Checking In

Wow, it's been a while since I have blogged. I am going to go back and add my 1 year post-op MRI radiologist notes, I thought I already did this, but I haven't. I am doing really good, I am back to doing most everything I have done prior to having this cyst. I am exercising daily, I have lost 23lbs and have about 10 more to lose, to get me back to pre-pregnancy weight. I gained about 20lbs since being diagnosed. There are a few exercises that make my lower back hurt. The superman pose is one of them. I am still waiting for Dr. F., to call to go over my 1 year post op. I will make a note to call him this week. From what I could tell everything looks great after having the one large cyst removed.

FEELING FANTASTIC - 2 MONTHS POST-OP

Okay, So I am feeling great. I woke up a week ago and my lower back pain is gone. The extreme lower back pain I have had since May 2009 is no longer. Yippee!!! I am so happy. I started saying a Miracle Prayer the night before. This was from a prayer card that I lost last summer that was given to me by a man at my church. Anyway, I am about 95% pain free and just have a little lingering pain to the right of my incision that I feel every once in a while. So, I am decided to get on with my life - organizing my house is first on the agenda. There have been so many things I have neglected over the last 8 months. I go for my next MRI on March 15th. I prayer that this healing success continues.

7 weeks post op

Here it is 7 weeks since I have had my spinal surgery. My pain levels have increased lately. Some days are horrible, others not too terrible. I think this is the rollercoaster of pain that I have heard about so much. I start to feel better and want to do things and this sets me back. The worse part of the day is the morning. I am so sore, achy, stiff when I wake up and this decreases as the day goes on. I still have the constant lower back pain that hopefully one day will decrease. I am told that people that suffer with this disease will probably never be 100% back to their old self, I will have to learn what I can and can't do that will aggrevate my symptoms. It is depressing at times, but I feel like I am so much better than pre-surgery so far. My nerve pain is still gone and the only pain I have is the constant lower back pain. I am going to try to take some NSAIDS to see if that will help with inflammation from surgery. I am told that this is a very long healing process and I have to be more patient. I am looking forward to Spring with chirping birds and windows open with the fresh spring smell and flowers in the air. I can't wait. I am on the path to a brighter future, I must realize that it will take longer than 7 weeks to get there. I am so grateful for the people that call me just to see how I am feeling or the emails I get from people telling me that they have learned something from my blog. Tarlov Cyst Disease is so relatively unknown by most of the medical community and I am so thankful that there is research on-going. I hope by the time I am old that this will be a well-known disease and there will be a cure, that people will get to 100% of their old self. I wish the Doctors would have a more open mind about this disease and that yes, they can cause pain and cause other issues. It is my understanding that there are 4 doctors that treat these in the United States. I am lucky to live so near the one that has done the most procedures and has had relatively good outcomes.

4 week mark post-surgery

I can't believe it's been 4 weeks since I had surgery. I feel like I am 60% back to normal, normal being my happy go lucky self prior to this cyst and pain. I feel like I had about 50% nerve pain and 50% lower back pain when this all started last June. The nerve pain is completely gone, the lower back pain still persists. Dr. Fiegenbaum and his nurse, Debbie, both said that the lower back pain may or may not go away. They said it may or may not be related to the meningeal divirticulum or tethered spinal cord. I guess I will just wait and see. I am still on pain meds and wish I could ween off of them, but I still need them for this lower back pain. I am only taking 3 pills a day, I am down 1 from right after surgery. I am sure my body is still healing.

I slipped and fell on ice a few days ago, I landed on my right hand/thigh, went down pretty hard. My right side, lower back hurt for a day or so and that pain is gone. Everything else is pretty much back to normal. I can sit for a good length of time before having to get up and stretch, I can walk, stand, do stairs all fine, bowel/bladder are fine. My only complaint is this persistant lower back pain. I am still happy I went through with the surgery. Only time will tell. I go for my 3-month MRI in March.

3 week post-op appt. ~ January 8th

I am sitting in our hotel in Columbia, MO. Chris and I and the girls went to KC, MO today for the post-op appt. We left at 6:30 a.m. with an expected 4.5 hour drive. My appt was for 12:30, so this gave us an extra 1.5 hours on the road. The side roads were snow covered still and Hwy 70 was pretty clear, with some patchy snow. Lauren had an incident of car sickness on the way to the appt., so between cleaning that mess up and stopping for breakfast and going slower than normal, we showed up at our appt. at 12:31. I met with Debbie, Dr. F's nurse and went over my current state of health. She looked at my incision and said that it looks really good for 3 weeks. I explained that I feel really good, with the exception of lower back pain. The Vicodin seem to cut out my pain 80% or so. They don't know if my lower back pain will get better or not. They said time will tell. They informed me that I need to really watch what I lift and what I do, even if I am feeling better. They cleared me to take tub baths or go swimming. I can drive short distances. Dr. Fiegenbaum came in and said hello and I got some pictures with him and Debbie and even Laura, the clinical coordinator. I will post these sometime soon. I will also try to post my operative reports when I get home. Dr. Fiegenbaum said that I did have a tethered cord and that I had a giant sacral meningeal diverticulum. We got to our hotel and then met up with some friends that moved to Ashland, south of Columbia, the kids got to play at the biggest Burger King play area that I have ever seen, perhaps the biggest one ever built. It was nice to catch up with them. We got back to our hotel and the girls wanted to go swimming. The pool was cold and the hot tub was pretty cool, too. Then we got up to our room after swimming and our heater wouldn't turn off. The girls fell asleep and we ended up having to change rooms. It was miserable. I love being warm, but I can't sleep if I am too warm. The window in our room was iced shut and Chris couldn't open it. We just got to our new room and I am very tired, so I am ending this post. We are heading home tomorrow.

Heading Back to KC? for post-op

My post-op. appt. is this Friday and we are supposed to head back to Kansas City, MO. Physically I am feeling good, especially on my meds. I won't have any problem making the trip, as far as my health. However, we are supposed to get 3-5 inches of snow, according to the news. We opted to wait on making a reservation, just in case. Well, today, I decided I just don't feel like driving out to KC for a 20 min. doctor's appt. What a waste of time and gas. We promised Taylor and Lauren to take them with us this time and get a hotel with a pool. They are super excited. I called Debbie West (Dr. F's nurse/surgical assitant) and asked if I could do the post-op over the phone. She advised me that they really would like to see me in person, if not this Friday, then in a couple weeks or at least at the 3 month mark. The snow we are supposed to receive is supposedly going to be light and fluffy. Does this mean it won't stick to the roads? Needless to say, it is supposed to stop by Thursday a.m., so we have decided to keep our trip as planned and get the post-op. appt. over with and not let down our kids, who think this is the coolest thing ever. Road-trip with mom and dad and an indoor pool. Plus, we have some friends we haven't seen in quite a long time and we wanted to visit with them on our way home. Taylor & Lauren are super-excited about this. Now, if we could only get some warm weather and no snow.

In speaking to Debbie West, she told me that my post-op reports don't show anything alarming. I asked her about the lab of the piece they cut off my spinal cord, Dr. F. thought he was 99.9% sure it was a tethered cord and he sent the piece he cut off for analysis to be sure it wasn't a nerve. It wasn't a nerve it was definitely a tethered cord. So, will post more after our post-op trip in the snow :)

Also, I added a post titled DAY OF SURGERY, it was on Dec. 18th, I wanted to document my day of surgery as I remember it.

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!!!