Update: BJHS or…

Recently, I’ve been pretty quiet on this blog. That’s mostly because, to be honest, I’ve been very busy with my own life and also relatively pain-free. Little things have reminded me that I have something going on (a hour riding on a horse, for instance, which was about the physical equivalent to being stretched on the rack), but I’ve been managing.

Until recently. The stress of my everyday life has increased a great deal, but the activity level I enjoyed over the summer has decreased. The weather has turned. And just generally, everything hurts more.

My fingers tingle all the time. The pain sometimes radiates up through my wrists. The other morning, I woke up to this:

The pain on the left wrist, with the bracelet and those magnificent veins, was severe and there was a bit of swelling. The other side? Just fine, thanks very much. What did I do to cause this? I have no idea. It went away in a day. I get finger pains that come from nowhere and then disappear.

My feet are agonizing. Socks hurt. My toes feel like someone is shoving knives into the joints.

My back hurts. My neck hurts. Sometimes the pain in my hands radiates up to my elbows and shoulders. Sometimes my hips ache. My sciatica is outstanding!

Overall, I’m in what I call a “pain jag.” Things just hurt. I have headaches and body aches and I’m crabby as hell.

Add into all of this the idea that maybe it’s all not caused by BJHS at all. Maybe the hypermobility is just making something else, something more sinister, worse.

Enter Chiari, or hypoplastic posterior fossa.

My specialist has an interest in this strange disorder and in a doctor in North Carolina who treats it. Operations to correct Chiari in adults (don’t worry, I’m getting to the explanation) have helped patients with Chronic Fatigue and with Fibromyalgia, which he treats. He suspected I might be suffering from this disorder, and asked if he could send my MRIs over to North Carolina so the specialist there could take a look. I consented, and off they went. The results were inconclusive (more tests were indicated), but the specialist thought there was a pretty good chance I had the problem.

Great.

So what is Chiari? Basically, it means that the skull is too small at the base and presses on the spinal cord. This compression, depending on what gets compressed, can cause pretty much all the symptoms (pain-wise) that I experience. It wouldn’t explain everything, but it would explain the pain. And there is a surgical “cure” for Chiari, involving, from what I understand, a bit of shaving off of the skull to allow the brain stem and spinal column more room. This relieves the pressure and the symptoms.

In his exam of my MRIs, the specialist in North Carolina found evidence of compression of one of my veins, right at the base of my skull. Two-thirds compression, in fact, which isn’t encouraging. My neck is also clearly hypermobile, which is probably not helping anything. But to know for sure, I would have to head out to North Carolina.

As I do not have the funds to do this right now, I can’t see that happening anytime soon. Which is frustrating in and of itself, because even if I declined what is pretty scary surgery, it would be nice to know what’s up with my brain, you know?

For now, I live in relative ignorance, and more pain.

 

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10 Comments

  1. creams0da

     /  December 28, 2012

    By tingling, what do you mean? Is it like your fingers fell asleep, or do they feel at all “electric” or like a cold pins and needles tingling? JW, because I’ve experienced that intermittently, along with a lot of pain (although I’m attributing my pain to my joint problems at the moment) all over for years. I’m in pain so much of my waking life I don’t even notice it anymore unless I actually suffer an overt injury, like my knee popping out or elbow getting out of joint.

    Reply
    • Hi, CreamsOda! By tingling, I mean the same feeling as when your fingers fall asleep and then aren’t quite awake again. I also get the cold pins and needles tingling, and just plain old pain. I know what you mean about being in pain so much you almost don’t notice it anymore!

      Reply
  2. Nicole

     /  January 7, 2013

    Hi! I stumbled across your blog while I was looking for a link between JHS and insomnia. Would you be willing to talk about this over email? Also, you mentioned you are in the NW. I’m in Portland and was curious which doctor you found in the area (are you in Seattle or Pdx?) Thanks so much, I’m just figuring out the JHS intricacies and never thought about a connection to sleep. Hope you are well, Nicole

    Reply
    • Hi Nicole, I’d be happy to talk about this over email. I’ll send you a note. My doc is in Seattle, but he no longer accepts new folks. I’d call the teaching staff in the rheumatology dept. at the nearest big university and see who they can hook you up with. That’s how I got in with my doc.

      Reply
      • Nicole Hess

         /  January 9, 2013

        Thanks for your reply – I look forward to talking to you more – not sure what your name is though :).

  3. PCS

     /  November 8, 2013

    Hi there. This is a seriously great blog. My husband sounds exactly like you. I’m really interested in hearing about how you know the ambien took you to REM. We live in Portland and are looking for a specialist. I’d love to chat via email if you can. Thanks for putting your knowledge and experience out here.

    Reply
  4. Bobbi

     /  November 22, 2013

    Thank you for sharing your experiences and making me laugh … I think I have JHS and I can use some humor. I actually live in NC … would you mind sharing the doctor’s name? Chiari sounds scary . . . but I’m in a lot of pain and my life has become so limited, I’m searching for answers. Up until a few months ago, I danced a lot, jogged, biked. Now walking is hard. I just found your site and this post is old, I hope you are still biking and enjoying as much as you can. Blessings!

    Reply
  5. SUCH a good blog, thank you! Look around for info, consistently brings you back to WordPress. Diag. EDS after fighting for the son to be diagnosed with ANYTHING. He was -after what I see is the usual long and bafflingly stupid story with medical scoffers. Lots and tons of familiar stuff here, am really, really interested in the whole wrist pain thing, those are MY wrists/back of knees, unspeakable, isn’t it? Chiari connection, gee whiz, just when I thought someone pegged it as the tendonitis/neuropathy connection, been looking for quite awhile. Appreciate the direction, so much more than we’ve been able to get from a doctor to this point. I’ll be asking about exactly this tomorrow.

    Take care, hope the riding gives you Peace despite all the crazy ouch.

    Reply
    • Thanks Izzabel. I’m glad you received a diagnosis! I need to update. So much has happened to me.

      My wrists are still nuts. Last week I had the pain and crazy swelling in the left one. I’m thinking now it’s either thoracic outlet syndrome (TOS) or something to do with chiari, or both. Seeing a new doc soon, I hope, who can shed some light on it.

      Reply

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