I MUST BE CRAZY.

[SG2]

I think I'm in denial. I think I am crazy.  I'm STILL in the hospital.  They have run every test they can.  They have found nothing that explains my hearing loss and vision loss.  There is just one more MRI to do, of the orbits (eyes).  However, the docs here do not think I have chiari.  They are calling me idiopathic and next step is psych workup.  They think I'm depressed and that depression can sometimes cause neurological symptoms?

I know I mentioned to you all I have an appt with TCI next Friday.  But at this point I am feeling like I will go there to see Dr. B and he will also say, nope you do not have chiari.  You are idiopathic and/or psychotic.  Stop wasting everyone's time.  

I"m on iv steroids, still. 1000 mg of solumedrol.  I will be discharged tomorrow night with an outpt infusion done on friday for the last dose.  It has helped, it's returned 20 decibels to the right ear.  The left ear is still dead though.  

They can't figure out why left side colder, why bp so low, why I'm dizzy, why I can't hear out of left, see out of left, why I get electrical shocks down my spine, why I tingle, why my head won't stop hurting... nothing shows them what's wrong.  So it's obvious I'm crazy. But can 'crazy' cause physical symptoms such as hearing/vision loss?

[Shannon12012]

o love you are NOT CRAZY… The devil is LIE! You know your body, no one but God  knows it better. Keep you apt at TCI and keep trusting YOU!  Rahe is right doctors are simply practicing and most of them have no idea how to listen to their patients. I am so thankful for this forum I wish I could strap my former PCP and NL in a chair and force them to read how so many are affected by CM and the negligent care doctors are giving them. This is sad on so many levels.

If one more doctor suggest I am “mental” I will not be responsible for beating them over the head with my good hand IJK..maybe… :/  We have to take this journey together I know I’ve only been on here a few months but it’s made a world of difference.  SG2 I ‘m praying for you luv 

[irislita]

I join the other members.never ever let urself be told by anyone u r crazy.they guided me in the same direction...and what they do is screw u up until u r screwed up!!! U get ur answers i am sure...and we are here for anything

[actressmouse]

Listen to the ENT (sounds like that doc is the lone voice in the "wilderness") and go to TCI.  

I went last August and I, too, have hearing loss that EVERYONE said cannot possibly be related to Chiari.  Well, Dr. B shared a scholarly article by Sperling et. al. done in the 1990s regarding the link between chiari and hearing loss.  I encourage your docs to "look it up".  

Get thee to TCI.

[onedaysoon2010]

I agree with everyone here. You are NOT crazy and don't allow anyone to make you believe otherwise!!!! You go and see Dr. B at TCI and find out what's up with you. Although my herniation is small (1-2mm according to the MRI report) and my drs think that I am more in need of a psychiatrist than anything, Dr. Heffez (a Chiari specialist in WI) saw from the SAME MRI that I do have Chiari. So with the help of the great people here, and my friends at work and in life, I know that I can't allow the drs who think I'm crazy win. And I am on my own magical journey to find a dr who accepts my insurance and can help me (in whatever way will benefit me the most) because they know and understand Chiari.

I know what is going on with my body and you know what is going on with yours. Please keep that in mind always!! You keep on fighting this until you see Dr. B. He will know what is going on with you.

[linnielou232]

I am so sorry to hear of your difficult journey and I feel your pain.  It brings back a lot of memories for me almost 3 yrs ago.  I had the same experience of feeling I was loosing my mind and Dr.s would not listen and sent me out of their office in such flustration.  I had a dear friend that gave me advice and this forum also and I'm passing it down to you.  "Be persistant".  You know your body and you know that something isn't right.  My herination was only at 6.5, but after being persistant I found a NS that listened and did my surgery.  I wasn't living life anymore because of the serverity of the pain.  When I had the surgery the NS told my family he knows why I was in so much pain.  With a Cyst and the blockage which is now better by the grace of my dear NS taking the time to listen.  Please keep your appt and keep being persistant and you will find the answers you are looking for.  I know the difficult journey your are on now, but you will find answers.  If your crazy we are all crazy LOL.....Welcome to the Chairian runaround.  Wish you the best my friend.
Linda :)

[ChiariWolf]

Sue, mega doses of steriods pre-op left me with diabetes. It sky rockets your blood sugar.

