Crossing Chiari and syringomyelia off the list

I am pursuing Chiari malformation and syringomyelia as potential differential diagnosis and believe it could be helpful if I chronicle the experience here for others who might be curious.

While I have always felt ME was and is the appropriate diagnosis in my case, having been diagnosed after the CCC and generally feeling like my experience is very similar to that of most other pwME, I do have a couple of symptoms that makes me think I should still make sure I cross Chiari and SM of the list (like they should have been before the ME diagnosis was made).

Beyond the significant overlap in symptoms between ME and Chiari malformation, the symptoms that make me want to check this out are
- Explosive headaches in the back of the head triggered by coughing, straining etc
- Significant pain and burning in the cape area (neck, shoulders, thoraic spine)
- Numbing and tingling in face, arms/hands and legs

MS has been ruled out multiple times already.


I am very lucky to not only have access to free healthcare but more importantly a medical care insurance that have already provided me with a free GP video consultation resulting in a referral to a neurologist, which should lead to an insurance covered consultation within a week.

My biggest concern at this point is whether neurologists in general have much experience and/or knowledge about Chiari. I think it is probably unlikely that I actually have a malformation, but I would like to feel confident that I had been evaluated by someone who has a clue. I know there are neurosurgeons around the country that see Chiari patients every week, but not sure about run of the mill neurologists.

 

Maybe you did have cranial mri with contrastagent in order to rule out ms; couldn‘t the radiologist‘s report tell something about chiari?

 

@diwa I did, but none of the reports say anything about it. From what I understand a cranial MRI would not be enough on it's own in any case, but I could be wrong. One of the things I will ask the neurologist about

It would be great if that is enough to put all of this to rest, I don't really have the capacity to go anywhere if I don't have to!

 

Is this a new symptom for you.? You give a good description of something going on in my neck and head recently. I had over past few years noticed difficulty and discomfort when turning my head from side to side. Two months ago I started getting shooting pains up the back and sides of my head, very painful. Then this went on to top and forehead. Now it has changed to constant but not as severe pain It is now almost constant real discomfort. It feels as if my head has been badly shaken most of the severe pain has gone from my neck except when turning from side to side, normal kind of head exercises have made no difference. Your description of the coughing explosion is perfect. I hope you get some answers and I'm glad you posted. I'll be following with interest though I realise yours may be completely different to mine

 

I would not seek out a 'Chiari specialist'. Chiari is an area that has been taken up by opportunist medical professionals for a long time. I would look for a general neurologist in a university hospital - which you will have in Oslo.

 

That's the plan! I don't think we have any 'specialists' in the country, so no worries there It seems most people who have actually been operated on have been through the university hospitals in Oslo or Trondheim. I'll see a private neurologist first to avoid spending 6 months waiting for a consultation I possibly don't need.

 

If the situation is anything like UK the thing to do is to find out who is the most respected general neurologist at the university hospital and ask to speak to their private secretary for an appointment.

 

Thanks @Jonathan Edwards for the tip. I would assume the situation is pretty similar. I'll ask around.

 

In the US, there are Chiari experts at every major university hospital. If it were me, I would seek care from someone like this rather than the neurologist down the road. I have seen what happens when doctors completely miss things. I have also seen what happens when people try to get surgery from the wrong people, in particular surgeons who rarely perform this surgery. And there are some states where I would avoid having surgery altogether. But ours is a very big and unequal country. I am sure it works much differently in Europe.

 

That headache sounds like something you should talk to a doctor about, if you can manage Though I often have tension headaches and have a history of migraines, I'm lucky enough that I don't have a chronic headache. The acute pain when coughing or straining though is so bad I was sure I was dying a few times, but then it passes and other troubles seem more important until the next one.

I'm mostly looking into getting better imaging done as a precaution, odds are it's just years of screwed up muscles and joints ganging up on me. Since I do have a way to do this pretty much cost free and without having to travel much, I have the luxury of looking into it just on the off chance there might be something to it and that there might be something to do about at least some of my more debilitating symptoms. I hope sharing the process here will be helpful to others considering if it's worth the effort.

