Chiari Online Support Group

Screwdrivers and other painkillers

How are yall coping with the insane pressure and pain in your heads? I’ve got a 6mm herniation that my neurologist swears “is fine” and “just a birth defect” but I don’t believe him for a second. He’s got no idea what he’s dealing with based on the research I’ve done. I literally got my report and had to ask about the herniation because he wasn’t going to mention it. He’s more concerned with doing a CT scan for a sinus infection. (Not joking).

Im currently on tramadol and flexoral with an ice pack when needed (I found a nifty one on Amazon that wraps around your head and looks like a hat so I can wear it at work). As long as I can get the head pain under control I can caffinate my way through the rest of the day, but with the head pain comes all the symptoms (dizziness, fatigue, unbearable neck pain, facial numbness, inability to think or speak, etc). It just makes me want to cry because I can’t function and I’m a highly active, go get’em type of person.

So, how do you deal because I’m new to this. I’ve been dealing with migraines for about 9 years, but they’ve picked up in frequency from 5ish a month to 5ish a week. From “push, but its hard” to “not a chance in hell, girl. Go back to bed.” I can’t take it anymore and I need help.

It is not a fun spot to be when experiencing increasing pain and decreasing function. Rest, decreasing cognitive challenges, delegating duties, and reducing expectations are the biggest strategies to decrease symptoms. When the spinal cord and all its contents are being squished there is only so much relief possible.

To get appropriate help, #1 is to secure an appointment with a neurosurgeon. Only a neurosurgeon can figure out if a Chiari malformation warrants surgery. Chances are that the neurologist did not even look at the MRI images. Keep in mind that the saggittal planes AND the horizontal planes at the level of the foramen and below need to be assessed to determine the Chiari ramifications. Radiologists tend not to comment on the horizontal in reports, hence the neurologist does not know about it.

I do not know the best route for you to get to a neurosurgeon and you may need to see more than one. Ask the neurologist to refer you to a neurosurgeon - have your images reviewed with them AND outline your most significant neurological symptoms. Just having your MRI reviewed is not the best initial contact with a neurosurgeon. If the neurologist refuses to send a neurosurgeon request, be firm. If no go, request the radiologist go over the MRI images (both planes with you) see if they would suggest “further consultation” for the Chiari then. Ask about crowding in the foramen with the horizontal. Check it out online so that you know what you are looking at when you see your own images. See another neurologist, get your family physician on board with you to become your advocate.

You are not new to this Chiari business. You just have a name for it now. Chances are that you have had symptoms for a long time. They are just now getting beyond your capabilities of easy coping.

Good luck with your Chiari journey

PS Support is going to come from the people in your life who can help you out with the physical nature of running a household but also the emotional nature of becoming a person with different abilities. Put them in place and save your energy for the things that are important. Chiari does not let us “do it all!” anymore.

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Hey Casswhite,
Welcome to Ben’s Friends.
Firstly, I want to say ‘Listen to Gabby’, I can only give one :heart: , but everything she states is correct. The only thing I’d like to add to her post is keeping a diary to track your symptoms.
Some medicos (and from my experiences, especially neuros) are very good at minimising, and giving me one of my least favourite lines ‘Ohh it can’t be THAT bad’. Nah it’s not that bad… …It’s WORSE. They really have no idea of just how bad it can get. I have often explained it like this:

     "When you hurt your arm and it affects your arm.  
      When it's your head that hurts, it can affect everything" 

Others outside of this reality often have no clue just how bad it can all be. Having a history of headaches can be both a blessing and a hinderance.‘Ohh everybody gets headaches’. I had headaches for many, many years, every time it was minimised or made out I was exaggerating… …that was until it all went BANG. Then some people realised it wasn’t an exaggeration at all. But it took that event for people to believe.

If you have a ‘documented record’ of the frequency, severity, effects, diet, etc it can help the medicos to identify patterns and show that this is happening. Often our verbal notification are sometimes taken as hearsay, a documented diary can be proof.

You’ve identified it for yourself “I need help” and that’s the first step.
Your neurologist is like many. Sounds like a ‘I know everything’ sort of attitude.
You need a 2nd (and possibly a third) opinion, but I would suggest with a neurosurgeon.

Neurologist deal with the theories of the brain. Neurosurgeons deal with the physical brain. A tonsil is a physical issue, not just a theory. Chiari is an issue with the physical brain. You need to consult a neurosurgeon IMO.

