12 days post op

Well, I decided to update my blog, because my journey is not over yet and I do send people that ask about my disease to this blog, so I thought I should post how my recovery is going from time to time.

The first 10 days were so far the hardest, being at home and wanting to do things, but not being able to do things is hard. This last week, I have cried alot, I guess I had unrealistic expectations of what it would be like when I got home. My brain tells me one thing and my body tells me something else. I can't bend down for anything and it seems like I am dropping more things :) I can't lift more than a gallon of milk, I can't drive and I can't twist. It is easier said than done, especially with two kids and a husband whom has only done laundry a handful of times. He is a fast learner lately. However, I must say that something happened for me at the 10 day mark. I woke up and started feeling better, I can tell my body is healing. I can also tell when I am doing too much. I certainly don't want to undo anything that was done with this surgery, but you can only look at that piece of trash on the floor so many times before you have to pick it up.

I am borrowing one of those "grabber" things and that helps for the light weight items to pick up with out bending. I did 2 loads of laundry today, it wasn't easy and I did get the girls to help load and unload the dryer. I have a little pain at the incision site and a dull/achy pain to the left of the incision. I have some shooting pain if I bend (which I am not supposed to do, but it happens when you aren't thinking about it). I can feel the plate in my back, this is the worst when I go to sleep at night, I tend to turn a lot and I know I twist in the bed, so I get some pain from that.

I am only taking Vicodin at night and maybe once/twice during the day. I don't feel like I need it as much. Time will tell how the surgery has went and I will keep you updated on my recovery.

Here is wishing everyone a healthy, happy and much brighter 2010!!!

At Home & Recovering

I made it home, it took about 5 1/2 hours, the ride wasn't too bad, I stopped every hour and stretched and walked. The first night home, I managed to sleep from 10:30 p.m. - 9:30 a.m. on one pain pill, so I was thrilled. I have to sleep on my side and then switch sides. I am in pain when I sit in one position for too long. I am following doctor's orders of not bending, twisting, picking anything heavy up, driving, etc...

I am thrilled to be home and see my kids. It was so nice just playing board games and watching television with them today. Lauren is getting used to me not picking her up, although she still asks with that big ol smile on her face, knowing the answer before she even asks me.

I go back for my post op appt. in a couple weeks, I am feeling pretty good so far. I don't know how much the surgery has helped me and I won't know that for some time. I don't want to push my recovery and end up undoing anything that has been fixed, so I am going to take it easy. I will post more if anything newsworthy comes up. I will post after my post-op appt. and after my MRIs that I have to get coming up, to make sure the cyst has not re-filled.

Day 3 - Post Op - Discharged

It's 7:17 p.m. and I just got discharged from Heartland and settled into our hotel. I am wore out, shaky, sore & tired. I didn't get much sleep last night, someone thought it would be a great idea to vaccuum at 4:00 a.m. right outside our door. I sat around most of today waiting for Dr. Fiegenbaum to show up and check on me, he showed up at 5:15 p.m. and it took about an hour to get discharged. The trip to our hotel (1 mile) was very hard, every bump I felt. I am dreading the drive home tomorrow, but want to see my kids so badly. It is going to be a long 4 1/2hour long drive home tomorrow. I have to take lots of breaks, getting out and walking. Dr. F. asked me if I felt any better and I told him that my main complaint was bending down and that is one of the things I can't do for a while. No bending, twisting, baths, driving, picking up anything heavier than a gallon of milk for 3-4 weeks. I don't know if I am any better yet. I do know that I had horrible knee pain since Thanksgiving and that pain is no longer present since surgery.

I have a 4 inch incision in my back and I can feel my nerves waking up, I have some shooting pains going on, but my main pain is the plate and screws in my back. I am on vicodin every 4-6 hours. He also de-tethered my spinal cord and sent that off to the lab for analysis. Only time will tell if the surgery was successful.

