New Hope...

Looks like I'm still getting hits so I had better update. The MRI's on my kids came back normal, which doesn't surprise me because mine always did as well. The important part was getting the films for myself. I looked at them and my youngest looks like she has plenty of room but my oldest looks crowded so I will be watching her. Quite frankly I am adept at measuring for myself but the MRI is of such poor quality it is hard to identify the two bones I need as reference points to draw the line and see what's hanging below.

I still have headaches they come in waves. I just got over a two week headache and am feeling pretty good for the past 5 days. My biggest complaints are headache and fatigue (along with the rapid heart rate problem that comes and goes). If I could get rid of these issues I would be right as rain. Anyway, I was sent to a spine doc at CC to see if Tarlov cyst was the prob. Nope. So I researched on my own (this is how I solve all of my own medical problems) and I came across Dysautonomia. I think I found my needle. I read that POTS is heavily associated with Chiari. So, I learned how to tell if you have the condition and I tested myself. It fits!! There is no cure but they can help with the symptoms by slowing your heart rate and stabilizing your blood pressure. The current theory is that dysautonomia is caused by brain stem compression. HELLOOOO!! I am getting a Tilt Table Test Dec. 2. I am a little concerned that I will be going through a good span and nothing will happen. Isn't that awful?!? I just want it to fully represent what I go through more days than not. I did wear an event monitor for a week. It was supposed to be for a month but I am very allergic to sticky tape, even their hypoallergenic ones. Will let y'all know what I find out.

Good Health and Happy Holidays to All!

MRI's for the kids...

and they looked pretty normal to me (I am an expert after all! :-). I received a card in the mail for my eldest saying it was read as normal, still waiting on the youngest daughter's results. Both kids sat through the test fine. My NS said he would look at the films if I wanted him to, which I probably do. I was worried about them because the youngest has had constant stomach aches and headaches for years. Doctor's said it was acid reflux and put her on prevacid which did nothing. Finally I figured out that maybe she didn't have enough good bacteria in her digestive track thanks to years of antibiotics from constant infections as a baby. I bought some probiotics at the health food store and it works pretty well. Still wanted to check it out though since I read that Chiari presents in children as headaches and stomach aches. My eldest has horrible headaches and has had these weird passing out attacks. Not sure what they are since I have never witnessed them. I don't know if they are drop attacks or what since I have never had these. Anyway, the Neurologist (whom I really like) said that if the MRI's turned out OK he may consider testing her for seizures. Weird. A couple of Neurologists wanted to test me for seizures but I never went. The pediatric Neuro also gave her migraine meds to try for her headaches. We will see....

Monthly Update

So I went to see Di last Wednesday. I had my 3 month MRI done right before the appointment. Di showed my husband and I how beautiful the flow is and said it couldn't be more perfect. You could actually see all this room behind the cerebellum full of wonderful beautiful spinal fluid. Neat. Then we went into the exam room and he answered all our questions. He was running behind but didn't rush us at all. Did I mention how much I love this man?! With the flow now flowing I asked why my left leg was tingly and why my heart is starting its racing crap again. (By the way, those are the only symptoms left with the exception of an occasional headache. WooHoo!!) He said he did not know but would help me. He wanted me to resend my lumbar MRIs (said he never got them in the first place?!?) and he would check for Tethered Cord, but he didn't think he would find it. Then I asked him if maybe it was the Tarlov Cyst noted on my lumbar MRI radiology report. He said that would definitely be a probability for my leg and he would look at its location on the films once I send them. I sent them on Friday and he said he would let me know within one week of receiving them. So, I wait. At least there is hope for my leg!! It's freakin' driving me crazy!

Anyway, while I was waiting on Di, I was standing in the hall talking to another of his patients that I have been in contact with since before my surgery. (We planned the rendezvous. She is 3 months out too.) It was the first time we had met face to face. Her appointment was before mine, so she and her hubby waited for us and we all went to lunch in one of the hundred or so cafeterias at CC. While we were there, we met up with another of Di's "victims" who was one month out. Her hubby was with her as well, so you can imagine the 6 of us yackin' it up about all the negligent doctors and ignorant nurses we have run across along the way, all the while surrounded by the very wolves we were insulting.

Two of us had a horrible hospital stay at CC. Thank the stars that I only had to stay one night! The other poor girl was there for five days! We both had trouble getting our pain meds or pretty much any attention at all from our assigned nurses. I honestly do not know whether they were overworked or just crappy at their job. I don't care. I'm the one in the hospital bed! I'm the one with a hole in my head! I keep meaning to write CC about my stay, just keep forgetting. Shame on me. Another lady from Florida that we have been in contact with through WACMA also flew in that afternoon for her first meeting with Di but hubby and I had to get back to the kiddies so we weren't able to meet her.

Funny side note on Di: The man always pulls out a brown paper towel from the dispenser, then asks if he can borrow a pen and draws you a pic of whatever it is you are there for. We compared notes and laughed when we realized that, here's this celebrated (more than likely well-to-do) Neurosurgeon who doesn't carry around paper (or even leave a pad in each room) or own a pen?!? We all decided that during our next check up with Di, we would each buy him a tablet (something cutesy like High School Musical) and a pack of Bic pens as a thank-you/gag gift. Maybe you have to know him for that to be funny but I wouldn't have it any other way. He is just a sweetheart.

I'll blog again when I know something new. Hope your pain free!