For the most part my headaches are real manageable but when I get a "flare up" i have a bad headache and nausea that can last weeks to months. Does anyone else have flare ups that last that long? Thanks
Yes, I had flares that lasted for months at a time and then would not resurface for months at a time....Chiari and it's symptoms can be very cyclic.
And since ur Dr does not feel surgery is an option for u, u will need to rule out all related conditions to see which is causing ur symptoms,.
Syringomyelia- a cyst like cavity that forms with CSF, most Drs look in the cervical spine for this, however many have had them form in the thoracic and lumbar spine, so u do need a MRI of those areas as well.
Tethered cord,....this is where ur spinal cord attaches to the spinal column this should hang freely so u can stretch with out limitation...this also pulls down on the brain stem...a lumbar spine MRI as well as the brain MRI can give indications for this, as many times it will not show on a MRI...so other issues like bowel and bladder issues, leg and lower back pain, a scaral dimple, as well as a hairy patch on the lower back...the spinal column ending longer then normal.....
Mild scoliosis can also result from have TCS.
ICP- intracranical hypertension- this is an increase of CSF fluid which creates pressure and pain and can affect vision....a LP is used to check for this,...,we must be careful they draw slowly as too fast a draw can pull the tonsils lower and obstruct CSF. With ICP- there is not always a reason for the increase of CSF production...it could be ur body makes more then u can absorb or ur body is just no longer absorbing it.Shunts are used to drain the excess fluids to other areas of the body.
POTS-Postural orthostatic tachycardia syndrome ( also postural tachycardia syndrome) is a condition of dysautonomia, to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. The blood puddles in the lower extremities and when u stand up can cause u to pass out....the feet can get a bright red or purple as a result of the puddling....
Sleep apnea- there r 3 types, central, obstructive and mixed also known as complex. Many with Chiari have this so if u wake gasping for air or have many sleep disturbances and snore, it is best to have this ruled out.Children are more likely to have a more severe reaction and should be checked .
Ehlers-Danlos Syndrome- This is a connective tissue disorder and many with Chiari do have it as well...the problem is, many Drs do not look for EDS prior to doing surgery and those with EDS are prone to have issues with meds and foreign matter so items like a dura patch, stitches , even shunts can cause a reaction .,.rejection of the item leading to infection and increased CSF production....if ruled out prior the Dr can take precautions to avoid those reactions...use of the patients pericardium (own skin) is harvested for the dura patch, there is less risk of leaks as the rejection is less likely.
EDS also plays into disk issues as EDS is a connective tissue disorder this allows for joints to shift, including our spinal cord and the disks....we can also have cervio cranial instability....this causes HA's and the sensation of having a bobble head....
EDS is also the cause of one to be slower to heal....so it is very important to know and be able to plan accordingly.
With having Chiari we tend to be prone to both connective tissue disorders, but also auto immune issues as well....so we need to be checked for Hashimoto's a auto immune thyroid condition many of us have,..for this we need to make sure Drs r testing more then just TSH in addition we need the Free T3 and Free T4 and TPO antibodies....with Hashi's we can flare with being hypo one time and the next be hyper then have "normal" levels...so we also must have our thyroid ultra sound done to make sure we do not have nodules...once found we need to check this every 6 months for levels and to see if the nodules have grown.
Other levels we should check r our vitamin D and B12 as well as magnesium and potassium levels as they can cause many symptoms associated with Chiari.
For nausea that persist's a look to the inner ear may be helpful as all of these parts r in close proximity to the compression from the Chiari.
Keep in mind Chiari is not the herniation, it is the malformation of the skull...which is too small can causes the tonsils to herniate....with that in mind it is easy to see how everything in that space may be compressed as there is not the proper amount of space for ne of it.
The Pituitary gland is another area that those with Chiari can have an issue..a flattened Pituitary gland or a cyst.
Vision issues as well as hearing can be a problem...so a neuro optho may be needed to make sure u do not have a major issue going on.
Many with Chiari also have GERD issues which can cause nausea, throat and voice issues....and many with Chiari can find they lost their voice and have strange sensations in the throat and neck and jaw.
U may want to see a GI Dr to rule out GERD acid /reflux as an issue for the nausea.
So many Drs see the individual issues, but do not connect them as being part of the one major one Chiari.
Wow...great input. I had a full spine MRI about 3 years ago. No syrinx was shown. I do have a herniated disc in my thoracic. They also mentioned that it did not look like I had tethered cord so I guess it is encouraging my docs were looking for the right things. My symptoms haven't changed same old junk (no new junk however lol). Do you think this warrants another full spine MRI?
Yes u had a cine Mri. Showed good results except for mind attentuation. Chiari expert I saw said this was normal range. Eds I have never been checked for. My daughters have hyper flexible joints and I asked there doctor about it. She said eds is very rare (unless its the hupermilbiity one which is more common) but said genetic testing is super expensive. What r your thoughts
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