 

I'm seeing the neurologist on Wednesday. For once I'm not planning to rest up before I go, in the hopes of presenting a more accurate picture of my health. Typically when I see a neurologist they will tell me my reflexes are just a little slow, but that is always on a good day. This time I have another appointment the day before so we'll see how that goes.

My plan is to focus on these core symptoms:
- The explosive skull crushing headaches that are made worse or triggered by coughing, laughing, looking up too far, or straining
- Numbing/tingling in hands, feet and more even when lying still with decent blood flow
- Breathlessness (regardless of activity level)
- Bad burning/aching pain between my shoulder blades that transfers to right shoulder and arm making them useless
- Sleep issues
- Nausea not associated with meals

I think ME is noted in the referral but my plan is to not go into that or fatigue unless asked. Fatigue is a common Chiari symptom but I'd like to avoid the ME wastebasket trap. PEM is another one I'll avoid even though it's my worst problem as in this case it would only confuse matters.

ETA: I’ll see what the neurologist is most concerned with, but I could also include arm weakness beyond deconditioning, blurry vision, as well as episodes where I have had a sudden loss of control in my legs. And speech problems, memory issues, loss of coordination, dizziness.

 

Just got back from my appointment. The neurologist was respectful and took me seriously. He was mostly interested in the headaches and any signs of hypermobility (I do have some but not much). I wish I could have talked more about breathing issues as that is really bothering me, but I was too foggy to remember everything and the conversation didn't really go in that direction. He didn't really let me get half a word in edgewise so that was a little annoying.

He agreed to first look at some old cranial MRIs that he had access to and then call me to discuss options (ETA: So I don't have to waste energy going for a new MRI if I don't need one). Chiari should be visible if there and syringomyelia is unlikely to be an issue if there's no Chiari malformation. I did really want to have my thoraic spine checked out as well, but I'll wait and see how this turns out first. He did say there are headache syndromes that present with similar headaches to Chiari, though rare, and that he would look into that for me if no signs of Chiari shows up.

The breathlessness and pain between my shoulder blades bother me a lot more than those occasional headaches, but no one seems to take those symptoms seriously. I wish I could trust doctors enough to assume they are right about that.

 

My daughter has increased facial pain, and headaches. Much of this seems to stem from tight muscles ( very tight) and chiropractor gives relief via trigger point massage. You can do this to yourself potentially for some areas. Sadly muscles are simply getting tighter and relief is becoming increasingly short lived.

https://triggerpointselfhelp.com/sternocleidomastoid-trigger-points-and-referred-pain-patterns/

Recent issue with cocodamol for acute myofascial pain has increased pain, nausea, muscle tightness and decreased sleep. I am seriously considering getting some sort of test for P450 pathway SNPs as she has reacted badly to virtually every medication she has had. The cocodamol was dispensed by doctors on call who also did not take breathlessness very seriously - it was the reason we engaged as tight facial muscles were making breathing and swallowing awkward and painful.

I'm watching this thread with interest as she shares many of the same symptoms - getting referrals here however is a different matter.

 

The more I learn of others' health care experiences, the more I'm convinced that physicians in training (and existing physicians) be required to (somehow) experience severe ME for a week. The value of that lived experience to patient care and treatment would be priceless.

Sigh, if only I was a dictator.

 

Of course, if we knew how to give someone severe ME for a week and then make it go away we may all be a lot better off

 

I don't think a week would be long enough to realise that the GET/CBT type of approach doesn't work.

 

Ideally they should spend a week with someone with ME who is housebound, preferably someone who has no family carer and has to rely on paid care and manage their own finances. Obviously the person would have to be able to dictate how much time they could cope with having someone else in their home.

 

It would – but proper engagement and listening could take them a very long way.

Case in point: one of our GPs (now retired) tended to brush off ME symptoms a bit, but was deeply sympathetic and engaged about my psoriatic arthritis. Clearly, that was a much more impressive diagnosis.

The other GP, who does listen, knows that PsA only gives me 20% of the trouble that ME does. She thinks about the challenges of living with something, not the respectability or otherwise of the diagnostic label.

The clinical outcomes were identical with both GPs – they can treat the PsA to some extent, but not the ME. The difference was that I felt supported by one, and much less so by the other.