This is what happens when your brain is literally too big for your skull!!
Here it is, Tuesday October 20th, 2015.....and I now know that I have two major surgeries coming in the future.
Sunday was my amazing husband’s birthday, and instead of being able to celebrate it at home with one another like he would have preferred, we had to spend the morning driving to Peoria Illinois so that I could see a Neurosurgeon at the Illinois Neurological Institute. Thankfully I've been blessed with a saint of a husband, who simply said it was still a good birthday since we were at least with one another. Seriously? A SAINT I tell you. His actions yesterday just further prove his saintliness. You'll understand shortly.
As a few of you know, I've been seeing a lot of doctors lately, and more specifically neurologists, and finally a neurosurgeon yesterday. But I'll get to that shortly.
I had surgery August 5th and was finally diagnosed with Adenomyosis at my post op appointment on August 19th. Unfortunately my doctor didn’t have a lot of information regarding this condition and was going to send me to a reproductive endocrinologist in Springfield. So, we turned to the internet to research this as much as possible, talked to other people that suffered from it, and looked into every possible cure and/or treatment for this disease. Unfortunately what we found is that really the ONLY cure for this condition is a total hysterectomy. We wanted to be sure that there were no other options before we finally gave in and scheduled this surgery however. After much research, and deliberation we have finally realized that if by some miracle I did get pregnant through In Vitro Fertilization, that the chances of successfully carrying a child were slim to none. Women with Adenomyosis have MUCH higher miscarriage rates than women without the condition, as much as double the risk of pregnancy loss; they also have an increased risk of premature labor, and abruption placenta (a condition where the placenta detaches from uterine wall during pregnancy). The other major issue can be Uterine Rupture during pregnancy, it happens in over 90% of women with Adenomyosis. Uterine rupture is a potentially catastrophic event during childbirth by which the integrity of the myometrial wall is breached. In an incomplete rupture the peritoneum is still intact. With a complete rupture the contents of the uterus may spill into the peritoneal cavity or the broad ligament. Those things can happen even IF you somehow manage to get pregnant.
What we learned was that IVF can cost upwards of $20,000 for ONE treatment. The chances of getting pregnant the first time are less than 20% and the chances of getting pregnant with IVF at all are only 22.4%. To even get pregnant at all usually takes at least four tries, so that’s a whopping $80,000 to TRY and get pregnant with no guarantees. Then you add on the emotional and mental toll that you’ll go through with no promises of a child, and we’ve decided that at least for us, a hysterectomy is the way to go, followed by adoption at some point soon. Yes, adoption. Shawn and I are absolutely sure that we could love a child as our own, even without genetics. We’ll love any and all children that we are lucky enough to be blessed to call our own, and we honestly cannot wait to be parents.
With that being said, we have scheduled my hysterectomy for November 30th, that way we are through Thanksgiving, passed both of our birthdays, and enough time before Christmas to recover and feel mostly better at least. Before anyone asks, no, we do not know what type of hysterectomy I’ll be undergoing at this time, we haven’t yet had our pre op appointment. As soon as we have we’ll let the appropriate people know etc. I don’t really have a lot more to say concerning this at this point, mainly because that’s all we know for now.
Now, back to the appointment at the Illinois Neurological Institute. Sunday was my amazing husband’s birthday, and instead of being able to stay at home and celebrate together like we would have liked and he would have preferred, we spent a good part of the day driving to Peoria for this very important appointment. At least we did get to enjoy our time with another going to a few shops we both enjoy, and having a lovely dinner together. We then stayed the night at a hotel, in a room that we actually had for free, since our reservation had been so messed up on our wedding day. We arrived the next morning at the hospital at ten am, for my 11 am appointment, thinking we’d be there plenty early for this appointment and help to expedite the process. Boy oh boy were we wrong. We arrived at the address that was on the letterhead of the office that had been sending us mail, only to find out that we were at the wrong address all together. Apparently this facility was undergoing an overhaul and they were presently spread over four facilities being moved into one larger facility, which is where we had gone. So, we then headed over to the correct address making it to the appointment with five minutes to spare. Literally five freaking minutes. There went being early. This was the first problem of many throughout the day.
