thanks all for the welcome. tough writing this because my head seems full of glue and my arms are weak. also, my caps key just went out on my laptop. i'm trying to figure out if it's mainly fibro or chiari. I don't get headaches, just a lot of pressure in back of head and neck with stiffness. also have tmj, nausea, dizziness, sleep apnea, and just emg diagnosed polyneuropathy in feet. so, sent my mri to dr. heffez, and he called to say I have a 2mm chiari 1 and some cervical stenosis. I have an appt. with him 12/3-4. this is all new to me, so I was wondering how many here have typical fibro. pain, weakness, stiffness in limbs, extreme fatigue, head pressure and fog, neck pain, and ibs along with the chiari headache I just don't seem to have. basically, do many of you have all this with rear head pressure, but no real head pain. I do get more head and neck pressure with vertigo when I extend my neck, and flexion is fine.
I am also about to see Dr. Heffez and am new to all of this so, I don't know how much I can answer your questions. But, I can say that I have all the symptoms you listed there as well. I do get headaches and I also have all kinds of digestive problems and chronic nausea. Neck flexion and extension both increase symptoms substantially. Thanks for the discussion thread. It is helping me to learn more and more about other people's situations. Good luck with Dr. Heffez. I'd love to know about your experience when you get back.
I get more neck and head pain in the back of my neck and I sometimes it feels like I have a big ball in my head lot of pressure type feeling my neurologist said it is a muscle and since my surgery he said that muscle will not release and it causes the pressure and neck pain.
Pay attention to the increase of symptoms with flexion or extension - this COULD mean cervical or cranio-cervical instability. If Heffez asks you to wear a collar after he sees you take it seriously, and make sure the collar you get is tall enough for your neck- that’s important. Mandy is so right about the EDS, the increase in symptoms with flex/ext can tie directly into the EDS.
Not every Chiarian has a headache with the pressure, I think it’s just your normal variant in symptoms.
I do! I have fibro and Chiari I with a 6mm herniation. I do not get typical bad headaches either: just extreme pressure in the neck and ears and occaisonally I get migraines (maybe once a month from hormones I think). I have all the same symptoms you do to the letter. Even the head and neck pressure with vertigo with neck extension.
I have trouble "tracking" with my eyes. Especially if the eye test (look right, look left, look up look, down) is given to me at the eye Dr. Basically my eyes feel like they are doing little loops.
So, you aren't the only one that doesn't get horrible headaches. But, pressure in the head is a type of headache. I went to a very respected surgeon and he said I was a surgery candidate. But, my PCP (whom I don't tell everything to cuz I thought it was all fibro and didn't want to constantly complain about something for which she can't do anything) wants me to see a neurologist to help me sort out what is fibro and what is chiari : if that is even possbile! Lol I have recently developed a lump in my throat which they thought was from GERD burning my vocal chords. But, that has resovled with meds and the lump or rather squeezing sensation has not resolved. I think it may be Chiari related and will find out hopefully. Sorry if I am rambling...I am close to your age too and have had these symptoms for years not knowing it could be fixed! At least in some cases. If it is indeed not the fibro. ....sigh...we shall figure it out. :-)
I do have a collar that fits tight, so Jenn, I'll try to dig it out and wear it now until I see him in a few weeks. I have to read through all that great info. Mandy posted. Thanks Goingcrazy, AsaN, and Ophelia for your responses confirming the symptoms, and it was helpful to hear some people feel more pressure than pain.
An update:
I went to my Neuro today, and got the results of my brain MRI and my sleep study. I think EDS is also part of my picture because the MRI also showed anterior disk herniation of TMJ bilaterally, so I guess that's indicative of connective issue problems. Also, study found I have severe obstructive apnea probably due to laxity of the tissue or the Chiari is causing this along with my swallowing difficulty.
Thanks for the info. It's funny, I did see a lecture by Dr. Holman a few years ago at a Fibro. conference where he talked about his work with Mirapex and brain overstimulation as well as cervical stenosis. I tried the drug but couldn't tolerate a large enough dose to help. I never had MRIs in flex. ext., maybe Heffez will order them. My brain Mri was vertical, but I don't know if Heffez does vertical at his facility. Most say it's not detailed enough as supine.
My sleep study just showed severe obstructive apnea, so respiratory, not central. The question is with me if cervical or chiari squeezing, wouldn't that be mainly central apnea? Or, it could be Chiari causing swallowing problems and slow larynx, and the EDS possibly adds to tissue laxity there to cause obstructive apnea. My head is more screwed today since I don't feel I slept one minute last night, and I'm upset the study showed I have 45 respiratory events per minute.. Didn't think that was possible, and I've never had this when I was younger.
Also, re EDS, I may have it because I just learned I have TMJ dislocation. Is EDS testing mainly by exam, or genetics test or other blood tests? OK, need to take a quick break.
Thanks,
Geoff
Mandy said:
Hey Geoff,
You're not alone, I too struggle sometimes to type what I want, and I have to read it over multiple times because sometimes the words just white out. I have every symptom you listed as well, except for the polyneuropathy. I have a couple of links to add, have you already had the flexion/extension MRI done then?
This is an article by my rheumatologist, Dr. Andrew Holman, he's the one who believed me when I said I had Chiari, and set me up with additional testing and a direction to go in:
He's a genius in my opinion. He believes fibromyalgia and cervical stenosis go hand in hand with many of his fibromyalgia patients, and that intermittent cord compression causes the fibromyalgia symptoms (brain stem never shuts down, therefore you never get deep sleep).
He has also said the constant compression from Chiari can cause the same problems, in his opinion.
Have you been tested for Ehlers Danlos Syndrome? It can cause a variety of problems in addition to the Chiari. Here's an article :
In my opinion, most if not all Chiari patients have some form of Ehlers Danlos or hypermobility. There is a substantial portion of failed surgeries (40% within a 2 year period), and a portion of those have been associated with connective tissue disorders and cervical instability.
I'm glad you're seeing Dr. Heffez, he's considered a Chiari specialist.
Yes, we are similar in many ways. I have the throat lump which appears to contribute to my swallowing problems and obstructive sleep apnea. I guess anyone who doesn't sleep well gets fibro eventually. My TMJ is pretty bad, and hopefully you don't have that. I have the GERD and IBS as well. Gee, don't I sound wonderful? What a trip this all is, huh?.
Ophelia1568 said:
I do! I have fibro and Chiari I with a 6mm herniation. I do not get typical bad headaches either: just extreme pressure in the neck and ears and occaisonally I get migraines (maybe once a month from hormones I think). I have all the same symptoms you do to the letter. Even the head and neck pressure with vertigo with neck extension.
Lol I have recently developed a lump in my throat which they thought was from GERD burning my vocal chords. But, that has resovled with meds and the lump or rather squeezing sensation has not resolved. I think it may be Chiari related and will find out hopefully. Sorry if I am rambling...I am close to your age too and have had these symptoms for years not knowing it could be fixed! At least in some cases. If it is indeed not the fibro. ....sigh...we shall figure it out. :-)