Is it Chiari or CSF leak

[skivue]

I've been back and forth from one doctor to another, In the last month I have had 3 MRI's 1 regular, Cine Flow study, and the 3rd was a blood flow MRI, Ive had a hearing test and a VNG test, and still they can not find out what is wrong except the Chiari and the neurosurgeon says no its not the chiari causing your problems. I have a 5mm extention.& All neurological tests seem to come out fine.

Symtpoms - I have are headache pain in base of neck neck pain upper back center spine pain dizzyness (off balance) i have had tremors in upper body, tinglying in arms, left leg pain. as well as a occasional burning sensation in the upper middle spine and occasional burning sensation on the left side of the base of my head closer to the ear. Also if i raise (chin to air) or lower head (chin to chest) my head i get dizzy and fee a burning /pulling sensation in the upper middle spine and bottom of the neck

When I seen my neurologist on tuesday he put me on Gabapentin 100 MG for the pain, but said we dont know what is wrong.Curious my husband and i decided to do some research and I am/We are wondering if it is possible that I could have a CSF leak, and they are missing it? After reading up on it lastnight my symptoms fit and it can mock Chiari.

Could this be possible? If so is the burning sensation something i'd feel?
No i havent hit my head, nor had any spinal fluids take, wasnt in a car accident nothing. All this started by waking up dizzy sick to my stomach with a headache and neck pain I do however feel a grinding in my neck if i rotate it, and my back cracks easily with just movement.

[selmaS]

Hi and welcome to the forum.

Since u posted to an older thread, u may not get a reply from the original poster as they have not been active recently.

I would suggest u get to a true chiari dr in order to get the right course of treatment.We do have a list of drs on the forum...the names r from the members of drs they have been to and liked...u do need to research each dr u consider going to, the list is not a referral, but a place to help u get started.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Please start a new thread to express ur concerns or to share more on ur chiari journey
We r happy to have u join us, but sorry for the reasons u had to seek us out.

"selma".

[selmaS]

  I agree, it should be obvious....unfortunately it is not always as they do not have a clue what to look for , how to measure...etc....it is downright scary.

[billyz123]

Don't worry too much about the distinction... I was looking up how dysphagia links to Chiari and found some papers/studies by Dr. Milhorat from the 90's. It seems that morphemetrically (sure, that's a word)... it should seem pretty obvious to NS's from measuring MRI's in a certain way.

[selmaS]

  Yes!...most of the time when someone says they have chiari I usually try to remember to ask is it congenital or acquired...some have no idea....and it is important that we know a PFD will not help if the issue is a leak and not the amount of room u have....but, the leak will pull down the tonsils and cause the same symptoms of chiari.

This is not a easy condition to deal with, dx or treat.

[billyz123]

So i guess the real question is to Itchyarms... how did you find out it was a CSF leak? How did it happen, and what's to stop it from happening again?

[selmaS]

  Chiari is the malformation of the skull not the herniation...many use the herniation to classify it as chiari when in fact that is not always the case.....there is spontaneous CSF leaks and it is idiopathic in nature....no known cause...the leak itself can pull the cerebral tonsils down...just like a LP that is drawn too quickly....so, chiari is not the real cause of the issues, but the symptoms r chiari in nature. And y we r told to avoid LP's if possible or to make sure the tech doing the procedure knows u have chiari and to do the draw slowly.

  So the question is, was it chiari or a CSF leak.... there is congenital chiari and acquired chiari.

[billyz123]

I really don't understand this... Obviously there are going to be lots of CSF problems if you have Chiari Malformation and your tonsils are blocking proper flow. This is because the fluid production itself starts within the brain. Blood Patches certainly have a great chance at fixing CSF leaks but that's all I know. Why they happen, what our body's natural response to leaks are... i have no idea. But what I do know is that Chiari Malformation has been defined as a developmental disorder (or congenital disorder) which is all based on your skull. In CM, your skull is too small to hold it's contents (the brain) and the skull is bone - which means it's not going to adapt to anything. Which means that the only option is to directly alter the skull.

