Avatar universal

Feeling A Bit Helpless

Hi Everyone,

This is my very first time posting to a health forum. I know our doctors normally advice against this, but at this point, I thought I would reach out for some opinions. I am extremely frustrated and scared, and worried about my future quality of life. My post will be a bit lengthy, so thank you to all in advance for taking the time to read my story.

I am a 29 year old female, I've been in fairly good health most my life. In 2007 I had some digestive problems that eventually led to the removal of my gallbladder. Since then, things have never really been quite the same for me digestive wise, but I've learned to live with it. My real problems started last year in 2012 with the very first migraines of my life. It started off with me losing my vision, either due to a "flashing zig zag" or what resembled a red blue and green spot light. It would last 20-30 minutes and then my vision would return to normal, followed by an excruciating headache. Eventually the migraines stopped, but now I have onsets of dizziness and vertigo that last 3 months at a time. I ended up in the ER feeling like I would pass out, and a CT scan of my head was done which came back normal. Both my Optometrist and GP originally suspected a migraine with aura, and prescribed me imitrex. It did nothing to help me, so I was referred to Neurology.

Neurology did a physical exam which I guess I passed, and ordered an MRI of my brain and cervical spine. Here are the results:

1. No evidence of parenchymal signal abnormality.
2. No intracranial mass.
3. Mega-cisterna magna incidentally noted.
4. Developmental venous anomaly in the right paramedian frontal
lobe also incidentally noted.
5. Mild inflammatory changes seen in the left maxillary sinus and
a few ethmoid air cells without evidence of air-fluid levels.

1. There is a tiny syrinx seen from the C4 level down to the T2
level (lowest thoracic level visualized on axial imaging). There
is suggestion of a larger syrinx at the T3 level which is only
partially visualized. Recommend thoracic spine MRI with and
without gadolinium.
2. No evidence of an intramedullary mass or abnormal enhancement
in the cervical spine.
3. Straightening and slight reversal of normal cervical lordosis.
4. Minimal degenerative disc disease at C5-C6 and C6-C7 without
evidence of cord compression or spinal stenosis.

I was told everything was normal, except for the syrinx but that it was too small to be the cause of any problem. An MRI of my thoracic spine was recommended as a formality. Here is the result:

1. There is a syrinx seen at the T3-T4 level measuring 2.1 cm in
craniocaudal dimension and 2 mm in maximal thickness, with no
evidence of an associated mass or abnormal enhancement.
2. There is another tiny syrinx seen from the T7-T9 levels,
measuring 1 mm in maximal diameter, without evidence of an
associated intramedullary mass or abnormal enhancement.
3. Mild dextroscoliosis at the cervicothoracic junction.
4. Mild chronic anterior wedging of the T11 vertebral body.  

Neurology still insists there is no reason a small syrinx would cause symptoms. I went back to my GP and he is very concerned how they blew me off. He's now saying he thinks I may have a Chiari Malformation but it may not be visible on the MRI findings. I was referred to a neurosurgeon out of the same neurology office I went to, but they dismissed my case over the phone saying there was no need for surgery or consult. My GP is now in the process of referring me to an orthopedic spine specialist to see if he will take on my case.

My symptoms have progressively gotten worse. I'm extremely fatigued, dizzy, I have neck stiffness. I get tingles and every so often a "bee sting" feeling in my left shoulder. My arms go numb during the night. I've had a lot of sleep paralysis. I am having a lot of GI symptoms now as well, such as food trying to regurgitate, sore throat, chest pressure. I have lost weight. My GP says he thinks a syrinx may be pushing on a nerve responsible for the valve on my stomach and that's why I'm having symptoms. I've had labs done to rule out anything auto-immune such as lupus, arthritis, sjogren's, etc. Everything came back normal. I've also seen an ENT to rule out an inner ear issue.

Needless to say I am full of anxiety which I'm sure isn't helping the situation. I have been prescribed xanax for the meantime, but it's effects are very minimal. I'm afraid that no one can help me here. I am anxiously awaiting to hear back from this orthopedic spine specialist.

Sorry I'm probably all over the place with this post! I really appreciate any insight.

3 Responses
620923 tn?1452915648

  Hi and welcome to the Chiari forum,

There are so many Drs that do not understand how Chiari and Syringomyelia do affect those of us with them.....

They also do not believe that Chiari is  nething more then the total length of the cerebral tonsil herniation...instead of what it is, the malformation of the skull that is too small to contain the cerebellum so the tonsils are forced to herniate....many of these herniations also create a CSF obstruction which can lead to the formation of a syrinx.....

Chiari is not always recognized as too many Drs look for the herniation to be 5mm or longer b4 they classify it as Chiari so ur mays be less then that but it can still be causing an issue.

A CINE MRI will help determine if u have a CSF obstruction due to the tonsils.....

Those with suspected Chiari should also have a MRI of the brain, the cervical spine, thoracic and lumbar spine, this will also help rule out disk issues as well as tethered cord......

Many of us do not find the help we need  as Drs with the experience with Chiari and related conditions are rare ......

Get copies of ALL testing u have done and the reports so it is easier for u to get a 2nd or 3rd opinion. it can be a lot of work seeing so many Drs but we do need to advocate for ourselves....

All the tests u have had so far are typical for all of us to have to rule out as they have similar symptoms to Chiari.

Hang in there and know u r not alone.
Avatar universal
I am a strong believer that the thoraic sphinxs cause gi problems that the doctors usually refuse to acknowledge. Even with a mri showing it, they still believed I have gerd when in fact gerd was the first thing ruled out. If you have no other choices with your current situation check out the clinical studies at the NIH. At a minimum they won't dismiss your symptoms. As for whether you have Chiari or not you might not and still have a sphinx, but you also might like Selma said. The NIH study wouldn't care if you have CM1 or not.
Avatar universal
I commend your doctor for advocating for you... as many doctors as I have dealt with in my life its rare.

There are some chiari institutes that will look at your stuff if you have one close to you but finding the right doctor, neurosurgeon specifically, is so important.
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