Wednesday, March 26, 2014
Hopefully the Last Surgery
I recently had my 4th and 5th procedures and they are hopefully the last for a while. I had a neuromodulator placed in my lower back. This device stimulates the nerves in my sacrum. I have a lot of internal paralysis due to the lipomyelomeningocele and complications of the removal of the tumor. If all goes well, I will regain function of some of my internal organs and have a more normal lifestyle. I don't know how much I will recover, but I am hanging onto hope that things will improve with this device. I know that I will possible face more surgeries in the future, but for now there are no more planned procedures. I have spent over a month in the hospital, undergone 5 procedures taking more than 17 hours of surgery time, and around 30 inches of external scars. Needless to say my body has gone through a lot of trauma this last year. Healing comes slowly and I will be in recovery phase until November. It has felt like every time I start to feel better from surgery, I have to go in again and do another one. I am really excited to have no more procedures on the horizon and I look forward to felling better and staying that way.
Rob will be finishing up his second year of medical school in May and then taking his first set of boards. We are excited and nervous because these will have a big impact on his future education and career. We are excited to be moving to Logan, Utah in the beginning of June. We found a place in Hyrum and will hopefully be signing the lease this next week. We also bought another car this past week. Dad will be driving it from Utah out here to pick the boys and I up. We are going to be visiting my parents for the month of May while Rob studies for his tests. We felt that he would do better without the boys and I around to distract him and take up his time. I am excited to come back to Idaho for a few weeks and just play with my kids and parents.
Tuesday, January 21, 2014
Another Day, Another Surgery
Well it seems like our lives go from one surgery to the next. I had another surgery this past week. It was an abdominal sacral colpopexy. I have 22 staples in my abdomen and another 10 inches worth of incisions. I have another 12 week recovery in front of me, but things are looking up. This surgery was particularly difficult because of the emotional side of things. This surgery fixed all three of my prolapses and some torn pelvic floor muscles. It also involved a hysterectomy. The decision to not have any more children naturally has been a difficult and prayer filled one. Rob and I felt the there were many risks involved with another pregnancy, and a lot of difficult issues to deal with daily if the surgery did not take place. I am at peace with the decision, but know that it will continue to be hard for many years. For now, we are focusing on getting me healthy again, and then adoption somewhere in the future.
Thursday, December 19, 2013
Haircut and Family pictures
We took some family pictures a few weeks ago and they turned out really well.
The medications and surgeries have really done a number on my hair and most of it has fallen out. I was loving my long hair, but it was getting so thin so I decided to cut it short. It is a bit shorter than I was expecting and shorter than I have ever done it before, but it is kind of fun to have short hair.
A bit short, but thankfully it will grow!
Friday, November 1, 2013
Repair Surgery
I got my stitches out around 4 weeks post op. Things were looking good for a while, but then we started to notice an increase in swelling along the lower portion of my incision. I had one day right before getting stitches out where a small amount of clear fluid was leaking from one of my suture holes. We were told to go in immediately if this should ever happen. Of course this all started around 11:30 at night. So off to the ER we went. There are no neurosurgeons in our little town so they called down to Columbia to ask what to do. They were told to put a bandage over it and for me to go in the next day. What a waste of going to the ER! After a frustrating visit we went to Columbia to meet with my neurosurgeon. She didn't know for sure if it was CSF (cerebral spinal fluid) or just fluid from the surgery. We kept a close eye on things and continued to move forward.
My swelling continued to increase and I got in to see the surgeon again at 6 weeks post op. She was not at all pleased with the swelling and decided that it was most likely a CSF leak. It seemed to be a slow leak, but the incision was obviously not healing properly inside to seal up the leak. She decided to have the incision re-stitched and ordered and MRI. The reason we put the stitches back was to give the area as much support as possible. She was concerned that the CSF was leaking out, but that it could also go back in and put me at extremely high risk for infection.
After a painful hour getting all the stitches back in I headed off to get my MRI. Before it was even completed the surgeons had set up an appointment for me to have a CSF leak repair surgery and a gluteal rotation flap. With the first surgery I had 8 layers of synthetic tissue placed over the damaged dura (protective layer of tissue that surrounds the spinal cord and csf). I would have the repair done in a matter of days, and meet the plastic surgeon who would be doing the rotation flap. The plastic surgeon planned on making a long incision starting from the top of the original scar and extending all the way to my right hip and down my pelvis. He took the skin and other tissues in this area and rotated them over the original incision on the spine. They did this so that the area would be covered by stronger, thicker and healthier tissues.
