Chiari Malformation Community
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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About to give up

Hi everyone, this forum has helped educate me so much these past few months.  I have a good medical base of knowledge with college and my past 15 years of neurologist vists ( I'm 30 now) I thought I knew a lot... But this forum has been a Godsend.  especially emotionally.  Very fast run down- chronic headache at the base of my skull for 15 yrs.  everyday for 11 years.  Dull and without fail.  Vision problems and loss of left eye vision periodically.  Blurred pressed side view vision at times.  My Back "went out" 5 years ago.  It got better but then it hit again.  100 % Fibromyalgia diagnosis with all points responsive 4 yrs ago.  8 months ago I began having full body attacks of nerve pain shoulder to toe oh sharp, burning, stinging, stabbing pain.  Sometimes a throbbing pattern, sometimes not.  Lasts from 2 min to hours upon hours.  My hands and feet go pins and needle stinging numb constantly 1-12 hours- when I use the rest room, without fail when I bathe, and various other unpredictable times.   My current doctor status: 5 months ago They found a syrinx t5 - l2 ( won't tell me width).  First neuro NS wouldn't read the diagnostic report and said table decompression for a small disc herniation  was no prob with syrinx as well as saw shadowing and spasticity issues around my tonsils.  But, he said he saw no syrinx and said they were only caused by tumors anyhow and if I had had it as long as my symptoms ( a tumor) I'd be dead.  He obviously was not educated well on syringomyelia and I had payed out of pocket ( I live in the panhandle and options are few) so I went to dr luciano at Cleveland clinic.  They failed to mention about 8 things in my diagnostic report which I asked the admin assistant to fax me, including a Disc Herniation !!!!!!!!  They said NOTHING but we will follow up with you in 6 months.  This all from his assistant.  I am concerned because even my visit notes and medical pain history weren't correct.  I wasn't even supposed to have copies of these things, but now I'm more frusterated because I feel like nobody takes me seriously and I'm about to lose my job and I'm the breadwinner .  Moreover I am fighting for a semblance of a quality of life.  I am sorry- I am at a loss-  could it be Chiari 0?  They wouldn't even tell me on 3 follow up calls how many millimeters wide the syrinx is!  I think they are avoiding it for insurance reasons ?  Or maybe it isn't syrinx pain- It just all seemed to be coming together.  The cape like pain I have had physical therapy on for 13 years...   Anyone have any ideas?
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620923_tn?1405964489

  Hi....I am so sorry u r getting the "royal Chiari runaround"  many of us have been thru this and it can be discouraging but this is when u have to push back....do u have copies of all the MRI's u have had done to date?

If not, call the facility and request them....say u r going for a 2nd opinion.....

Research Drs and see who else u feel is well experienced and informed on Chiari and syringomyelia and related conditions  and send ur info to a few and then see a few and compare them.....

Without seeing ur MRI and the reports it is diff to say if u have Chiari 0...or what is causing ur issues, but a syrinx can cause many of the symptoms u did list.....make sure u have MRI's done of ur cervical , thoracic and lumbar spine, a CINE MRI, and testing for sleep apnea, ehlers-danlos, ICP,POTS...etc.....

Keep in mind we r also not medical professionals here either....but, there r many Drs, and NS's that do not know chiari either...so u do need a true Chiari specialist.

  
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Thank you so much Selma- may I ask what sleep apnea would have to do with it?  My fiancé says I wake up gasping for air and seemingly stop breathing from time to time.  
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620923_tn?1405964489

  That is sleep apnea when u wake gasping for air....and it is not a good thing, u really need to have a sleep study done and get on a breathing machine as u do not want to stop breathing and not wake up.....

Sleep apnea is prevalent in those with Chiari and is something some Drs do not think to look for...have u told ur Drs about this?
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