And if the Chiari is causing these leaks, then why keep fixing the leaks... fix the Chiari. I really don't know if Chiari can cause leaks though so maybe somebody can school me on this. What I do know is that I have excess fluid coming out of every single possible place in my head (eyes, ears, nose, mouth) and it is really a crazy chore to be constantly trying to even out all this pressure. The only things I've found to be helpful are 1. rubbing my finger around in my ears trying to clear pressure and fluid. 2. keeping my neck relaxed and the posture as neutral as I can. 3. lightly blowing my nose and keeping my sinuses clear. 4. Moving my eyes around... like looking up seems to get a lot of fluid going for some reason.

blablabla, i'm done

[selmaS]

  Hi and welcome to the Chiari forum.

Yes, inter cranial pressure or pseudotumor cerebri can cause the tonsils to herniate and cause much of the pain and symptoms....once this issue is taken care of the person can feel much better.

A CSF leak can cause tonsils to herniate as well...and this is always looked at as a possibility. I am surprised tho that ur herniation is 15 mm's with a leak, it must have been going on for some time to get that long.

[itchyarms]

I have C1M with a 15mm herniation.  I've had terrible headaches, dizziness, neck pain, etc. I had 4 blood patches done last month at Duke.  I am so much better since. Please do not rule out csf leaks -- I did not have any vomiting or sensitivity to light and my headaches were bad, but not the point where I couldn't stand up.  Since my patches I am a new person - unbelievable really.  I still have Chiari, but there are many times when it turns out to be pseudo Chiari as low pressure can sometimes CAUSE a Chiari and once the pressure is fixed, it can actually ascend.  I will have a follow up MRI in 6 months or so to see if the fixed leaks and adjusted pressure have in fact also helped the chiari.

[alaska5]

I have many of the same symptopms.  I have a chiari malformation diagnosed last year, but they said it wasnt causing the dizzines, blurred vision, shorness of breath, head aches tingling/nubness in my legs, and the overwhelming pressure in my head , and cramping in my back and neck. About 8 months of this problem a salty drainage started leaking into my mouth, and my symptoms lighted up a little. I then went to the doctor AGAIN and they diagnosed the CSF leak.  They are still unsure which one is causing the other.  You should definatly have them check for a leak in my opinion.  mine is in my head but they can be in your spinal column as well.    im still figuring out if i need surgery on the malformation or the leak..good luck!

[selmaS]

Hi...well it is important to have ur entire spine checked...that is my opinion.I was dx with tethered cord recently, had I been to a dr ready to treat me last yr with just my cervical  and brain MRI's I do not think that I would get relief since the TC is pulling down on my brainstem to the point it is grossly elongated.I was told that by doing the TC surgery first may allow the chiari and brain stem to retract, there is not proff positives on ne of it, but if I can avoid the decompression I am going to take it.

May I ask who ur dr is?

If u r in the forum the thread is on the first page...I have included the link.U may also want to read some of the info in our Health Pages...the welcome at the top of the forum has links to them.

If I can help with ne thing else ...please ask


http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/693000


"selma"

[skivue]

Thank you for replying Selma

Im pretty sure the MRI's were just of the head and neck I dont know about the thoracic and lumbar could i tell this by the MRI results I have in hand? I have all 3 of my MRI films and reports.

I seen on another Chiari board about the doctors and the neurosurgeon I seen was on the list of ones who specialized in Chiari for my area. I searched for the post here but could not find it. Can you provide the direct link?

Then I guess a CSF leak is out of the question LOL because I am not experiencing those drastic symptoms.

[selmaS]

Hi and wlcome to the Chiari forum.

I see u had several MRI's but u did not mention what area's were covered....I assume brain and cervical spine....but did u have ur thoracic and lumbar done??U need to have them rule out syringomyelia  ( syrinx) and tethered cord.

Also, a NS that is not a chiari specialist will most likely not attribute the symptoms to ur chiari.

U deff need to see a chiari specialist....we do have  a thread here of drs the members have used and liked...all drs should be researched by u to be sure they r right for u.

If u still need assistance in locating a dr, please let us know.

As for the CSF leak- there is something called spontaneous CSF leaks, but u would be so miserable u could not move...u'd have vomiting, and not be able to stnad light or sound.....all with chiari have this with our HA's but this is so much more severe it is hard to imagine.

The right dr will lead u to the right treatment.

I hope u continue to post ur questions and concerns and continue to share ur chiari experiences with us.

"selma"