Long overdue update

I saw my neurosurgeon this past Thursday and honestly, I wasn’t all that impressed with him. First of all, the place where I had both MRI’s (of the brain and then the second one of the cervical spine) only sent the MRI of the brain so he couldn’t even address the chiari malformation diagnosis. He basically said that he was going to need to look at the MRI of the cervical spine and have me get a third MRI of the thoracic spine so that he could make sure I didn’t have a cyst on my spinal cord which I guess can happen with chiari malformation. I’m not excited about having a third MRI considering I’m not made of money and Greg suggested going to see another neurosurgeon for a second opinion which would be a heck of a lot cheaper than a third MRI. I’m considering it, especially since this doctor just didn’t see all that great…he rushed me through the appointment and seemed bothered by the few questions I had.

I also saw my gynecologist Wednesday. We are still on the hunt for the perfect birth control product. When I developed this last migraine, one of the first things I did was take out the nuvaring I had been using. I was in my second month with it and was desperate for anything to stop the migraine. Since being diagnosed with chiari malformation, I asked my gyno whether it was the nuvaring at all and she couldn’t say one way or the other, but thought it was time for us to just discuss an IUD. She has recommended Mirena because it doesn’t use any hormones and she thinks it will help the most with preventing the uterine lining from developing (which is the main reason I need to get on something to regulate my cycle). With PCOS, you can go months without a period which means the endometrial lining just continues to build up each month because it isn’t sloughed off. This can increase your chances for uterine cancer which is why most women with PCOS need help getting regulated. Anyway, we have to see what my insurance is going to pay because apparently the device costs $800.00. I’m double insured so hopefully one will pay what the other doesn’t, but I still may have a deductible to meet. Apparently you can only have it installed while you are on your period which is pretty disgusting…I don’t exactly relish the thought of having anyone fiddling with my vajayjay while I’m menstruating but I guess they are used to it.

Speaking of being double insured…I won’t be that way for much longer. I am actively trying to get the paperwork to make my divorce final. Apparently, we can go down to the law library, pay $12.00 for the paperwork, fill it out, run around making copies, getting stuff notarized and with another $299.00 we can make it official. This is something that has been on my “to do” list since the beginning of the year. Yes, my venture into the dating world kind of got the ball rolling in my head, but we all know this divorce is WAY past due. I haven’t been married in my head or my heart since Erik and I formally split back in 2007. Even though we’ve been living together, it is nothing like a married couple only sometimes, the lines still get blurred (mostly when it comes to finances). Formalizing the divorce isn’t going to really change any of that. We still plan on living together for the time being although more and more, I’m really getting to a place where I kind of want to be on my own. Then I feel selfish for feeling that way because I know how hard it will be on Tanner if we physically split the household. As long as Erik and I can get along, I just can’t see splitting the household up to suit my needs. I realize some might feel differently, but I have to do what feels right in my heart and for now, this is the right thing for Tanner and he is my number one priority.

Migraines and my recent Diagnosis

Note: No, that isn't my brain. Mine is MUCH bigger than that ;)

Ok, so a few weeks ago I developed what I thought was a migraine. I used to have horrible migraines and every once in a while would get a baby migraine (as I called it) which I could usually knock out pretty quickly with medication. Several years ago, my migraines were so bad I thought I was going to have to go on disability because I would get them two to three times a week which meant pretty much my entire week was shot.

In addition to the headaches, I would get what I called “migraine fog.” This was how I described the confusion and inability to attend to anything or concentrate on anything. I would experience this preceding and following a migraine so you can imagine when you are having 2-3 a week it pretty much becomes an a problem that takes over every aspect of your life. I really feel the migraines contributed to the slippery slope that got me to 465 lbs because it really cut back on my daily activity level and made exercising almost impossible as getting my heart rate up could trigger another migraine.

The migraine I developed a few weeks ago lasted over a week. It got so bad at one point, I was having phantom smells, vision problems, incredible pain and nausea and vomiting. I went to the hospital and spent almost an entire day curled up in one of my doctor’s examination rooms while they tried to determine what was going on with me. This was absolutely the worst migraine I had ever experienced.

The doctor sent me for an MRI of the brain which came back normal, but they noted some possible narrowing of the foramen magnum which prompted them to order a follow up MRI of my cervical spine. Here are the results of that MRI in a nutshell:

1. Note findings consistent with Chiari I Malformation with inferior deviation of the cerebellar tonsils (which I think means they may be herniating through the hole at the base of the skull).
2. They also noted degenerative disc disease throughout the cervical spine (the neck)with flattening of the thecal sac (this is a description of the situation which occurs when a herniated (slipped or prolapsed) disc has extended so far into the spinal canal that it is pushing on the thecal sac or covering of the spinal cord)
3. Bilateral neuroforaminal narrowing again, I think this is possibly referring to narrowing of the opening in the spinal vertebra the spinal cord passes through due to some of the degenerative disc disease.
4. Partially empty sella: from what I can gather from my research on the interwebs, the sella is where you find the pituitary gland. When it presents as "partially empty" this could be normal or due to abnormal pituitary function which would make sense considering I've also been diagnosed with PCOS and abnormal levels of all the pituitary hormones (FSH, LH, ACTH, etc) contribute to this syndrome.

Based on these findings, my primary doc has referred me to a neurosurgeon to get his opinion on how bad it is and how it should be treated. Honestly, I think it sounds worse than it actually is. Yes, this can be a serious condition, but it sounds like I may have a mild form of it. I really expect the surgeon to say that all we really need to do at this point is manage the symptoms. I would be very surprised if he recommended surgery, but I guess that is a possibility.

Honestly, it is such a relief to FINALLY have some answers about the years of headaches I’ve had to cope with. It may even explain to some extent why I’m so uncoordinated and accident prone. Perhaps now that we know the cause, we can do more to prevent the migraines from happening. I’ve had a couple days where I feel almost completely headache free so some of the medication must be helping.

I see the neurosurgeon this Thursday and I will update you guys on what he says. Thanks again for the support xx