Chiari Malformation Community
Commom occurrence
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Commom occurrence

I was recently diagnosed with chiari and syringo just about 3 months ago. I seen my first neurologist on the 15th and they treated me like absolute crap. I found out out about my sm first, by picking up the mri (thoracic) report myself, because the nurse at my doctors office was too lazy to tell me why i need a second mri (confirmed the lazy part 2 days later) The first mri was for the constant "spine pain" and "beaten to death" shoulders feelings that have been going on for years. But had the second mri (cervical) done a few weeks later showed a 5.2mm herniation. Im seeing a second neurologist tomorrow, this one hopefully will be better. But long story short, every time i would start doing "research" i kept coming across this community, and now want to be part of it. It has been very helpful to see others that feel like me. i sometimes would think i was a hypochondriac, but now i have an answer.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.,

Once u have a DX and u get all ur testing done for related issues, u do not need to continue to see NL's as they dx...they do not treat...u will need a Chiari specialist  a NS,....

The fact u have a syrinx is a good indication u have a CSF obstruction....

  Make sure they rule out all the related conditions disk issues, ICP, POTS, ehlers-danlos, sleep apnea.....it is important to know about all related issues b4 u even consider if u r a surgical candidate.....as it can affect how u feel and heal post op......

Take a look at the list of Drs we have posted and use it to research the drs on the list as it is not a referral.
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I keep seeing dx, diagnose? But the two I am seeing are actually NS. I have a cine mri,  brain mri, and another cervical mri wends. The chiropractor I seen at the being of the year is being quite awesome. Stopped seeing him, insurance only covers so many visits, plus it gave me raging head aches,  now we know why. But i stopped in to get the reports from when i was seen, and his eyebrows hit the roof when i told him what was going on. he asked if i could bring my by mri to look at them. i know he is not a doctor but he can read the anatomy. so i got the "holy crap" of what was going on. then i seen this first ns and tried to ask him questions and bring up images, and i got asked to sit down. then to top it off him and his "partner" didnt even agree with what is going on. not liking that group.

so this other ns (have a good feeling about this one) will hopefully be better, and they both deal in chiari. on the look though for a spinal specialist that deals with chiari. but i do know i have no cfs in the back of my head. ugh this is a mess.

im going to try to play the "rule out" game with this ns tomorrow with the other surrounding condition. but i do have a book ive started full of my questions and own findings that the first ns didnt even blink at.
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sorry im on the look out for a spine specialist that deals with syringomyelia. my syrinx in almost 6cm long and almost fills the entire width.
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4175869_tn?1351117417
That is a great idea to start a book with questions! I'm sorry that you've had this trouble! It makes you feel so defeated when you know how you feel, but you keep getting pushed to the side...let alone to not have them know what it is! I hope that this next appointment goes well for you! Keep us posted!
Trish
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So I seen the second NS today, he said my herniation wasn't large enough for chiari?!? (5.8cm) not that i want to be deemed with this...but really?!? so he mainly focused on my syrinx and needs the Cine mri (tomorrow i do that) and gave me a Rx for Diamox. and ordered a lumbar mri to rule out tc. He also thinks i should have "trigger point injections" So I have some tests to do and some things to ponder.......and I think Ineed a 3rd opinion.
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620923_tn?1405964489

  Hi yes sorry dx= diagnosis.....we do have a list of shorthand we use in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186

I say this all the time, and I know u r not the one with the criteria it was the NS u saw today, but Chiari is not the herniation but the malformation which leads to the herniation....ugh....so the length of herniation is not the important issue, if u have a CSF obstruction and over crowding along with symptoms is what the Dr should be looking at.

There r many that have minimal herniations with severe symptoms...while some with larger herniations 13mm or larger with no symptoms at all....long and thing tonsils still allow CSF to flow, but a short wide cork will not...they lies the problem...the Drs do not know....so finding the right Dr is key.

I saw 3 diff drs, but I did much research and made sure that I knew who I was going to by my 3rd Drs....as I was not happy with the ones I was sent to....

The results of the CINE will help u get the attention of Chiari specialists....
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I agree Slema, with the CINE test telling alot more. And the more I  look for doctors that specialize in it in my area there only 2.

One is like 76 years old, not to be rude, but Im not to sure I'm comfortable with that. And the other is like a 3-4 hour drive away, trying to see how that one will play out.

Was even pondering a possible review with Chiari Institute in Ny.........
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620923_tn?1405964489

  That is where I wound up going as there was no one in my state that was able to offer me help or point me in the right direction....many of us need to travel....in reading about Chiari on the internet u will see the word or term rare pop up but chiari is far from rare, it is well informed Drs that is rare.