I have a follow-up appointment on Jan. 8th at 12:30 p.m. in K.C., MO at Dr. F.'s office.

Now it's time for me to start healing, I will be taking it easy for quite some time. Merry Christmas to all if I don't see you around the holidays.

Day 2 post op.

I have hit a few milestones late last night and during the night. I walked 2 times around the hospital with my walker. I got my catheter out, hope I NEVER have to have one of those in again. The nurse said if I could go pee in the toilet by 4:00 a.m., I wouldn't have to self-cath. She gave me until 4:30a.m. and I went. So happy about that. I walked to the bathroom without my walker this morning...very proud of myself. I was a little shaky and had a nurse right next to me, but I did it.

After breakfast, I got up and went to the bathroom by myself, and then Chris and I walked to the cafeteria and got a coffee, so I am making huge strides. All the nurses are saying that I look so much better than yesterday.

I got my i.v. taken out this morning, but the needle is still in my hand, just in case. I may get to take a shower tonight, if Dr. F. gives me the go-ahead. I am expecting him anytime for a check up on me.

My main pain is my lower back, where the plate is. I can feel the plate at all times. I am on all kinds of pain pills, so it helps. I had to get out of the hospital bed, I've been in it pretty much non-stop since 1:00 on Friday, with just a few exceptions. I am sitting up in a chair now. I expect to get released tomorrow, then Chris and I are going to check into a hotel, before attempting to drive back home.

Dr. F. said that my recovery will be a long road ahead, absolutely no twisting, bending, lifting more than a gallon of mile or driving for the first 3-4 weeks. I have to come back out here on Jan. 8th for a post-op visit. I am feeling a little light-headed, so I must go now.

laying in bed

im gonna make this short, i feel better, tired of laying flat, just got my 1st, 10-degree raising of my body at 9:00 am , this will keep happening until 3:00 and then i get to try to stand up.

it is hard to eat breakfast laying completely flat. food kept falling :)

i did have tethered spinal cord, which dr. f released.

my incision site hurts, where they put the plate and screws.

Day of Surgery

I added this post to tell a little about my day of surgery.

My surgery was at 1:00 and I had to arrive at Heartland at 11:00 a.m. I couldn't eat/drink 8 hours prior to surgery. We arrive at the Hospital and register. Chris and I take a seat and the waiting room is full of people. I spotted another couple that the girl had similar clothing to mine, I wondered if she was another Tarlov cyst patient. Finally after about 20-30 min. they called my name and took me up to a pre-op room while Chris waited in the waiting room. I was to see him one more time before surgery.

I got up to my pre-op room and changed into my gown and waited nervously. The nurses were so nice, I filled out paperwork, answered health questions , got my i.v. inserted, took some meds and talked to anethesia. I remember two different anethesia nurses (one male, one female) coming to talk to me. I told the female anethesia nurse how nervous I was, because I have never had surgery, or anethsia. She said they would give me something to help calm my nerves. Dr. Fiegenbaum and Debbie West showed up about 20 min. prior to surgery and Dr. Fiegenbaum came into my pre-op room and talked to me and made a mark on my back, where he was going to enter. I didn't see them again until post-op. The male anetheisa nurse came and explained how I was to have monitors on me at all time and where they would be placed on my body. Also I was explained that there would be someone in the operating room monitoring my anetheisa and someone monitoring my nerves. Chris came up to my room and said his good-bye to me and the next thing I remember was being wheeled away on my bed. I vaguely remember going in an elevator to the operating room, but I must have been getting some pre-anethesia, because I don't remember much. I remember being in the operating room and looking up and seeing those huge lamps looking down on me. That's all I remember. I was told the operation took 2 1/2 hours and I was in recovery for 1 hour. When I woke up, apparently I asked the nurse some silly questions. I remember being extremely tired. Chris came into my room. I pretty much was in and out of sleep until Sat. morning. I noticed my TED hose had blood on them, both legs, I thought this was odd, but found out that is where they were monitoring nerves, I guess I had some needles in my legs at some point.

