Living with Chiari- Neurosurgeon 1

We had our first meeting with a neurosurgeon on Tuesday the 23rd. I really liked him a lot. I was extremely comfortable with him from the very beginning of our meeting.

He told us that he sees 4 to 6 Chiari patients a week, and that 80% of them are able to manage their symptoms without surgery. But I fit into that 20% that need (or will need surgery). Since we just found all these problems, there is no way to know how my symptoms will progress. He said that there is no hurry to get surgery right away, but I would *probably* need it when in the next year.

For us there is a little more of a hurry. For those of you who didn’t know, we were trying to have another baby, but all this has ground that to a halt. So, the sooner we have surgery, the sooner we could start trying again. Granted, we do have to wait a year after surgery to try, but I’m good with that.

I digress. We felt very comfortable with his confidence about the procedure and his ability to perform it. He ordered another MRI (but of my lumbar spine), a CAT of my neck and X-rays of my neck. With the MRI, he’s checking for a tethered spinal cord, another complication of Chiari, that would cause some problems with surgery and change how it was done. The CAT Scan and X-rays are checking to see if there is any weakness in my neck. They will likely be removing a portion of my C1 vertebrae, and need to make sure they don’t have to do a Cranial Cervical fusion.

We are actually going to try to schedule the surgery for either January 11 or January 18th. The 11th would be the most ideal, but we’ll go with what we can get. The Dr. even said he could squeeze me in before Christmas if we wanted, but I don’t want to do that. Adam even thinks that my recovery would be better to wait. Less stress after Christmas. I think he’s right.

We are getting another appointment with another neurosurgeon for a second opinion. That was the result of neurosurgeon 1. We are moving forward!!

Living with Chiari-Update

This week has been an interesting week for us as far as Chiari is concerned. (That is the last thing we want are more interesting weeks). I had another MRI on Tuesday morning, and were told they wouldn’t get back to us for probably 2 business days. They scanned my neck and upper back. They were checking for syrinx, a fluid filled pocket along the spinal cord.

We got the results back on Tuesday evening. I have 2 (or one really long one, they aren’t sure) syrinx. The bigger in is 5.8mm wide and goes from my C4 vertebra to my T1 vertebra. Then the second (or the continuation of the first) is 3.8mm wide and goes from my T1 vertebra to my C6 vertebra.

Here’s a picture of a spine so you can kind of judge where they are.

What this means for me, well, I wish I could tell you. Some doctors say that I need the surgery since I have syrinx and they can cause a lot of problems that lead to paralysis. Others say that since I don’t have serious symptoms that are affecting my quality of life severely (I tend to disagree, but that’s just me) that I should watch my symptoms and wait until they are more serious before surgery.

We base our options on what we have read among the communities online, but we are getting appointments with several (okay 3 at this point) neurosurgeons in the area. Our first appointment is on December 2. ***UPDATE (about a half hour later) Our first appointment is now on 11/23, with a different doctor. Yeah for sooner!!*** We’ll let you know more then. 🙂

Living with Chiari

Well, I got back from the neurologist today with answers, but also with more questions. I have an Arnold-Chiari Malformation in my brain. It means that the tonsils of my cerebellum descend out of the hole at the bottom of my skull and into the cavity where my spinal cord resides. Thus crowding the spinal cord and creating pressure with leads to: headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea and some other more serve things that I won’t mention here since I don’t have them.

***UPDATE***
Here is a picture of my MRI. The Yellow line is where a normal brain doesn’t descend below. The blue line marks how far mine actually is below. In measuring a few times (since we are EXACTLY sure where the line goes), we get anywhere from 17mm to 20mm descent. That is quite a lot even in Chiari terms. The doctor even told us that he called us in because this is the biggest one he’s seen in a long time.

I have had this malformation my whole life. And knowing what I know now, I can look back and see the symptoms have always been there but I had no idea some of the things I dealt with weren’t normal. That is just how it always was for me, and there was no way to know otherwise.

While it is not life threatening in the least, it does pose a few problems for me. I will have to continue to deal with the symptoms for the rest of my life. Or we could have surgery to widen the hole at the base of my skull (among other things). The surgery doesn’t always work, and since migraines run in the family I still might get them, but maybe to a lesser extent.

