What type of MRI confirms Chiari?

[lagging]

I recently had two MRI's , one of the neck the other of the brain, my question is;  would either on of the MRI be able to diagnosed Chiari? or do i need a full spine MRI
desperate for answers.  thank you

[selmaS]

  Hi and welcome to the Chiari forum.

  The MRI's u have had r sufficient to dx chiari....the full spine MRI's r to rule out a syrinx, and tethered cord, as well as disk issues.

   There is a CINE MRI that is also a brain MRI , it is also called a flow study, this is to check for a CSF obstruction, it would indicate a syrinx if u had an obstruction.....and it also helps  the dr look at the smaller areas to see just how this area is compressed.

   Glad to have u here, but sorry for the reasons that bring u.

       "selma"

[lagging]

thank you so much for responding.  I am happy to hear my MRI will help if it is in fact Chiari.  I am trying to get into a neurosurgeon this week.  I will keep you posted.
thanks again
lagging

[selmaS]

  Just wanted to point out one thing...not all NS's will recognize chiari as an issue and say something to u.....so, do get copies of ur MRI and the report so u can get 2nd opinions...even if u do get a dx of chiari u want a few opinions b4 u choose ur NS!!

  "selma"

[lagging]

that is interesting...why do you think doc's don't recognize chiari?  Also do you know if chiari effects the thyroid function?  I have been flucuating on my thyroid levels, and also have a ton sinus and head pressure.  CT sinus shown a concha bullosa (air pocket) but not infection.  I also have a heniated c5 disc in my neck.  I have an appt with NS, and he does list on his website that he treats Ciaira Malformation.  any other infor you can give would be appreciated.  Right now I feel like i am being passed on from doc to doc , primary, care , ENT, neurologist, endo and now NS.  I hope i can get relief soon.

Lagging

[selmaS]

  It is what most were taught in med school...they feel it is "normal" for the tonsils to herniate in time with age bcuz of gravity.....

Most also feel that it is an incidental finding.,and will not cause symptoms....it is very frustrating  as we all know too well that it does cause symptoms and it is something we need to know about,.

Yes, many  with chiari myself included, have had a thyroid issue...most may deal with an autoimmune thyroid condition known as Hashimoto's thyroiditis.
When getting ur thyroid tested u also need to check the free T3 and free T4, and TPO antibodies as well as TSH.

Sinus issues are also related to chiari....and the disk issues....we all seem to have them too!

Make sure the NS not only treats chiari but does his own research on chiari and that it is a focus of the practice....

That passing back and forth from dr to dr we call "the royal chiari runaround"...it is sad but we all tend to have this experience with drs.

  The big issue is they r not connecting the dots, or symptoms back to chiari and r looking at them as individual issues and not seeing what is causing them....

  Keep pushing for answers

    "selma"

[lagging]

I have been doing alot of reading on Chiari since our my last post.  I am not even sure that is what i have but I am armed with lots of questions for my NS (who btw does treat Chiari Malformations, according to his website)  If you would be so kind ,,, I have several other questions i would be interested in knowing your opinion ...I read that Chiari patients have sudden headaches with coughing, sneezing or laughing, but i only get the headache when straining,,,my question is do you think all chiari patients get these headaches?  also the main problem i am having is a constant pressure in my head and numbness to facial area.  Pain seem to travel to my lower back.  The pressure in my head and fulliness in my ears is something i live with everyday, some days its worse than others.  I also get reoccurring UTI's which i am not sure if that is related to my problem or not.  I am very fatigued and easily break into a sweat with any activity.  I am not over weight and only 48yrs of age.  I feel like i am 90 when having to go up a flight of stairs.  I know there is something wrong going on.  The cervical MRI show a herninated c-5 disc putting pressure on my spinal cord.  A sinus cat scan show a large concha bullosa in my right turbinate, but the ENT surgeon says this would not cause these types of sympoths.  My appt with NS isn't until Oct 14th which seems like a life time away.   any advice or infor you are willing to share in greatly appreciated.  thanks lagging

[selmaS]

  Hi...have u had MRI;'s of the thoracic and lumbar spine?...u need to rule out syrinx's and tethered cord, with the UTI's it could be either as well as chiari.

Do u feel additional pressure if u try to walk on ur heals or toes?It is a test the NL will do....

The other possibility is ICP...with the pressure u describe that is also a possibility.

Not everyone experiences the same type of HA's or describes them the same.U do have exertion HA's so I wonder if u do not realize what is meant by the pain associated with coughing, sneezing,...I would liken it more to of a ice pick jabbing...for a few minutes.... with laughing tho I was diff too, I would gag, and then choke and almost vomit and  end with a HA....we r all diff so it doesn't really matter what type of HA's u have, u have them as well as a few other symptoms going on.

Many with chiari also have disk issues so getting ur whole spine MRI's helps check that as well as for TC and syrinx's.