  Do not settle with just ne Dr...make sure u r comfortable with the Dr and his abilities.....
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Avatar_f_tn
Thanks for the short hands :) So if I've seen right you have CM w/o SM? May I ask what your measurements and variables and aliments are?
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620923_tn?1405964489


  Yes, I have Chiari...No syrinx...but, I do have EDS, tethered cord, bulging disks, cervical spinal stinosis, retroflexed odontoid, mild scoliosis, ....Hashimoto's thyroiditis,

My tonsils were 4mm and 6mm, but with the retroflexed odontoid and a CSF obstruction along with the TCS...my Drs felt the surgery was the best option for me.

I was having drop attacks which resulted in injuries that required surgery,...2 in fact...so it pushed me to find out what was going on.....again...lol...I had been on prozac and all sorts of anxiety and HA meds since I was in High school, and was told as a child it was just growing pains.,..so this was nothing new or something that just started when I turned a certain age.

I have bowel and bladder issues, vision , balance issues....depth perception....u name it just about I have it....

As I say all the time it is not the measurements but how it is affecting u, is it blocking CSF flow...that is more important then how long the tonsils r.
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I second SelmaS advice....it's not the length, but the size along with the shape/size of the back of the skull that tells the true story.  

My herniation was only 6 mm but the tonsils were "fat" and "stuffed" down into the foramen magnum.  This coupled with an underlying connective tissue disorder and a retroflexed odontoid process (with a pannus caused from basiliar impression) led to unbelievable pressure headaches and a whole host of other symptoms.  My csf flow was "scanty" at best.  

True Chiari docs will know this.  Good luck on your journey!!
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Avatar_f_tn
OK, it's been awhile, in that time have gotten lots of "numbers". 3 different herniation levels, 5.2, 4, and 3.8 ?! No Hydrocephalus, or TC. Fluid flow is very minimal in the back of my head. My neck is completely straight (reverse lordosis?) 1 DD @ T-7 pushing on cord and 1 herniated disc @ L-5. NS1 has said no to EDS. A syrinx that is from C-6 to T-1. No stenosis anywhere. And a Thornwaldt cyst in my nasal area.

Basically Ive found 2 NS,( NS1 and NS2) had consults with both, obviously they needed further testing. Since testing Ive seen NS1, and they are throwing me to the side and want to repeat test in 1 year with no treatment.

At the consult with NS2 he had suggested TPI and Diamox, for HA and shoulder/back pain. Well I had mentioned these treatment opinions to NS1 on the 2nd visit and he said they wouldn't help. So I asked what else was there, he told me to push threw it!!!!! Now dammit Ive been doing that for about 3 years, and I'm getting tired!!!

I see NS2 on the 4th of Dec to see what his course of action is. I have also made an app with a spinal specialist to see if he can help with the constant back pain and tight muscles. NS1 said they weren't connected to the CM and SM.

As for my set of symptoms swallowing issues, HA, head pressure and "thumpers", minor off balance, clumsy, extremely sensitive to light, random numbness, head/back/shoulder/hip/arm pain, body also feels tired and worn out, feels like i don't "absorb" sleep (working on a sleep study), joints seem to be tight and pop alot, almost blacking out when i go from sit to stand, those are the more dominant ones. These seem to have started 6 years ago slowly getting worse.

Most things I reported to my physician over the years, he would do a test or give me pill, but nothing ever seemed to help. Over the last eight months Ive noticed Im flip flopping word, letters, and numbers. Also "forgetting" what Im doing, saying, reaching for, like a pause for a sec.

IDK we'll see what happens, Ive got my finger crossed for this TPI for some relief in my back, get to go see that doc on the Nov 29th. Also starting to get thing together to send a packet to TCI.


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620923_tn?1405964489

  Hi..I have to ask were 1 or 2 a chiari specialist?

  Sending a packet off to TCI may get u some answers ...the popping and pain in the joints sounds like EDS...did the Dr that said no to EDS test u for it?

Good luck and keep pushing for answers <3
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Avatar_f_tn
No Selma, NS 1 and 2 are "familiar" but not specialist. And may I ask what test they do for EDS? NS1 looked at an MRI and said no, just wondering. Im trying to find anything that may help me on this up and coming visit on the 4th.

Thanks for the luck, I really need that :) <3
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620923_tn?1405964489

  To get an idea they ask some questions and then there is the Beighton Score it is for hyper mobility, but not all with EDS are hyper mobile and the joints the Beighton test looks at r not all joints just a few that may have an issue....it is a total of 9 points and I had a 7/9 as I could not bend over for one of the tests as I would have fallen over,...lol...here is a link...http://www.hypermobility.org/beighton.php

There is more info on this and EDS in the EDS group here on MedHelp

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
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