"Suffering the Slings and Arrows of Outrageous Fortune"

Things have improved, slightly, since our awful visit to the ER. Not her pain, that is still uncontrolled and terrible, but we are a few steps closer to getting answers or at least some real treatment.

MRI Results

Em’s MRI was last Wednesday and it actually showed a problem. Turns out, she has “Tendinopathy of the Supraspinatus Tendon” which means that tendon is either irritated or torn. Putting it in simpler terms, she has a rotator cuff injury. Personally, I think it is a tear, since her description is that she had it resting behind her head in bed and all of the sudden something popped, it went numb, fell down and she couldn’t lift it. Unfortunately, it keeps getting re-injured in her sleep and the slightest movement away from her body causes awful pain and makes it go numb again. We are figuring out what to do about it. The doctor who ordered the MRI probably will not be the doctor who manages the problem, so we are going to have to get her to the ortho ourselves.

And, we have resisted the urge to pop into the ER and see if our “favorite” NP is there and do a we-told-you-so dance at her. Bottom line here, is that Em needed an MRI. We were right, the NP was wrong. X-rays would not have shown a thing and would have only hurt her more and possibly made it worse. (Em is emphatic that she knows that the would have made her move her shoulder in ways that would have hurt and maybe damaged it more. At this point, I am inclined to believe her) And, if she had just gone ahead and ordered an MRI while we were there, we would be a week ahead of figuring out how to treat it.

So, we are feeling pretty validated after finding out the results. That validation comes at a pretty high cost though. However, it does confirm that, generally, we know what we are talking about and that will make facing down rude doctors (or NPs) a little easier. Confidence is  good thing.


The Rheumatologist ordered some bloodwork – mostly to check for Vit B deficiencies – when we were there in November. We had to do it at our local hospital and not Children’s for insurance reasons, and I think the Rheumatologist still doesn’t have the results. I am not quite sure if it is their fault or the hospital’s fault but it is ridiculous. I am not happy with any of them, to be honest. My husband finally just called and got the results. All but one is fine – it looks like her B6 is low – which could contribute to neuropathy. But, again, the doctor who ordered these doesn’t seem to want to manage this, so we are pretty much on our own with dealing with this.


We really liked him – he was a great guy and all – but he seems to be washing his hands of Em. He prescribed a med called Trileptol, in the hopes it would help her pain. As she was titrating up to a full dose, just a couple days into the process, it was helping her pain but it messed with her head in a pretty significant way. She has always been “feisty” but this med made her uncharacteristically angry and unreasonable. And I won’t say she was suicidal, but let’s just say she was talking in a way I had never heard from her before. It was pretty scary. And dealing with it was  complicated because this was all taking place the day before Thanksgiving, the day Em asked to go to the ER. She stopped taking it and the nurse I talked to tried without success to talk to the doc about it. She finally called back, having not been able to talk to him, and said don’t take it anymore and that she would make sure the on call team knew about the issue if we needed more help.

The office eventually called back Monday – after the holiday and the weekend – with his thoughts. He said that med shouldn’t cause mood changes (if that is true, why did the info from the pharamacy say it does and to inform your doc?) and that she should go back on it and titrate up more slowly. Riiiggghhhttt.

So, yeah, Em will not be taking that med anymore. Haven’t heard back from him and the nurse – I don’t know if she was just reading from our appointment summary or if he gave her new notes – informed me during that call that we should just go to the Pain Management doc to get more pain relief and to “find someone to refer us to someone who can investigate a diagnosis of Small Fiber Neuropathy”. That makes me insane: “Oh, I think you don’t have that unusual disease that you think you have, I think it is this one, which is far more rare and nearly impossible to diagnose. And I have no plans whatsoever to help you get that diagnosis.” Hence my belief that he is washing his hands of us. Lovely.

By this point, I was starting to get fairly annoyed. Or possibly livid. Possibly ready to go to war and/ or all Mama Bear on the next medical person we encountered.  The doctor we waited two months to see had nothing to offer and dumped us. That was the final straw. Every single doctor we had seen about the CRPS had played hot potato with this kid. She was tossed to the next guy with a polite smile and a hope that he would do something. And, if that didn’t happen, what did it matter once we were out of their office?