  BTW I was 48 when I was finally dx'd with chiari too

      "selma"

[lagging]

thank you so much for your insight and advice.  I only have a MRI of brain and neck.  When straining, i feel a throbbing pulse coming through my nostils accompanied but severe pain, which last for about 3 mins.  Then its stops and i just go back to the pressure feeling in my head.  I didn't notice a difference in pressure when walking on my toes or heals.  When you were diagnosed was it the spine MRI that showed the most evidence or was it the Brain MRI.  Oh one other thing is that sometimes when i eat i feel like my food is traveling up to my sinus area, or my swallowing feels funny.  I know its weird I am just wondering if this has ever been discussed.  My mid back aches so I am not what that is all about but I am staying away from pain meds for now.  I am going to pain mgmt dr next week, this scares me as they are talking about injecting my neck with cordizone to relieve pressure to the spinal cord, i am nervous about doing this proceedure before seeing the NS, but my doctor is recommendiing this procedure for relief.  currently i am taking advil to relieve pain.  I am getting depressed but not on any antidepressants.  I've been taking xanax at night as this helps calm me down and also helps me sleep.  I am hoping to get through this and get help without having to become relient on narcotics.  Meditation and deep breathing helps at times.  thanks again for your posts and advice.  lagging

[lagging]

opps i accidentally hit the "report" key so I hope i will get your responses and didn't block you.  sorry i mis read I thought it said "reply" and i hit the report key and so now it shows and blocked symbol.  darn it.  

[selmaS]

  We all may feel this in a diff location depending on where our obstruction or compression is, that affects diff nerves....so swallowing etc will be affected if those nerves r impinged .

My Cervical MRI revealed my chiari, and warranted the Brain MRI w/wo contrast.

Many chiarians do have sinus issues, bcuz of where they r located when there is over crowding they get compressed as well as nerves.

Depression is yet another problem bcuz of brain stem compression....our brain stem is our control center for our bodies, our emotions, etc....

  Make sure ur NS is a true chiari specialist and get a few opinions, and go with the one with the most chiari experience that u r comfortable with.

    "selma"

[lagging]

I lived in Nor calif and i am having a hard time researching NS that specialize in Chiari.  How do I find NS that specialize in this feild? any suggestions?  I hope my NS will be able to determined if this is in fact what is wrong with me.  I will keep you posted.  btw i was able to unblock you.  thanks again for all your help
lagging

[selmaS]

  We do have a list of Drs that was compiled by the members of their drs, u still need to research them, and I suggest u see a few to compare so u can find the one that is best for u. U need to be comfortable with that dr personally as well as professionally.-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Keep in mind u may have to travel to get to a true chiari specialist...most of us do.

   "selma"

[lagging]

If you don't mind sharing...did you have surgery for your chiari?  how do you manage your chiari?

[selmaS]

  Hi...yes I had surgery in May '09...if u go to my profile page u can read my journal......

I do not work, I do not drive....but, I have a few other issues that have yet to be dealt with...I also have EDS, and tethered cord....so I still deal with symptoms from those.

I avoid things on the list of things to avid for those with chiari/syringomyelia...(it's in the Health Pages)  and I take it a day at a time...I do things in moderation.....and I keep my expectations down....

But, I am enjoying life...I go to NYC and visit my DD, and go all over doing things....I know my limitations and no longer push beyond them...otherwise we pay  for it....

Chiari is a life altering condition, and I accepted that....and am still adapting to it.

    "selma"

[lagging]

well I need to vent. So i appologize in advance, but i think you can relate to this.....I went to one of the listed doctors today.  Orginally they couldn't get me into until Oct 14th but they had a last minute cancelation so i jumped at the chance.  The day before (yesterday) i spend all day running around getting my images/reports/lab work so i could take to the appt.  I even filled out all the questionaires in advanced and faxed them back.  Today i drove 2hrs to see this NS, who basically spent 10 minutes with me.  He told me that my c-5 herninated disc did not required surgery so i was relieved.  He told me to go to pain mgmt and phyical therapy.  He wouldn't address any of my other sympoths, and told me the pressure in my head was probably sinus and that i should go back to my ENT.  When I brought up CSF issues, he said my MRI report would have noted that....i asked if he looked at my images, and he said he couldn't open the CD.  Which i doubt as i checked them before and they opened fine. urgh!!!!!!!!  He had no explaination for any of the other sympoths and said he would send my ENT a letter telling her i am clear for sinus surgery.  I was well prepared and listed all my sympoth neatly and clearly on one peice of paper.  He didnt' even look at it.   I was so upset when I left there,   it was a long ride home.  The pressure in my head is terrible and so i is the neck pain, fatigue, muscle weakness, etc.  I have appt with another NS in two weeks, I hope he can help, otherwise i feel i am going to be stuck like this.  Any advise.  thanks laura,,,btw i read your journals, and you are an amazing person.  