Merl from the Moderator Support Team

Thanks Gabby and Merl for your support. I talked with my PCM the other day to get a refill on my meds (my neurologist won’t prescrib meds, he wants me to go through my doc) and explained what my neurologist was saying and what my research is coming up with. My pcm is used to me doing my own research on things so he wasn’t surprised by it. Lol I let him know that I felt a referral to a neurosurgeon was likely going to be needed, but that the neurologist was doing a Cine MRI before concluding his “findings”. My PCM wants to wait until that test comes back (this week) first before we talk about a referral to a neurosurgeon.

I think you both are right, though. Now that this has been recognized and its causing symptoms I should probably start keeping a log of when they are happening and how often. I wasn’t doing that with my migraines because they were “just” migraines. Now that things getting worse, I need to start documenting them better.

Ahhh, yes, the ‘it’s just migraines’ line. Don’t you just love that. Everything is migraine.
Migraines are notoriously difficult to pinpoint and treat, both in cause and definition. It’s often an easy way to give an answer. I do not believe I have seen a dr (of which there have been many) who hasn’t suggested migraine.

Often one of the characteristics of ‘migraines’ is what they call ‘Triggers’. For some people it can be a food trigger such as chocolate or bright light can be a trigger or loud noise. Keeping a diary can help show trigger patterns. Muscle tension in the shoulders and neck can cause migraines, so an activity log and a stress log can show these parameters.

The reason I suggest all of this is because I had to go through it all for months, documenting everything, to show that my issues weren’t stress related weren’t food related, weren’t noise related etc. The issues were related to something physically in my brain. If you can show that you’ve taken many of these steps already, it will reduce (what I call) their ‘avenues of excuses’. It also shows that you are being proactive in your own treatment.

Hope it helps
Merl from the Moderator Support Team.

Yes, I’ve been hearing the “migraines” line for so long and have yet to identify a trigger other than weather, lack of sleep, and my cycle. Those are the only ones I can ID and from what I’ve read, chiari pressure headaches are strongly affected by them. Food, wine, etc all the normal triggers for migraines aren’t triggers.

I took your suggestion and started keeping a log. I downloaded an app called Migraine Buddy and its got a load of info that can be added, plus you can export. I think it will be helpful.

“…all the normal triggers for migraines aren’t triggers…”
Some medicos like us to fit in a nice tidy box… …well, I don’t fit. My triggers do not follow a set pattern nor routine… … I have a whole list of what has been defined as ‘triggers’ but to avoid them all I’d have to hibernate everyday. And you can’t live like that. So I ‘try’ to manage the best way I can. I say ‘try’ because I’m not always successful, but between meds, relaxation and activity management etc I get by.
No 2 days are the same, so I’ve learnt I’ve gotta be flexible.

Some dr’s will take note of ‘diaries’, some will not. But you can bet, if you haven’t done one, it will be suggested.

Merl from the Moderator Support Team.

Lol I agree that they like everyone to fit into nice, neat, little boxes. Over the last 10 years, I’ve seen about 4 or 5 different neurologists and they’ve all gotten upset when I tell them that preventatives and abortives don’t work. I’ve tried them all and none of them do anything to help my headaches. It’s frustrating because its the reason I switch neurologists and they always go, “well, you haven’t tried it with me.” I hate the abortives so much (they make my face numb) that I’ve started telling them I’m allergic to them/can’t tolerate them so they will stop prescribing them.

I think, even if the neurosurgeon disregards the journal, it will at least be a suggestion we can skip over. Im tired of starting from square one every time. I want someone to give me a new suggestion or a new option. Not something that is recycled because they have no clue what to do with me. Im sure everyone on here can relate though…

I did a silly thing. I questioned a dr. They don’t like that. I also said ‘No’ to one of his (many) treatments. This was held against me. I was listed as a ‘Non compliant patient’.
I have found it is easier to comply with every request. Take every scan they suggest. Trial every medication, every treatment, every hint, suggestion, idea. Trial them all. Hell, one might work…
BUT,
When you see the new Dr ‘John’ and he suggests a medication, when he suggests a treatment you can lay it all out. The ‘when’ the ‘how’ and the ‘result’. Document it all. The idea “well, you haven’t tried it with me” is arrogance at it’s peak. As if taking the same medication under a differing dr is going to have a differing result. HOW???

I have my own files on a usb thumb drive, someone takes a scan I want a copy, someone writes a report, I want a copy. I have played their game for way too long, had to ‘reinvent the wheel’ over and over and ov… I’m not doing that again EVER. Some medicos are reluctant to take our word, but a medical report written by another medical Dr they are much more willing to accept. Write it all up, show it to your PCP, see if you can get your PCP to write a supporting letter.

But whatever you do, back yourself up, document EVERYTHING. They can have you ‘chasing your own tail’, going around and around doing the same things but expecting a differing outcome.

Merl from the Moderator Support Team.