We had a pain management appointment on the 4th and I decided it was going to be our line in the sand. If I had to throw a gigantic fit, he was going to do something constructive to help my child. That appointment deserves its own post, so that will be up tomorrow. It was good and we so needed good right now.

Another Ear Infection

After a very long PM visit on Friday, Em said we needed to get her ear looked at and, since we were right there, we popped into Urgent Care. I don’t think I mentioned here that, while we were at the Rheumatology visit on November 19th, they looked at her ear and said she had a perforated ear drum. At least the doctor doing the exam was pretty sure it was – she looked at it a long time and said she was pretty sure it was perforated and to make sure to keep the ENT visit that is scheduled for the 15th.  So that ear is just an ongoing issue.

Weirdly, which is her norm, during the MRI on Wednesday, the noise made her ear suddenly pop and hurt. Since then, she wasn’t able to hear out of that ear. She knew she wasn’t going to make it another week and a half until the appointment, so we popped into Urgent Care.

Good thing we did. The poor doctor looked in her ear. And looked. And looked some more. Then said – and you just LOVE to hear this as a parent – “I’ve never quite seen anything like this before.” She couldn’t even see the ear drum because there was “white powdery stuff” blocking the view. She grabbed the other doctor to come in and look. Fortunately, this was the same doctor we saw last time and, not surprisingly, she remembered us.

Long story short, it is either a fungal infection (Em asked, “if I google spores, will I be freaked out?” They told her not to google it.) or fluid that has crystallized from the ear canal after the ear drum perforated. It was very fortunate that we knew her ear drum was perforated as of the 19th, because that means ear drops are a no no. Initially, they apologized that they had nothing to offer and said they would tell the ENT to see her asap. They came back and said they had ear drops as a suspension fluid that she could use, so, we have been doing ear drops 4 times a day again. And, I am currently waiting on a call from the ENT. I doubt they will see her today yet, but hopefully they can soon.

We are hanging in there. A lot is happening. We still have few answers but are slowly getting there. I will post about the pain management visit tomorrow.


Comments on: "The Latest in Our Ongoing Adventures" (6)

  1. Diane said:

    I am so sorry.. I hate the Dr cycle, the bad Drs, the cold Drs, the Drs. who know a patient is suffering and opt to turn their back and hope ya go away.. If they would simply say ” You know, I have no idea how to help you and wish I could but you are going to have to try to find someone else, or I know someone who might be able to help” How hard would that be? You describe this journey so well.. the heartache should stop at the door of medical care, but too often they shovel on more when they should be the ones to help. Big hugs to both of you and I hope Em gets some pain relief.

    • I know we are not alone – I wish our experiences were unique but so many people experience them. At least we have a few good docs to balance out the bad ones. You are right though, how hard is it to just admit you don’t know everything? Apparently, very hard – judging by the doctors who can’t seem to admit it! And, yet, we have no choice but to continue to push on and ask for help.

      (How are you and Abby doing? Hope you are both well!)

  2. Wow, Vitamin B-6 is the one that is listed on the histamine / mast cell sites that they recommend people supplement with. Many EDSer’s are finding they have histamine or mast cell issues.

    • I am not an expert by any means, but it seems that if B6 is either high or low, it can cause problems. It also seems that being deficient in B6 is rather unusual – you almost need to go out of your way to be deficient. So, it may be more significant than just needing to supplement to raise it – but, like I said, the doc who ordered the bloodwork may not have any desire to help us figure that out. I rather doubt it is the cause of Emily’s neuropathic pain, but it might affect it. Just one more thing…

  3. Just a thought — since Em tends to have high intracranial pressure, I wonder if a small leak through her ears (CSF otorrhea — not uncommon in us) could be the cause of that yuck in her ears? Either dried CSF or fungus secondary to chronic moisture? Hmm…

    • Ooh, very good point. I had not thought of that. Will definitely bring that up. We have to wait until the scheduled appointment on the 15th – no available appointments earlier. >insert eye roll<

      Thanks for pointing this out as a possibility!

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