[lagging]

BTW the NS i went to was at standord medical center in palo alto, ca
He seemed pre-occupied and didn't offer any research or investigative work on his side to try and find out what is going on ...he was strictly text book and unless something was clearly obvious he seemed like he didnt' want to be bothered.  So disappointing.  I am really getting tired of people treating me like its all in my head just because they can't find out what it going on.   This is really wearing on me, my husband and my family.  I wish it would end.  

[selmaS]

  This is y I say u need to research the Drs, the list is not a referral...not all of them may be the tops in chiari, but a member here was treated by the dr and liked him/her so they added the name hoping someone else would also benefit.

Not everyone will like every dr, no matter how good with chiari they r...but u do want one well experienced and informed.

  And the other thing is many of the chiari specialists may refer a PT to PM or other DRs as a means to rule out other issues.
But for a dr to give u 10 mins and not even see ur MRI's...that just is not right, but it is very similar to what happened to me in Philly...the Dr was over an hr late for the appointment we could hear him chatting away in the next room, sounded more personal then professional...and gives us 10 mins...then charged me as an outpatient??

I do not understand Drs at all....they can frustrate us.....but, do not give up....I had my bad NS visits in the summer of '08 and I finally saw a chiari NS in Feb '09 and scheduled for surgery in May '09....it can take time....the medical field tend to move like snails...but, once u have the right Dr it is so worth it.

   "selma"

[lagging]

thanks for the encouragement.  I am feeling so desperate and i need to take a step back and collect myself, and then get back on the horse.  Financially its hard for me to find a good NS and my medical insurance is limited.  The NS today is telling me its my sinus area and that no way can your back cause these types of sympoths.  Even my neurologist is in agreement with him.  when i described my pressure headaches and facial pressure to him, he kept steering me in the ENT direction even though my ENT is saying that no way are all my sympoth caused by a sinus infection.  Not to mention the UTI,s, in which the NS said is caused by a weaken immune system for all the antibotics.  So here i go again down the ENT path.....however i am still going to see the other NS in two weeks.  thanks again.  I wil keep you posted.

[selmaS]

  Well our sinuses can be affected...I had PND big time and always was congested and felt like my lungs were filling up....now they r clear...it  has stopped!

  UTI's were another thing I had plenty of, but mine were also tied to chiari and tethered cord...

  Antibiotics do play havoc with our system...it kills all bacteria..the good with the bad...so, I have to take DIFLUCAN every time I take an antibiotic bcuz I get a yeast infection....and it messes with the digestive track as well...since the good bacteria is killed off and not there to break down the food...it is a vicious cycle.

  Good luck!!

   "selma"

[lagging]

hello....just wanted to ask you did you ever suffer from facial pressure and nosil pain, eye pain...thats is where most of the sympoths come from.  just curious.

[selmaS]

  Yes, I have had all of that.....and when I was much younger my Drs felt it was a sinus issue...chiari does affect our sinuses and that is y we have these pains....

   "selma"

[lagging]

ok, i don't mean to sound like a broken record.  After going to two NS and they are both telling me its my sinuses and i really fustrated.  I am going to my 3rd NS in two weeks, I am going to ask him about doing a CT head scan and a MRI of my spine.  Why are NS so resistant to doing more research to find out what is going on....I am stuck with this pressure headache and facial pressure daily now.  My ENT is the only one who thinks its neurological, and the NS and saying i should get a new ENT.  I am scheduled for sinus surgery Oct 24th to remove a large concha bullusa, but my ENT says that this can not be the cause of all my sympoths.  I think when I go the new NS (who list that he treats Chairi patients) i am going to ask him to rule it out or do all the tests to rule it out. In the meantime, i have been seeing a pain mgmt doctor that is wanting to do nerve blocks, and pain injections in my neck for the c5 herniated disc.  He has also put me on pain killers that do nothing for the pressure.  wow, i can't believe what a mess i have become.  I am also going to see my eye doctor this week for the eye pain.  OMG i don't think there is a doctor i haven't been too.

[selmaS]

  It is the way they were taught in med school, that chiari is not much to worry about, so it much be something else...unless they research and focus on chiari they may not be of much help to u.

SO many of us do the same...hence y we call this ":the royal chiari run around"....

Good luck with the eye dr

    "selma"

[lagging]

eye appt showed "pale" optic nerves, which warants furter checking by another specialist.  Nothing to be too alarmed about but eye dr isn't taking any chances considering everything else I am going through.  Is there any impact to the optic nerves with chiari?  I am having sinus surgery monday to eliminate the large concha bullusa to see if the help elevate facial pressure and headaches. Oct 14th i go to another NS for his opinion.  I am just going to ask him about chiari and if it is even apossibility with me.
take care my friend.
lagging