To be honest, I don't remember much of the week we spent at my in-laws. I am pretty sure I slept most of the time. The pain from my surgery was bad but not as horrible as the pain in my back from lying in the same position all that time in ICU. Every move was a huge effort. I had swelling and nausea as to be expected from that procedure. My balance was terrible, so I didn't ever try to do much without my husband helping me. We stayed up there until my sutures could be removed and then started to plan our drive home.
We returned home and to our own bed. I was still not able to do much of anything, but my mom was here to help out so luckily my support group was able to keep everything running smoothly all around me while I tried to get better.
My energy level was horrible and I was definitely dealing with depression. I had gone from always on the go to doing nothing. Horrible. My body just had no strength. Physical therapy and acupuncture really helped me get thru those first several weeks. I cried all the time. I cried because I couldn't walk to the barn. I cried because I couldn't stand in the shower. I even cried because I couldn't sit up and eat a waffle my husband had made and brought to me in bed. I cried over everything. It was ridiculous. I knew how crazy I was acting, and that made me cry! I was still having nightmares from the angiogram too.
As the swelling went down, I could start to feel a hard object over my right eye. I wasn't sure what it was, but to me it felt like a screw that may have come loose. It was moving also, and it moved along my eyebrow toward my temple. It was causing me a great deal of discomfort and anxiety. I was so worried about where it was going and where it had come from! I had a CT scan done just before Thanksgiving to take a look at it. Also, my voice was still hoarse, so I was looking forward to asking some questions about these items at my follow up appointment. We went back up to the hospital for the appointment on December 2nd. The surgeon felt my hard lump and agreed it was a screw and told us that we could have it removed closer to home or he could do it the following week. I was told to just wait it out with my voice. The following day, I met with a surgeon close to home who was to remove my 'loose screw.' He felt the object and told me that he did not think it was a screw-so he did another CT scan and reviewed my Nov scan and determined that it was a piece of my titanium reconstruction mesh that had bent up and was now poking straight out attempting to poke out of my head. That sharp thing we could feel was the corner of the metal sheet. Unfortunately, that meant that he could not remove it. We needed to have a neurosurgeon nearby just in case-and we don't have that here!
As you can imagine, I did not want to go back to Maryland. I just had not had good luck at that place and was not interested in having yet another procedure done at all! I was heart broken that it was not just a screw. The screw removal would have been an outpatient procedure-the mesh meant more anesthesia and more time in the hospital!
We found out later that my surgeon in Maryland had not even reviewed my CT before my appointment which may be why he just guessed that it was a screw.
The mesh continued to bend and began putting pressure on my eye. I was no longer able to wear my contacts because the shape of my lens curvature had changed. After a visit to the eye doctor, we emailed my surgeon again hoping to speak with him about a fix. He set up a conference call with us. When he called, he told us that what I was feeling was just the normal contour of the mesh and that he did not see anything on the CT that showed the mesh had moved. Well, I had seen an image myself and the 3-D version clearly showed the corner of the mesh was bent up and out, but he had not seen that version of my scan. Also, I had been in his office a couple of weeks ago and he had felt the metal himself. So, after telling him that information and relaying what my eye doctor had said-he thought maybe I should have another CT, but this time in Maryland rather than here. Oh great, more radiation and more time on I-95! I was depressed and frustrated. He clearly did not believe me, the other surgeon I saw here at home or my eye doctor. I wanted to scream!
After WEEKS of basically begging to have my neurosurgeon rethink his screw diagnosis or his 'it is just the normal mesh she is feeling' diagnosis and seeking different options of having it removed, the mesh shifted again and hit a nerve on the side of my face. The pain was excruciating. We considered going to the ER but knew that would be futile. I needed another procedure. The following Monday we called my surgeon and the patient advocate office in Maryland. The next day, I was in the patient advocates office. I was determined not to leave that hospital until this was fixed. They did a CT, and decided that I did need surgery-THAT DAY! I was excited to finally have them agree with us! Surgery number 2 was scheduled for 4PM.
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