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...yes, many times there is compression of the pituitary gland n that can cause hormonal issues....a MRI should be able to indicate if this is an issue for u.

   Sorry to hearvu still do not feel well, Chiari can affect the sinuses .....and u do need to give it time.....

I pray u feel better soon!

  "selma"

[lagging]

Hello hope you are doing well. Its been one month since my sinus surgery, facial numbness and pressure headache are stlll there.  I am headed to my 4th NS and hopefully will find more answers.  Recently i found out i have an hormone imbalance, and i am being treated for that now.  My question can chiari type illiness cause hormone imbalances?  I know the thyroid can be effected but what about other hormones?  Hope to hear back from you.

[lagging]

hello my medhelp friend, just thought i would check in with you.  I had sinus surgery 8 days ago.  They initially scheduled the surgery to remove a large concha bullusa (air pocket) from my sinus area, i had 2 CT scans showing no sign of sinus infection or disease, so there was alot of debate whether to have the surgery done or not. But because i was havimg so much pressure in my face and headaches the ENT surgereon thought i should have it removed.  The operation was only suppose to be 1 hour.  Well once they started in low and behold they were very surprised to find chronic sinus disease in sinus area behind the eyes and forehead,  the concha bullosa burst during the procedure and was filled with fuild/puss, the operation took 3 hours.  So everyone seems a bit puzzled as to why the sinus disease did not show up on the two CT scans, (one in June and the other taken in Aug).  I am recovery ok.  The pressure in my face is gone, but i am still having headaches.  but they tell me thats normal.  Prior to my surgery i went to another NS surgeon and he spent a fair amount of time with me.  He looked at my cervical MRI and told me i did not have Chiari. However he felt that all my labs are pointing to ruematory and that i have elevated CRP and SEDS rates.  He thought i should proceed with the sinus surgery in which i did.  So now that i am recovering from sinus surgery i am now going to to see a Reumatory (sorry on spelling , i am still on pain meds for sinus) My post op labs came back showing I am now Hyperthyroid, which this is a first because i have always been Hypo (under active) so now they are going to start reducing my thyroid med,  Wow this is all so overwelming at times, but I am just taking one day at a time.  Post op recovery is no fun, but I am feeling better each day.   thanks for listening.  lagging

[lagging]

thank you for your response.  my question to you;  was that the first MRI of your neck, the one dr bucci ordered? or did you have other MRI's and they just missed it? Also once you were diagnosed, what was your treatment and how are you today? And one last question did the pressure you feel, did it feell like it was in your sinuses? and did you ever hear boiling like sounds in your ears?  and feedback is much welcomed.
thanks Lagging

[selmaS]

  Hi and welcome to the Chiari forum.

We r always glad to have new Drs names added to our list.....so please add this one to our thread of Drs when u can.

And thanks for sharing : )

  "selma"

[ahedden]

I was misdiagnosed for 20 years.  When I finally found Michael Bucci in Greenville, SC, he knew what was wrong just by my symptoms.  He told me many people are misdiagnosed with Fibromialgia. I guess that is because we hurt on a daily basis and get extremely tired.   Dr. Bucci had me do a neck MRI and he saw the results immediatley.  My neck felt like it would snap completely off at times and the pressure was unbareable.  I was told this happens in 1 in every 500.  It saddens me to see some of the comments where children have this.  It's something they will live with for the rest of their lives.  

[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

[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]

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]

  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]

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]

  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]

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]

  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]

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.  

[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.  

[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]

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

[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]

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 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]

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.  

[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

[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"