Guess I'll try to get into TCI... first NS visit bombed

[SG2]

Had my first NS visit today and while I was expecting it to not be as easy as I hoped, I was still optimistic upon arrival.  That was quickly cast aside though as this NS dismissed everything in under 10 minutes.

"Your chiari isn't significant enough to cause issues, nor is it pointed (tonsils).  I'm concerned you may have pseudotumor cerebri, has anyone ever mentioned this to you or have you been tested for it?"  Me, "No, never heard of it."  He then says "Well if your neurologist hasn't said anything or ordered a LP, you probably don't have it.  Your left eye is also huge, bulging in fact.  Has anyone mentioned this to you either?"  Me again, "No, is this significant?  It's the eye I cannot see out of. (except colors)"  He didn't asnwer, only asked if I see an eye dr, I said yes...

He then did his neuro exam.  I didn't do well on balance and had a hard time finding my nose with eyes closed.  I had no reflexes in my achilles tendon near the ankle/heel and poor reflexes in my inner elbows/bicep.  He said he suspects I have a migraine and that those can sometimes cause "strange neurological phenomena" including my hearing loss (92 decibel loss?!), numb hands/feet,tingly face, memory issues, tremors, etc...

When asked to describe my headache I said, "Back of head, radiates up and behind my left eye.  Worse in mornings, with exercise, bending over, sneezing, etc..."  He asked if I was reciting what I've read on chiari...

I almost started crying in frustration.  

[actressmouse]

I am a patient at TCI....the fact that you got a call within 2 hours is, in my opinion, fairly significant.  You will love them...they are very caring and compassionate....and, best of all, they GET IT.

[SG2]

Thanks everyone..I was truly depressed yesterday after that visit.  I felt so... stupid.

I sent my paperwork to TCI today via fax and got a call w/in 2 hours.  I mailed my MRI out today and they said they will present it to the physicians on Monday and contact me after that.  

So - we'll see...

[Rylanesmom]

I agree ... See a true chiari specialist.  I do have pseudo and chiari (and more) and I know this because my NS is so thorough.  My NS was really concerned about pseudo as it can cause many symptoms too.  After chiari decompression I am no longer on pseudo meds.  I resumed after getting out of hospital and they gave me a headache ... Go figure ... I m hoping the pressure has gone down with csf flow restored.  Your chiari specialist will also send you for neurological opthomologist if pressure is suspected.  (your eye). It is so worth the flight to see an expert.

[Rahe28]

I am so sorry to hear that you had to go through this. It really is just so dishearttening to feel so shoved aside and looked at as though we are stupid. This is why I am so nervous about my appt. as well. It is not a specialist, rather the NS that medicaid insistst I see, and if he thinks I need a specialist, then I can see him. It is very frustrating considering how long we wait for appointments to see these dr's. I am praying that you will find the answers and relief that need and deserve, Hoping you find the DR that is right for you. GOod Luck ~

[selmaS]

  Yes, a good PCP over sees all the Drs we go to and is suppose to manage our overall health....

  

[SG2]

Thanks Selma..

I really don't have a decent PCP.  I've been using walk in offices and doc in a boxes mainly for when I have an acute illness and to get a zoloft refill.  

Guess I should start shopping for one.  

[selmaS]

  U need a chiari specialist that can look at all of u and find what all is going on.....

  A MRI of the lumbar spine, and thoracic  will also give indications of what else may be going on...in addition to the small herniation....

And PTC can cause u to have a herniation, so this may be the place to start...how is ur PCP...does he know what is going on and is he/she helpful in ordering testing to see what is going on...if so see if u can get tested for PTC and EDS....

[SG2]

No, nothing else besides MRI of brain, CT scan of temporal bones, and MRA for blood flow.  

I asked about scanning my back, he said we all have aches and pains..  

I'm half blind and now half deaf.  I'm dropping things because I can't feel them, I've given up activities I've enjoyed because I get too dizzy and weak to continue doing them, I'm confused in daily activities.  I can deal with the headaches.  I've dealt with them since I was in my early 20s.  I want my hearing back, I'm already down an eye.. I want feeling/strength back in my hands, I want to be able to stand up and walk without feeling like I'm going to faint or like the room just spun out from under me, and I want a decent nights sleep... What is wrong with me?

Where do I go from here?  

[selmaS]

  Well I am sure there r many more specialists out there not on our list, as we only add names as members ask us to after they were successfully treated by the dr.

  Back to this Dr and ur issues, u may have migraines along with chiari symptoms....and there r related issues that u may have as well.

Did u have the MRI of the thoracic and lumbar spine?...rule out Ehlers-danlos? Retorflexed odontoid? sleep apnea, PTC...????

Minimal herniations r not the reason to stop looking, but it does mean it may not be the herniation ...and they should look to related issues.

[SG2]

No..well he's not on the list of specialists.  His website says he has experience with chiari malformations though, which is why I was hopeful.  

He only said my herniation is minimal, which I kind of already knew in doing my own comparisons.  

I just want to feel better. I don't have a migraine.  Or maybe I do and I'm just extremely stupid/naive/over sensitive and/or insane on top of it.

[selmaS]

  Was this Dr a chiari specialist?

Many with chiari may have pseudotumor cerebri PTC....and it is something we should all be checked for...and some even develop it post op....

But with ur eye issues I would have said this is a good possibility.....and could explain the chiari symptoms.

  Keep pushing until u find a Dr that is willing and able to help u.