Heading to the Hospital

Just finished packing up and am now heading over to Heartland Spine & Speciality Hospital. My pain is still very great. I skipped my pain meds this morning, because I couldn't remember if the hospital told me to take them or not, so I just skipped them. It really confirms that I am doing the right thing, I can't imagine living my life in this horrible of pain or on pain meds. forever. I am praying that everything goes well with the surgery and I will post after surgery when I feel up to it. I miss my kids and can't wait to get home to see them. Also, Santa, if you are listening, it would be nice for a white Christmas, just wait for us to drive home first :)

Thanks to all of you for following my journey thus far, I am hoping for a happy ending to this story.

Pre-Op Appointment

I just got back from my pre-op. appt. Dr. Fiegenbaum and his nurse, Debbie, are so nice. He answered all my questions. I am a little bummed, because I asked him if he thought my lower back pain, which is my worse pain, would go away after surgery and he said that he doesn't hear that people have that pre-surgery, only post-surgery. He said every one is different, and the nerves affect everyone differently, but normally people with these cysts that are pressing on nerves get bowel/bladder, leg, feet, hip pain. I have a little of those types of pain and a LOT of lower back pain. I am questioning my need for surgery. I feel like I do need the surgery, because of the size of the cyst and he showed me how it is eroding my tailbone eggshell thin and just the size of the cyst is huge and he showed me the nerves being pushed and pressed on. I do think that it needs to be drained and sutured closed, but I sure hope that it helps my bending over and lower back pain. He said that at the 3 month mark, I will show some improvement, but that is the point where people try to do too much and aggravate the nerves and can have some issues. Going to take a nap now.....will post more on Friday...the BIG day!!!

Blood Tests & odds and ends

Got my blood tests results back a few days ago and it turns out that I have a UTI, so now I am on anti-biotics for 5 days. I had no symptoms. I also have low blood sugar. They said we can go forward with the surgery. So, anyhow, I haven't started packing yet, I still have to wrap all Christmas presents, clean the house, do laundry, pack, finish Christmas shopping, pack the girls things. I got a lot to do in a short time. Tomorrow is Lauren's first dance recital ever. I am keeping my fingers crossed that she does something, anything up on stage, not just stand there. :) After church tomorrow, Father Chris is giving me an annointing of the sick, or something like that, a special blessing. I can use anything like that, so thanks for all the prayers. I am getting super nervous lately. I have never been under anethesia, I think I am getting screws in my tailbone area, something I am going to discuss in my pre-op appt. I will be bringing my laptop and will post as I can.

Getting Ready

It's been a little bit since I've last posted, I've been busy getting the tree up and down and back up...long story. The house is decorated. Presents are mostly purchased. I've been trying to get it in the girls heads that I am going to be away from them from a little while. Lauren has been exceptionally clingy lately. I took her to dance class today and she did the same thing she did last week, stand there and watch the rest of her class. She is having no desire to join them in tap or ballet. Tumbling is another story. She loves to tumble and do cartwheels. I asked her teacher if next week they could start out tumbling, perhaps she would do tap and ballet after tumbling...she is going to try it. Her recital is 3 days before I leave, so I think she is connecting dance to me leaving or something.

I'm getting a little scared about the surgery, but know I'll be okay. I've had a couple issues lately, my left knee has been bothering me for a week and a half, I don't know why, I must have strained or sprained it. I caught a cold from the girls, but it already seems to be getting better. Yesterday, while out shopping, a car was waiting for my parking spot and Lauren was in her car seat, I decided not to get out and help her with her seatbelt, instead I twisted around to get to her in back and when I did this, I felt a pain in my chest. This pain has been there for 24 hours now, but has got a little better. I feel it when I take a deep breath. I am giving it a few more days before I call my doctor. Friday, I am going for my pre-surgery blood tests. I leave in under 2 weeks.