Sorry, I've not been reading this thread. Just noticed it. Hearing loss, yes, definatley. AT times left ear is deaf but it always comes back. I was also told it wasn't CM related. Now I do have a posterior fossa arachnoid cyst that was drained at the same time as my PFD so this could be from either. But post op my hearing is still diminished [according to my wife :-)] it is however much better than pre-op. I do have a constant ring in both ears though. Left ear, the one that would go deaf at times has a louder ring. So can I prove it, obviously no. I do believe it's related though.

YOU are not stupid! No, you are in need of 'real' Doctors. NOT quacks. The emotional damage that they can do to you will hang with you for a time. So the sooner you get out of there the better. Go to TCI with you chin up high. See what the good Dr B has to say.

JMOs
CW

[Rylanesmom]

I was told I was stressed and depressed too...non chiari specialists simply don't know...hang in there

[billyz123]

you clearly have chiari and I have left little comments on your MRI photos. You are not crazy <3

[selmaS]

  Those anger issues, quick to anger is also due in part to brain stem compression.....it affects all emotions....so I understand wanting to beat up that dang curtain for tripping u....lol...

Steroids can be effective, but short lived as u can not be on them long term, so when they wear off so do the benefits.

TCI is where u should put ur focus and see what they can offer....

[SG2]

Thank you, you guys are awesome.

I've done all my comparion searches on my mri pics.  My herniation is small, I may be a zero, may be a 1 - 3, hard to say for sure.  But I have been told I'm crowded and I think I "look" crowded.  I wish someone would do a CINE study.  Maybe Dr. B will.  

I guess TCI saw enough on my films and records to warrant me to come talk to them, at least.  I just feel so frustrated.  

The mega doses of steroids has actually helped my HA, it's the best it's felt since december and that's after being on a handful of diff pain and migraine meds.  However, 1000 mg of steroids is not a realistic treatment option long term.  It is interesting though.  I don't like the side effects, but I'll take them for now if hearing is coming back little bit in the right ear and HA lets up a little:  (so bloated, I look pregnant.  My mouth tastes like metal, My blood sugar is that of a diabetic and I'm not one, i could probably lift a car with my pinky finger, and I am finding myself pissed off at things like the curtain that seems to want to trip me on purpose).

[selmaS]

  U r not by ne means stupid, IMHO they r.... ignore their remarks and go to TCI and see what they can find for u.....

  They r grasping at dx's.....ugh

[Rahe28]

Well, if they are not specialist or well qualified to deal with Chiari then they would most likely not recognize it or Chiari 0 which could always be a possibility and if it turns out that its not, and a speciaist tells you this....then...start looking for  answers with other DRs. Much love sweetie

[SG2]

No, none of them are.  And the one who is encouraging me to go to TCI is really my best doctor (ent) in that he is the one trying to save my hearing but he doesn't feel it's chiari related.  However, he's willing to be open to the possibility.  

The other docs are just my NL who increased my zoloft and said i'm upset cuz my dad died in Jan, and other residents.

Yes, I am upset my Dad died in January.  lol.  But...um.. I lost my hearing in December.  Oh well.  I feel so stupid.

[Rahe28]

Just because a  groupof Drs cant find what is wrong, doest mean that you are crazy. YOu would not have lowbp,hearing loss, and other obvious symptoms that can be proven if you were cray. Remember that DRs PRACTICE medicine, they are not perfect and dont kow it  all. They are not Chiari specialist and  do not know enough to judge that. Keep  your appt at TCI and see DR B. I had this same problem....they ran everytest they could and when all they could find was the chiari they told me and my hubby that I was making it all up (I lost two years of memory with some sort of seizure) and told me that the chiari was no big deal. what they failed to mention was that I was only at 20% csf flow with a 12 mm herniation. They also had me speak to an abuse consslor because they  thought that my DH was beating me. I was bartending and had bruises on my hips and legs from running into the coolers at work. So, dont take this to heart. They are not specialist and are frustrated because they cant pinpoint it because what they are taught about Chiari is outdated and pretty much flat out wrong. I am so sorry you are going through this. If I  turn my head to the left I loose my vision from the occipital neuralgia and chiari ....and this is coming from a qualiofied NS. Just wanted to you to know that you are NOT crazy and dont let them make you believe this. you are in my prayers sweetie.If you need to talk PM me...I havet slept in days so I will be  up all night, and if I am  up I will answer your message.

[selmaS]

  I was made to feel like u do right now, but my question to u, those making u feel this way...r they chiari specialists?

  What r they looking for?.....r they humoring u or really trying to find something....