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Is it Chiari

Hi All,

Ive started noticing symptoms ever since I was 19 years old.. It started with this "dreamyness" and foggy kind of experience that would come and go every few months.. I had a ct scan done that revealed a 5mm herniation. The symptoms progressed to fatigue, worse dreaminess and poor vision. I also have a very stiff neck, however I do a lot of weight training and it seems to appear/get worse depending on my training. This last year I have eased off and the neck stiffness has virtually disappeared.

I was also diagnosed with moderate sleep apnea 2 years ago which seemed to appear the same time as the fatigue, as I had a sleep study previously which revealed I didnt have it.

Since this I have had a cine MRI done by a leading chiari specialist in Australia.. He believes my symptoms aren't related due to my chiari, as my mri demonstrated normal flow and no impaction. However I see a lot of symptoms that are very similar to mine including sleep apnea. As im a relatively fit 24 year old, I find it hard to understand why I would have it.

Currently im in hospital to rule out everything else, if nothing else shows up it leads me back to chiari, however after seeing the leading Australian specialist I don't know what else I could do?
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620923 tn?1452915648
COMMUNITY LEADER

  That info is conflicted .....not sure how it can be the same and corrected?

We do not always see the related conditions....but they can be there...

May I ask, what all was done during your surgery, did you have a dura plasty with a patch?

ICP is something many with Chiari tend to develop or notice post op from PFD surgery.,....build up or scar tissue can be another issue as well as

EDS is a clinical neuro test...and then once suspected  they may send you to a geneticist...but that is not covered in blood labs...neither is ICP....

Many with  Chiari are prone to auto immune and connective tissue disorders....so, do ask if all of them were ruled out....

I hope you get answers soon,.
Helpful - 0
10612124 tn?1411428141
Thank you Selma for the welcome.  I pray you are doing well.  

Yes, I had an MRI in 2013, it did not show any problems.  My syrinx is in the thoracic area. On the MRI though, it states it has not significantly changed since the surgery. My Neuro dr. office, gave me paperwork after my appt. that stated  my syrinx was corrected.   I do not have any related illnesses, that I see that would go along with it currently.  I had much lab work done this week, so they are looking for everything. I awoke with a malaise feeling and was in bed for 8 days, with total weakness.  No answers to date though.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum,

You said you had symptoms return at 8 months post op...may I ask, did they rule out ALL related conditions b4 your surgery?

A syrinx many times is only looked for in the cervical spine, but many with Chiari have been DX'd with one in the thoracic and lumbar spine.......

Ehlers-Danlos and tethered cord can affect the outcome of surgery...as well as the surgery itself may  have left some issues behind such as scar tissue...have you had a MRI since?
Helpful - 0
10612124 tn?1411428141
Hello. I am new here so bear with me. I have Chiari and was decompressed in 2012.  I was great for 8 mo, then the bad headaches set in. I started seeing a neuro this wk. that tells me my headaches are not chiari related but due to an accident in 2008. I am not so sure, but she wants to put me through intense physical therapy. I have enough pain in neck and head, so I am not sure how this one will go.  I am interestedin your case, please let us now how you do after this recent hospital stay, and what they may find out. My classic symptom was what they call the cough headache, what I call a brain freeze. You bend down, reach up, cough, blow your nose, lift a heavy object & it will send this rush to your brain and feel like your head is going to explode.  It is cutting off the flow for a split second and you end up with a horrific headache. Do you get this at all?  I have so many other symptom, that have returned but looked up  low CSF headaches and have all the symptoms of that, so will discuss with my primary on TU. Get copies of your MRI and look at the cd yourself .  Do you have a syrnix? This was my problem as well, so I am told that was fine as of my last MRI in 2013. They normally will not do the surgery unless it is 5mm or bigger, mine was 22mm. I wish you best of luck, sending well wishes and many prayers.
Helpful - 0
Avatar universal
Hi all thanks for the responses. I do feel extremely sorry for those with extreme symptoms and feel as though more should be done to advocate Chiari awareness.
The interesting thing is that my mother has lupus and although never being diagnosed with chiari a quick glance at an mri done 20 years ago seems to show it quite clearly. Ive been tested for lupus and and thankfully lupusfree. I am praying my symptoms are from something else not the Chiari.  
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi....not everyone with a cerebral tonsil herniation will have a CSF flow obstruction....and symptoms could be  from a related condition as they are similar....Ehlers-Danlos...can cause HA's, tethered cord, ICP, POTS< retrofelxed odontoid, syringomyelia, so many different things that can cause the same symptoms...and then there are none related conditions and issues like low levels of vitamins and minerals, and lymes, lupus, and MS....

You may have Chiari and it  may not be what is causing your pain...until more testing is done, it will be difficult to say....once with a true specialist they will (should) know which conditions to rule out.

Also look to your families medical history as you may find clues....

Praying the Drs you have now will be able to sort this out and help you.

  Keep us posted.
Helpful - 0
246139 tn?1424371973
It is so strange that I have seen people mention the "dreamy" feeling with this. When I was younger I used to tell people I felt like I was walking around in one of my dreams. It is the hardest things to describe. I occasionally feel it now, but nothing like when I was a kid. maybe I am more desensitized to it. But really, it feels more like I am a spectator to the things around me rather than actually being a part of the environment; like I'm watching television or something.
Helpful - 0
Avatar universal
Hi  
I just wanted to say to you that this*dreaminesss* symptom I had right from 15 years of age or so not always but occasionally
when I used to tell my parents about this they thought since I was a hard working student back then lack of sleep led to that *dreamy* symptom and they comforted me asking me to take rest in between studies
It was always dismissed as lack of sleep Even now I have it on some occasions which I assume (in my case) is lack of oxygen(poor blood supply).
I dont know why I really feel somewhat happy( dont get me wrong I am not happy that you have chiari and symptoms ) I am happy  that some one else has mentioned this *dreaminess* symptom  their chiari description .
Best of luck
Helpful - 0
1751596 tn?1406773160
"Normal flow" doesn't exclude brain stem compression which leads to sleep apnea. If neck stiffness correlates/synchronizes with sleep apnea in time then I think it's very probable your symptoms are chiari related.
You need to remember that the flow study is a subjective measure which means that for one it can be normal, for another pathological.
Helpful - 0
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