Second problem, we get into the room with the nurse who was great, and then the “doctor” came in. She was a doctor yes, however, she was not the doctor I was supposed to see, nor was she the type of doctor that I was supposed to see. She asked why we were there, which of course seemed strange from the beginning, and then went onto tell us after answering her that she was not a Chiari doctor of any sort, she does not treat Chiari patients, and she was NOT a neurosurgeon. Yeah, not a neurosurgeon, a neurologist yes, but neurologists cannot treat Chiari, only neurosurgeons can. That’s right; strike two for the INI was setting the appointment with the WRONG doctor, and not just the wrong doctor, but the complete wrong type.
Problem three was that once the doctor and we realized that she was the totally wrong doctor, she wanted to simply send us home. Yeah, she didn’t care that we had driven three hours on my wonderful husband’s birthday, and spent the night in a hotel to see a neurosurgeon. She just wanted us to accept the fact that she couldn’t help us and send us home. Ummmmmmmm NO lady, this is unacceptable, and NOT happening. At this point, we were both losing our cool a bit, I was at the point of being so mad that I started to cry, which is something I hate about myself, but that’s how infuriated I was with the whole situation. My wonderful husband who always keeps his cool was even losing it a bit. At this point we demanded to see a patient advocate and the clinical manager. This was unacceptable!
Problem four was when at the end of the visit with the doctor and we asked her opinion on all of the health issues she simply stared at the two of us for about 2 minutes, and then started rambling about her other patients and what she does and does not treat. The ONLY thing that she had to say about my brain scans was that in quadrant four (?) of my brain she saw too much Cerebral Spinal Fluid gathered in one place. Really, lady?
Problem five was when the clinical manager came in and decided that they were going to simply try and pass the buck to who made the appointment, then to my neurologist in Quincy, and even tried blaming us for it at one point. Really?!?!?! What is with people not being accountable for their actions and mistakes?? If I’ve said it once, I’ve said it a million times; a simple apology goes such a long way with both of us.
The only redeeming event of the entire day was that they did eventually get me into the correct doctor after much arguing and demanding. Finally, at 3pm I was sent to the third office of the day to see the correct doctor. That’s right I finally saw the correct doctor, Dr Julian Lin and we actually liked the man, which says a lot in both of our opinions. You can read reviews of him here if you’d like. We were very impressed with his nurse practitioner as well, Julie Deibel, she was honestly the saving grace of the day. She took the time to not only ask about symptoms, but when they came on, when they’ve worsened, etc. She took the time to talk to us about all of my existing medical conditions, gave advice, and told us her honest opinion on things. Explained to us that she thought we should tackle one condition at a time and focus on one thing at a time so that we didn’t become overwhelmed because she saw how easy that could happen with everything we were facing all at once. So, with the neurosurgeons office on board, we’ve scheduled the hysterectomy so that I can be healed from that before the brain surgery. Because no matter how we’d like to sugar coat it to people, essentially that is what’s going to happen, Brain Surgery. If you’re interested in reading how the surgery goes, and the recovery etc, you can do so here at the Mayfield Chiari Center, located in Ohio. If you are a complete freak like me, then you can actually watch the surgery on YouTube here. I can’t help it, I enjoy knowing exactly what is going to happen to me, and how.
Tomorrow I have an appointment with my primary doc, Dr Love (yes, that’s his actual name) to follow up after having been in an accident last Wednesday. I was driving home after getting a shot for my migraine when I was hit by a freaking FedEx truck. Yep, two weeks to the day after I had a freaking gas pump line rupture while pumping gas, I got hit by a truck. I suffered whiplash and a cervical sprain in my neck due to the accident. Needless to say it’s been an eventful month so far.
The best part of all of it though is that I finally married my best friend. I would be lost without this amazing man next to me supporting me in everything and never leaving my side. He’s an even better advocate for me than I am for myself, he’s my rock through everything, and if I didn’t have him then I’m not sure I could handle the prospect of having my head cut open. I don’t have much more to say about any of this really, and as always if you have questions about any of it please don’t hesitate to ask. I may not always be forward about things, but I will answer questions as much as I can. So that’s that. Hopefully I didn’t freak anyone out too incredibly much and now you know the whole story. At least you know about as much as we do.