Diagnosis

[illjill29]

I have not had the officail dx for Chiari Malformation as I am awaiting an upcoming visit with a specialist.  The local docs have bounced between PTC and MS.  They have even gone so far as to say that maybe I am just struggling with a conversion disorder.  UGH!  My MRI has already been read wrong by this same team once before as they told me that I may have metastisized cancer to my brain that were causing by symptoms.  They saw one lesion then a week later saw a second lesion on a second MRI.  Because of MY diligence to take home the disc and review my own MRIs were we able to recognise that the second lesion was there during the first MRI only missed by the experts.  The MRI only shows about 5 slides where there is (in my opinion) an obvious herniated tonsil.  I suffer from daily headaches that are mostly in the back of my head and effected by my position, lump in my throat that sometimes feels like it is choking me, vertigo, ear fullness and ringing in ears, I have holes in my ear drums and bubbles on the ear drum, I frequently hear/feel bubbles roll up my neck and into my skull, slight clumsiness and difficultly feeling out of sorts in my mind from time to time.  All of these symptoms are largely influenced my position, from sitting to standing or from laying to sitting or even turning my head sharply to the left or right.  All of these symptoms esculated after I had a lumbar puncture on 10/14/11 where before I only had mild headaches and vertigo.   I have spent countless hours researching Chiari Malformation type 1 along with PTC and MS.  I would not say that I am an expert but I am left with very little confidence in my local doctors.  I guess my question for you all today is...have you experianced difficulty getting the proper diagnosis?  Please feel free to share your thoughts on my condition as I have described.  Thanks!    

[illjill29]

Thank you all so much for the encouragment!  I was beginning to given in to the discouragment from the doctors but this forum has really helped me refocus on taking care of my own health.  I realize that I must be in the driver's seat to make sure that I get the care I need.  Like your head injury, I do believe that the Lumbar Puncture triggered my symptoms getting to point that they interupt life.  I am certainly encouraged to hear your story, thanks!

[zygy2]

Sorry to hear how hard it is for you to get some answers! Sadly that is the way it goes with Chiari, as for the Dr. laughing at you about Chiari, she does not have a CLUE!  So many of us get stuck with a Dr. like that and it takes a lot of work to get around them but you have to keep going!  Yes, I understand we are born with it but lots of us have triggers that bring on the symptoms!  I had an accident with concussion and even though I had some weird things over the years, things went crazy after the hit to my head!  I too have high pressure which is why they tell me I keep getting leaks after my surgeries!  Strange things happen with Chiari, you need to find someone that believes and listens.  Too many think they know Chiari but they have no idea what that word really means and how different it behaves in each person!  

[illjill29]

Thanks for the information!  I have read some about a MRI where one sits up instead of lays down as it better shows the position of the tonsil.  I have mostly read about that as it relates to cranial settling.  Is that a test that is every used for Chiari?  
Your right!  I am sure I will cry once I met the doctor that actually hears me!  Thanks again for the information!

[illjill29]

Yes I have suffered from the mild version of the malformation for sometime but have always managed to ignore them or not put the pieces of the puzzle together until the lumbar brought all of the symptoms to a whole new level.  My sypmtoms have truly interupted my life and I am hoping to get a Dx along with a strong consideration for the surgery.  Although I know that I need to further research the surgery before moving forward but I am glad to know that you do not regret it.

[selmaS]

  A CINE MRI is similar to a reg MRI in that u go into a tube  but it is usually done in 2 parts...the first is very much like a reg MRI...but the 2 nd part, they bring u out to inject a dye or contrast and they put a clip on ur finger or leads on ur chest to track ur BP to see if ur CSF pulsates with ur BP...they record the flow in real time to see if u have an obstruction,...the contrast lights it all up.

Once u find a Dr that validates all u feel u might be like me...and cry ....lol....I felt foolish but it took so long....

   Keep us posted on ur Dr search : )

    "selma"

[linnielou232]

That is exactley how my doc explained it to me.  We are mostly born with Chairi and I have alway's been a healthy person but when I started my 40's my symtoms started to appear.  As my doctor said as we age our bones get weaker and that is what start's the symptoms.  Also like Selma said when we are born with this we suffer thing's we don't really think are abnormal because we are used to dealing with them, but for me I didn't have any symptom's until in the 40's.  Once I started having them.  It was like Wham,  they evenually got worse and I had no other choice but to have surgery which I don't regret.

[illjill29]

Thanks for the well wishes Linnilou!  I called my doctor early on in this process to ask her to consider Chiari but she laughed and told me, "That is like neuro 101.  Trust me, you don't have that...you must be born with that, it doesn't just happen to a person."  I felt embarrassed and let the matter drop.  I think that I have always had chiari but the syptoms are surfacing in my adulthood.  

[illjill29]

Thanks Selma!  I am prepared to make copies of the disc and begin sending them out to the specialist that you suggested.  I have been through such a roller coaster of emotions after being told that I may have stage 4 cancer then after extensive testing to be told..."nevermind, maybe it is a infection of the brain."  They have ruled out lupus, MS, toxoplasmosis and list a mile long of varous dieases.  I have had 3 MRIs, 2 CT scans, a mammogram, a TEE test on the heart and of course a lumbar puncture.  All of this has happened in one month.  All of the tests I have been through have ruled out every one of the dieases/conditions that they have suspected at one time or the other.  That is why the docs are now willing to say PTC because I have undeniably high innercranial pressure but they are trying to blame all of my other symptoms as a conversion disorder which is basically a mental issue of feigning either intentionally or without knowledge from the subconcious.  UGH!  
Please tell me more about a CINE MRI and how they differ from a regular MRI...Thanks for your help Selma!  You are a saint!  It feels good to come to a place where I feel heard and validated.  Isn't it said that some of us have struggled to find that in our Dr. office!?

[linnielou232]

I just want to wish you the best with your visit to the NS.  I keep trying to tell every one who is looking for a Dx to be persistant because you know your body and we are not crazy.  One thing about having Chairi there are so many doctor's that will dx people with every thing but Chairi.  I have found going through all the research and my experience that the big problem with having Chairi is there is a lot of doctor's out there that is not familiar with it.  So find a NS who specialize's in it.  I with you the best.  Your in our Chairian prayer's and alway's know you are not alone in your journey.  

[selmaS]

  Hi...u deff look like u have a chiari herniation...it looks corked up....

U would need a CINE MRI to see if ur herniation is causing a CSF obstruction, but it sure looks like it must be....not being a dr though...

Lesions on the brain can result from HA's...they do not always indicate MS, but it should be ruled out, as should lymes and lupus...since they all have similar symptoms.

Since u have the CD of ur MRI u can send it out to true chiari specialists for an opinion....and research the drs, and ask a few opinions....

  We have a list of drs here in the Health Pages....the list is not meant as a referral, but as a means to help u to get started on ur research.

  The links to the Health pages are at the bottom of this forum page.

    "selma"

[illjill29]

Also I would like to add that my profile picture is a perfect example of the MRI photo where I feel the herniation can be seen as mentioned above.