First Neurologist visit (long, sorry)

[Kiley860]

Hello everyone.  I have recently been diagnosed with a 4mm Chiari I malformation. The malformation was found during the second emergency room visit for nausea, headaches, and dizziness. I collapsed in the waiting room, and the headache/nauseau medication they were giving me wasn't touching the pain. At hour five, they ordered a CT Scan and then stated I had a possible Chiari I. They sent me home with instructions to have my PCP order a MRI w/contrast for a clearer look. Took a few months to get an appt with my PCP and an MRI, but while discussing the findings with my PCP, she stated that the 4mm herniation was very small and thought it may not be causing me issues. She referred me to a neurologist just in case.

Before my appointment, I spent some time with my husband to outline the past year and a half, and all the symptoms that i have been dealing with. These include lump in my throat for two months (two ENT specilaists couldn't find anything), nauseau and gagging coming and going for the last year, balance issues & unsteady gait, remembering familiar things (including my phone number and names of people who are very close to me), awful daily headaches that radiate from the back of my skull to finally rest behind my eyes, severe light and sound sensititvy, and fine motor coordination. Typing and writing has become more and more difficult at work. I have been having a lot of sick time due to the headaches, as when they hit I can't sit and stare at a computer monitor for eight hours without crying. There has also been a tingling in my right side face/neck that comes and goes. I'm probably forgetting a few things...but it's been a bad year and a half. My husband and I got married in Oct 2008 and it seems like I've been sick the whole time.

Yesterday was my first Neurologist visit. I was feeling a bit apprehensive after reading (I've been lurking for a bit) a few posts, unsure if I would get a neurologist who was familiar with Chiari. Sure enough, Neurologist stated the herniation was so small, he was surprised they even diagnosed it off the scans. He stated that he believes the symptoms I am experiencing are not from the Chiari, but that my headaches have "taken on a life of their own" and we need to break the cycle. I was put on Medrol for the next six days to break the headaches, and Elavil to keep the headaches in check (guess it takes three weeks to kick in). He didn't really discuss any other symptoms other than the headaches. My husband was excited, because the Neurologist stated I was not a candidate for surgery. I left, feeling like, again, the doctors are not listening to me. The Neurologist didn't even glance at the list that we had compiled, just placed it into my file apparently. I have an appointment to recheck in with him in three weeks.

I'm feeling pretty nervous about the last visit, and after reading about other peoples experiences, I'm really questioning whether I should try to get an appointment with a specialist. Husband is very supportive, but also thinks I am being a bit of a worrywart (is that really a word?), and wants to wait a while with this doctor to see where it goes. We live in CT, so I think our closest option would be the CI in NY.

Guess I would like the opinion of the fine folks here. Everyone seems to know so much more than I do! Should I stick with my gut and get a second opinion? I love my husband and he's been taking care of me all this time, yet he thinks i'm reading too much information off the web and getting myself worked up. All these doctor appointments, symptoms, and no answers. I am starting to wonder if my family and doctors just think I'm some hypochondriac.

Thank you for reading,
Kiley860

[flcrakar]

Understand completely!!!  Hate going to the doctors because they don't want to acknowledge the fact that many of us suffer alot of the same symptoms and constantly get told "I don't think the chiari is causing it".... BS if that was the case we wouldn't all be here complaining about the same things!!!! Maybe we should have the doctors read our posts.....I don't know about you guys, but I am seeing a pattern here!!!!!

Just to let you know...5mm herniantion as of 4/09, bad headaches, constant pressure, right side heaviness, stumble/trip over my own feet, drop small things, talking/remebering a challenge.....ect.....NOT Myself!

But everyone here is wonderful! Great support system.  Make your husband read the forum, maybe he will understand better that we all face these challenges, and him not ackowledging your worries does not help you! He needs to understand this....."YOUR BRAIN IS HANGING OUT OF YOUR SKULL!!!! IT IS CROWDED THERE AND FEELS LIKE A VISE ON YOUR HEAD ALL THE TIME!!!" Support is the best medicine your husband and family can give you. Hope all is well and pain free today.

[selmaS]

Hi...I must agree with Karen that a chiari malformation with a herniation less than 5 mm can still cause symptoms....and it is not just the blockage as it can be the overcrowding....

Everyone should be checked for syringomyelia, and tethered cord, hydrocephalus.....intercranial hypertension.......

Some of these related conditions can cause some of the symptoms.......many with chiari also have autoimmune disorders like Hashimoto's thyroiditis....which can cause swollowing issues......

If ur PCP will work with u ask to get all the testing of ur thoracic, lumbar spine and get a CINE MRI to check CSF flow.

It can be a long bumppy road, but that is why this forum is here!!

"selma"

[Karen5653]

Kiley,

WOW - your post sounded like I was reading my own story!.  My history is almost exactly like yours.  However, I have taken further steps and am still back at square one.
  
I was actually leaving work with headaches, dizziness, and nausea. I would have to go and get a pain shot for headaches that were in the back of my head radiating behind one eye until it felt like my eye would pop out). These headaches were new to me.  I had suffered with migraines a little, but not enough for concern – then, all of the sudden WHAM headaches almost every day.

Anyway, this led to an MRI - diagnosed as 5mm of tonsilar ectopia of the cerebral tonsils with platybasia etc.  This led to a neurosurgeon visit and he treated me exactly the same way yours treated you, kind of like he couldn’t believe I was even there.

I was then sent to a neurologist who told me the malformation was just "how the good Lord made me" and it was not causing my headaches.  He put me on anti-seizure meds for the headaches that were AWFUL and I could not take them and work.
  
In November of this last year (2008) I went to see Dr. Oro in Denver, Colorado.  Mainly because I needed a CINE MRI and they do not do those in this area.  Dr. Oro said that I do NOT have a blockage of my spinal fluid, this was good news for my husband and I.  He also said that he thought my headaches were NOT coming from the malformation - he diagnosed me with Occipital Neuralgia and put me on Lyrica - this medication only caused me to put on 13 pounds and the headaches are still killing me.  He is a wonderful doctor and I would recommend him to anyone - he is at this moment helping me change the medication he gave me and hopefully this will help.

Basically, I have resolved myself to pain meds and visits to my primary physician.  I never even carried Tylenol in my purse until all of this started.
  
I really didn't want to have surgery - but I wish these doctors would acknowledge that the malformation is causing problems even when the spinal fluid is not blocked.   I hope I did not depress you – I just thought you should not feel like you are alone – so many of us have been through exactly what you are going through now.

I would suggest that you follow up with the Chiari specialist in New York to be sure nothing is blocked.  I hope that you find a good specialist and pain relief soon.
God Bless,
Karen Soria