones are even sweeter.





Comments on: "PT and other assorted stuff" (3)

  1. Great PT visit! I think you have a very good game plan. Doctors listen to data. So we have to collect data. That is one of my goals…. to help my daughter describe things in more specific terms rather than general and to understand that doctors want data.

    Happy for you, that you had such a good visit and that all important eureka moment!

    • Hey Anne,
      We are so fortunate to have Chuck – we have plenty of troubles but at least we have a great PT! I agree that data is important – I think we can more easily communicate with our doctors if we talk numbers and data. I plan on very vigilantly documenting Em’s supine paralysis.

      Have a great day!

  2. […] PT and other assorted stuff « Our Life with Ehlers Danlos Syndrome. […]

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