Has anyone experienced disorientation as a symptom...

[dpulum]

I'm 42 and have a 20mm herniation, I'm trying to get the right docs lined up to deal with it.  I'm seeing a new neurologist on Tuesday.  I am also dealing with problems with a mass in my sinuses that I noticed in the pics of my MRI when I went to see the stinky neurosurgeon who told me to come back next year (I won't be going back).  Anywho, my symptoms include mostly visual problems, stiff neck, pressure in my head, dizziness, etc., but lately I'm feeling kind of disoriented, it seems to be related to my visual issues.  I think I must have vertigo, I feel like I'm moving when I'm not, fall over sometimes, and stuff like that, but I've gotten lost a couple of times lately in familiar places, I knew where I was, but I couldn't place myself in context to get where I needed to go while driving, so I backtracked and went a different way and got there, I've also noticed that it requires a lot more of my attention to drive lately so that I know where I am, I don't know how else to describe this...has anyone experienced this before?  

Tina

[dpulum]

Thanks Shane, I saw a new neurologist yesterday who was truly excellent.  She's referring me to Mayo clinic since I have a very large mass in my sinus cavity that is complicating things.  She thinks that may be causing the vestibular problems, so hopefully they can sort things out there.  :)

[Shane99]

I also have a 20mm herniation and have stopped driving completely. I have the dizziness/vertogo/confusion etc too.

Be very careful, a moments vertigo and someone could be seriously injured or killed. I don't consider it worth the risk.

[dpulum]

Thanks you all.  I actually am kind of a adverse to doctors, I never go, never really consider myself sick, so I've pretty much ignored the visual problems and continual sinus stuff for a really long time.  Dawn, the visual stuff started when I was in high school and my doc at the time diagnosed with me hypoglycemia.  I see lines, flashing bright lights, floaty stuff, and it usually comes in kind of "incidents" not all of the time.  My neurologist thought this was ocular migraines until the herniation showed up on my MRI, then she pretty much tossed that dx and attributed it all to the Chiari, but I think it may be the migraines, it definitely seems to happen more when I am stressed, in the heat, or tired, I used to black out with it, but that hasn't happened in years, I always believed it was related to my blood sugar until I started having periods of blindness for 5-25 minutes or so in December.  I'm taking Topamax for that now and I've only had 2 incidents since I started on the meds in March, I still have blurry vision, serious over sensivity to lights and my visual acuity varies from day to day, but the blindness stuff has stopped.

The neurologist that I'm seeing is not an expert in Chiari's but is a specialist in essentially teasing out symptoms of various disorders.  I have a good friend that is a pediatric neurologist that set up the appointment and is attending it with me, it's more for informational purposes than anything and to discuss referrals to doctors.  I contacted a well-known Chiari's Neurosurgeon in Washington who did my sister & nephews surgeries and asked him for a referral to another Chiari's specialist, so he sent me to a friend of his, but his friend is not a specialist in Chiari's, so I haven't scheduled the appointment, I don't want to waste my time seeing someone else who can't help me.

My ENT did order and CAT scan, ENG and another fancy test to check on my motion problems for me, so he seems to be doing a good job and is getting some of the tests done that I'll need for the neuro people anyway.

Anywho, thank you all for being so kind and helpful, this is all still really new to me and I'm trying to adjust and get it figured out. :)

Tina

[selmaS]

HI ...I also had this problem and have not been driving for over a yr now......I was afraid I'd have an accident.

I also had a drop attack and was told after that not to drive bcuz we didn't know when or if I was going to have another attack....which is like passing out, but u come to mid fall and can not react.

Hopefully ur NL knows about chiari and chiari related conditions and can get u the help u need ....and u also need a good ENT to deal with ur sinus problem, which is adding to ur issues.

I agree with Dawn in that ur herniation is considered a large one and that u need to know if u have a syrinx,tethered cord, intercranial hypertension...ect....

WE r here for support, so do feel free to ask here in the forum or use the private message option..PM....to ask questions.

"selma"

[Dawn1214]

Wow you just described a lot of my symptoms....

There are 3 things mine could be... Allergies with post nasal drip, Peri menopause, or Anxiety... LOL... I have a small chiari malformation and have been tested for everything. My PCP insists I have anxiety, my OBGYN thinks it could be meno symptoms ( I am 46) and I also have sinus problems but mostly on my right sinus.

I have been researching my symptoms and all three of these mimic them. Can you tell me what visual symptoms you have? Have you had any testing for your chiari? 20mm is pretty large and you should definitly have more testing. Is the neuro you are seeing on Tuesday familiar with chiari? Please keep us updated and I wish you much luck.

Dawn