Chiari Online Support Group

Anxiously awaiting appt with neurologist

Hello everyone,

I’m new to the site. I found out about Chiari Malformation by accident. However, everything makes sense now. Here’s a brief overview of my story

When I lived in Texas in 2009 I was having a transesophageal echocardiogram for another issue when it was discovered I had CM. While under general anesthesia the Dr asked if I had headaches. Assuming she was talking about the current procedure, I said no.

In 2012 my husband and I moved to Arizona and the very week we were set to leave I was rear ended and was transported to the hospital. Shortly after this is when all of my issues began. From the headaches, stiff neck, memory loss, difficulty concentration and finding the right words for the most basic conversations. At first I put it off as the stress of the move and getting acclimated to my new location or side effects from the accident. Well things continued to get worse, especially the debilitating headaches. The headaches became a regular occurrence and continued to increase in intensity. Next came the extreme back pain, stiffness in my right forearm and challenges with holding utensils in my right hand.

I made appointments with my local physician and explained about my headaches and back pain. Well to no surprise they stated I seemed fine and that I could be dehydrated.

Present day: things finally came to a head where my symptoms were not getting any better, in fact worse. I started reading up on my symptoms and saw MS and really began to get fearful. I made another appointment (this past July) with my physician again. While waiting for the appointment something told me to look at my online medical treatments/history (military site). So as I was going back by date I ran across the procedure from 2009 for a completely different issue and noticed a statement that said “appearance of chiari malformation”. This is when I began my research on CM by reading any and everything I came across. At my appointment I mentioned this to my physician who also had access to the same information. I immediately requested a referral to a neurologist. So here I am, waiting for the appointment that isn’t till Oct 12th.

One isolated event that occurred really makes me wonder if the accident truly caused my CM to come to the surface: I had an appointment with my hairdresser which I’ve done for years, but out of nowhere when it came time to lay my head in the sink I almost passed out from the pain. It was so bad that I had to keep my head elevated in order for the pain to stop. I have not gone back since then (Dec 2015). Reading some of the stories on this site I found someone else having the same issues, however sounds like post op.

I apologize for the length, I just wanted to give an overview. I do however have a question for the group: what type of questions should I have prepared for my appointment? Is there anything in particular I should say to make sure they request the most accurate exams? I’ve read about the Cine MRI, should I ask for that as well?

Thank you in advance!

SL

Hi and welcome you’ve come to the right place for support on this debilitating condition. From the moderators through to those new to the site I’m so grateful for their knowledge and words of encouragement and understanding, they have got me through some tough times.

I empathise with your symptoms and I’m glad you’re at last on the right track to some hopeful relief. It is my understanding and experience that Neurologists approach Chiari with a non surgical approach (they are not able to operate), often with medications and in my case high doses of medication which had more side effects than relief. Although there’s no cure for Chiari, relief has been achieved by many from having surgery (a decompression) which basically gives more room for the brain, hence less pressure. This is performed by a Neurosurgeon and is the path I am currently taking. Whilst I’m in no way dismissing the place of Neurologists I have read many stories of Chiarians who have spent large amounts of money, time and energy under a neurologist for little gain. I know I did and in hindsight I wish I’d taken on board earlier the suggestions of fellow Chiarians and gone to a neurosurgeon. Is there a reason why you’re going to a NL rather than a NS or is that who your dr referred you to?

Regardless of how you proceed with treatment they waiting is really hard and I encourage you to keep ready everything you can get your hands on. Knowledge is power and we need all the strength we can muster on the Chiari highway. All the best

Thanks Sallymagint for your reply!

Unfortunately this is the first step with my medical provider. I really wanted to go to the NS first but was told I must see NL. I am hoping to another referral once I have my appointment which has taken a VERY long time to get into his office by the way. I fear I will have just as long if/when I can see a NS. My next concern is finding someone not only knowledgeable but who has experience with CM patients. I just don’t want any NS operating (if that is the route I must take). So many questions yet no answers until I see the NL then NS. More to follow. My appointment isn’t till Oct 12th. It will be 6 weeks from the time I made the appointment! The other NL I was referred to won’t even take patients until he’s seen their medical records AND MRI. After which he will review and decide if I am lucky to get in to see him. This is crazy…

Hi, I crossed the same bridges and unfortunately it seems to be the way with NS and NL where they receive your referral and decide whether they will take you on. When this happened to me and a couple of NS wouldn’t take me as a patient I remember thinking ‘they don’t believe me’, ‘they don’t understand how bad this is’ it was a horrible feeling. I then found out that there are many areas that NS specialise in. There are some that know about Chiari, some that treat Chiari and some that specialise in Chiari. As tough as it was when some wouldn’t take me on I tried to look at it as maybe they don’t feel they’re experienced enough to treat your particular diagnoses as opposed to taking it personally, maybe they’re doing me a favour by not having me wait 3 mths for a app and then not be able to help me. I certainly didn’t want to waste anyone’s time and I didn’t want anyone wasting my time so I kept searching.
I found a great NS and I’m hopefully heading in the right direction now. I understand the frustration and worry you have about the wait and the fear of something going wrong before that appointment and it being all too late. It’s a hard road but you will get through it, you have no option. I’m
Hopeful