Its been almost a month since my surgery. That morning started with a splitting headache before I even got to the hospital. I think part of it was because the surgery was late in the day and I couldn't eat the whole day before or that morning. We brought Max to my parents house and headed to Boston. My surgery was scheduled for 3:30 and we got there a little after one. I checked in, got lab work and before I knew it I was changing into my gown and fancy slipper socks. I asked for some IV tylenol which helped the headache a bit then the surgeon came in and they told me to shut my DBS off even after we told them it had a surgery mode. So, I shut it off then off I went into the OR.
I remember moving onto the operating table and what seemed like seconds later they were pulling a breathing tube out of my throat. They woke me up too soon so I felt it being pulled out. yikes.
The next thing I remember is being in recovery and telling the nurse my nose hurt. She was working on getting me some pain meds and while we waited I was told multiple times that my DBS would not turn on. I figured once they let Jim in he would be able to turn it on for me so I didn't panic. Not long after Jim came in to see me and my DBS still wouldnt turn on. I was drifting in and out but I remember a few things like the nurse telling me I looked like Elizabeth Moss, telling me to go back to sleep every time I asked for something and then finally bringing me a drink with a straw (I was told I couldn't drink from a straw for 6-8 weeks). She kept telling me they were cleaning a room for me but I didn't actually get in my room until 11.
By then I was in quite a bit of pain but had to get up to use the bathroom. Every time I sat up my nose would bleed so walking to the bathroom was difficult. They told me I could have 1L of liquid per day but weren't really measuring it so the next morning at 8am I was already more than halfway through my limit. My mouth was so dry and they couldnt find my bags (that had hard candy in it!) and my DBS was still off. my feet were both curling in and my hands were getting tighter so I started to get a little worried. I kept asking all the doctors and nurses if they could send someone from neurology to help me and they kept saying they were trying but then I found out no one was coming. The excuse they gave me was that they dont do that at that hospital... which is not true at all.
I called the abbott rep that I work with to see if she knew someone that could help me and within minutes a guy named Chris was calling me. I had worked with him before but it had been a while. He was 2 hours away and ready to go on vacation and told me he would drive to Boston to help me. I started crying when he told me he was willing to do that. He said my DBS should never be turned off and if they used electrocauterization they could have killed my battery. If that was the case I would need emergency surgery to replace it. I was so scared, emotional, in pain and didn't know what to do or think. Not only was I trying to recover from a surgery but now I was thinking about what I was going to do if my DBS was dead. All I could think about was Jim and the kids, I had to get home and be ok to take care of them all. The day slowly went by, they were checking my blood work frequently and Chris came to see me early afternoon. He was able to reboot the DBS and it turned back on thankfully. He was my hero that day and I couldnt thank him enough. The ENT, Neurosurgeon and endocrinologist had all already come to see me and it seemed like once Chris left I woukd be good to go home. I got one more set of lab work and was checking the results online when the nurse walked in with a worried look on her face. They were now concerned I might be developing diabetes insipidus. More tears came and me and Jim sat there while we worried together about all of my health problems and also what the kids were going to do if I had to stay another night. I just hoped after my 6pm labs they would tell me I could go. Thankfully, the numbers looked better and I was able to go home and get more blood work the next morning outpatient.
Max had an appointment the next morning at the same location I could get labs drawn so it worked out. It was a difficult day, the headaches were pretty bad and my nose was still bleeding often. My eyes hurt pretty bad too and any light or screen was impossible to look at.
Over the next few days, I tried to rest. The headaches were the worst Ive ever experienced. I had left ear pain, a sharp stabbing pain in the back of my head and headaches so bad I could barely hold a conversation or open my eyes.
Over the next couple weeks I had to get blood work several times and had a couple conversations with the PA at the neurosurgeons office. My cortisol was now low, which she believes was part of the reason why I was feeling so terrible still. This can indicate adrenal insufficiency, which is the biggest reason why my endocrinologist told me for a while surgery was not recommended. I was put on hydrocortisone twice a day and hoped it would be temporary. The headaches started to get better but the eye pain was still so severe. I never got any answers on why or how long this would go on but I think its just from the pressure on my sinuses and using my phone or watching TV was just too much for my eyes abd brain for a while. If I was on my phone for more than a couple minutes I would end up in a dark room with an ice pack over my head and eyes for hours. It was by far the worst experuence Ive had and for days I cried and wished I didnt do it.
Now that I am starting to feel better and can actually function again, I'm a little more hopeful and glad its over with. I have many follow ups coming up with endo, ENT, neurosugery, MRI's and blood work. I am hoping everything comes back with good results and I can eventually go off my meds and live a somewhat normal life. Its definately scary and some days I didnt know how I would ever get through it but I made it. I am now finally able to pick Max up, drive my car and have conversations with people. I am trying to stay positive and hope for the best! I appreciate all the well wishes and those of you who checked on me. I appreciate my parents for helping so much with the kids, I appreciate all 3 kids for being so suuportive, helpful and well behaved, and most of all I appreciate Jim for all the rides to doctors visits, making sure the house was picked up, the kids were taken care of, I had my ice packs and medications and just for being by my side through such a difficult time. I love you all! ❤
I think my hardest days are finally over!!
I have been doing as well as could be expected. I am back in Florida so it's nice to be with Ryan. Although I am still upset about the whole thing, I am trying hard to smile and not let it show. The spasms have returned and have gotten worse since the DBS was removed. When I suck on a piece of candy or ice, my throat tightens up. It's very scary but Im hoping it won't get any worse. My neck also twitches sometimes and my foot spasms have come back. My hand is curled in but if I think about it, I can straighten my wrist (not my fingers). The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open. I had never been so excited as I was that day. I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey. Hailey helped me ...
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