We have been referred to a neurosurgeon, and are awaiting his call to schedule that appointment. At this point in time, I am scheduled for two more MRIs on Tuesday to check my spine for complicates that can occur from the Chiari.

Those are the results from my MRI today. We’ve got a lot of decisions to make, and would greatly appreciate all positive thoughts and prayers on our behalf.

An Update and 8 questions

Update…

I went back to the doctor this week for follow up blood tests and about my headaches that haven’t seemed to get better. So the good news, my ferritin levels are looking better. They should be between 100-120 but my are at 35 (which is better than the 12 we started with). The iron supplement I’ve been on has been helping. I can totally tell the days that I forget to take it.

My HDL (good cholesterol) is still too low. And the only way to fix it is to do (as the doctor puts it) mild exercise. Trying to get me to exercise is like pulling teeth. I just don’t like it. I think I need a workout buddy (who isn’t my loving and forgiving husband). I think I need someone who doesn’t necessarily exercise WITH me, but keep me accountable.

Another good step we are talking from my trip to the doctor yesterday is a trip to the neurologist for my headaches. I already have the appointment and everything. Now I just have to wait until Nov 3. I’m hoping we can figure out why I get headaches so often, but even if we don’t know exactly why we can know that nothing more serious is causing my headaches. So that’s good.

The Game

My cousin Krystal “tagged” me. Since I’m rarely thought of in this kind of game, I thought I’d play.

1. If your husband was out of the picture, what would you have named your child(ren)? (If you don’t have a child, then hypothetically.) Well, Spencer would have been Spencer. I’ve just always loved that name. 🙂
2. When do you usually go to bed? Lately, it’s been around midnight, but I prefer to go to bed around 11.
3. If you could visit anywhere in the world, where would it be? Europe (vague I know, but there is so much I want to see there).
4. If you could change one thing about yourself physically, what would it be? hmm, I’d be able to get this extra baby weight off and keep it that way!
5. If you could have one talent that you don’t already have, what would it be? I would love to be able to play the piano.  Yes, I took lessons for a couple years, but even more years of not practicing will take that talent clean away.
6. If you had your choice, where would you live? We are so happy here, but really it doesn’t matter to me where we live as long as we’re together.
7. What material thing is on the top of your “wish list?” Right now, it’s a new van.  So practical with little kid (kids, we will have more in the lifetime of that vehicle)
8. What is one of the dumbest things you have ever done? I think most of my roommates and parents will agree that is was dating a certain person who shall not be named (we do not speak his name) while in college.  That was a really dumb 3ish weeks.

Now, I’m supposed to make up 8 questions and tag some more people.  But I’m not feeling all that thoughtful at the moment.  Thanks for thinking of me Krystal!

Finally doing something

Both Adam and I have gotten sick and tired of me being sick and tired. So, we FINALLY did something about it.

A Little History:
For the last several months (I’d say since the beginning of the year or so), I’ve been getting sick to my stomach A LOT over weird little things; I’ve been getting headaches more frequently and have been exhausted after a normal day. There have been a few other things, but those are the major issues.

Wednesday:
We went to the doctor to see what’s going on. And he like the rest of the world we tell about this asks if I’m pregnant (which I’m NOT, so don’t ask). So, he decides to run a bunch of tests. And he covers just about every thing there is to cover in order to find a place to start. So, we have to go back the next day for the results.

Thursday:
We go back to the doctor. I was kind of nervous; I think I was afraid I was going to learn I had something serious (I don’t, but still) or that he had no idea what was wrong with me and all the “doing something” would stop there.

So while it wasn’t anything monumental, I learned that my good cholesterol is too low (apparently I wasn’t blessed with good genes that way) and that my Ferritin levels are CRAZY low. What is Ferritin you ask? Well, here:

Ferritin is a protein in the body that binds to iron; most of the iron stored in the body is bound to ferritin. Ferritin is found in the liver , spleen , skeletal muscles, and bone marrow. Only a small amount of ferritin is found in the blood. The amount of ferritin in the blood shows how much iron is stored in your body.

The Doctor said he likes to the see these levels at between 80 and 120 mg/L and mine are at 12. 🙂 No wonder I’ve been tired all the time. This might even explain some of my headaches.

I’ve been “ordered” to take an iron supplement and take a 30 to 40 minute walk 4 days a week. We’re going back in 6 weeks to see if these make a difference in how I’m feeling. Let’s hope.