Once again I found myself headed off for surgery and another long stay in the hospital. The second surgery took around 6 hours to complete and has left me even more limited in m movements. I am not allowed to bend or flex my hips at all for 6 weeks. This means that I can't bend at all. I have to either stand still or lie down flat. I can't lift my feet to walk and am not supposed to take big steps so I have to slide my feet slowly along if I want to move at all. I can't get in or out of bed on my own and have to be completely dependent on others.
I spent one weeks in the hospital this time. I didn't have a lumbar drain placed in my spine this time so there were not headaches. I had to stay so long because of an unusual culture of my CSF. They found a very rare bacteria growing in my CSF called Roseamonas. There is not a whole lot known about this particular bacteria and so they wanted to watch me for a few extra days to see if I started developing any signs of infection. This also had to be reported to the Centers for Disease Control and I will be meeting with them in another week. We are still not sure of all the implications of this and take things day by day. Rob's mother is still out here taking care of our boys. She has done a wonderful job with them. Matthew is nearly potty trained thanks to her efforts! By the time I am actually allowed to hold Jeffrey, he will be 6 months old, and I will not have held him for half of his life. The mental part of this challenge is perhaps the most difficult. I try to find things to do in bed all day long as I watch my husband take on extra burdens just to keep things running. He has done more for me than words can express. I am so blessed to have him in my life!
My swelling continued to increase and I got in to see the surgeon again at 6 weeks post op. She was not at all pleased with the swelling and decided that it was most likely a CSF leak. It seemed to be a slow leak, but the incision was obviously not healing properly inside to seal up the leak. She decided to have the incision re-stitched and ordered and MRI. The reason we put the stitches back was to give the area as much support as possible. She was concerned that the CSF was leaking out, but that it could also go back in and put me at extremely high risk for infection.
After a painful hour getting all the stitches back in I headed off to get my MRI. Before it was even completed the surgeons had set up an appointment for me to have a CSF leak repair surgery and a gluteal rotation flap. With the first surgery I had 8 layers of synthetic tissue placed over the damaged dura (protective layer of tissue that surrounds the spinal cord and csf). I would have the repair done in a matter of days, and meet the plastic surgeon who would be doing the rotation flap. The plastic surgeon planned on making a long incision starting from the top of the original scar and extending all the way to my right hip and down my pelvis. He took the skin and other tissues in this area and rotated them over the original incision on the spine. They did this so that the area would be covered by stronger, thicker and healthier tissues.
Once again I found myself headed off for surgery and another long stay in the hospital. The second surgery took around 6 hours to complete and has left me even more limited in m movements. I am not allowed to bend or flex my hips at all for 6 weeks. This means that I can't bend at all. I have to either stand still or lie down flat. I can't lift my feet to walk and am not supposed to take big steps so I have to slide my feet slowly along if I want to move at all. I can't get in or out of bed on my own and have to be completely dependent on others.
I spent one weeks in the hospital this time. I didn't have a lumbar drain placed in my spine this time so there were not headaches. I had to stay so long because of an unusual culture of my CSF. They found a very rare bacteria growing in my CSF called Roseamonas. There is not a whole lot known about this particular bacteria and so they wanted to watch me for a few extra days to see if I started developing any signs of infection. This also had to be reported to the Centers for Disease Control and I will be meeting with them in another week. We are still not sure of all the implications of this and take things day by day. Rob's mother is still out here taking care of our boys. She has done a wonderful job with them. Matthew is nearly potty trained thanks to her efforts! By the time I am actually allowed to hold Jeffrey, he will be 6 months old, and I will not have held him for half of his life. The mental part of this challenge is perhaps the most difficult. I try to find things to do in bed all day long as I watch my husband take on extra burdens just to keep things running. He has done more for me than words can express. I am so blessed to have him in my life!
This is a picture after the first surgery. the cord is the lumbar drain coming out of my spine and taped down. The incision is about 6 inches long.
Day after first surgery.
My incision after the second surgery. The incision is about 1 1/2 feet long.
Wednesday, October 9, 2013
Four Weeks Post-op
It has now been four weeks since my surgery and things are slowly improving. My legs are continuing to function well and I feel that I am slowly gaining strength each day. I continue to use a walker when out of the house, or to get up and down, but I feel much more confident without it while around the house. My surgeon got a copy of the surgery and we watched that yesterday. Needless to say Rob was very excited to see what they did and he was able to explain a few things to me. After watching the surgery my only thought was that I am sure grateful I was asleep for that entire thing because it wasn't pretty. I am still having troubles with the bladder and bowels so we are not sure if I will regain any function there. Usually nerve damage is permanent but there is a small chance that nerve function will improve as swelling from surgery goes down. If function is not regained then we will take the next step. I will be meeting with a urologist in another 4 weeks to see what my options are. For now the big focus is to take it easy and allow my body to heal. It can be very frustrating to lie down and do nothing while everyone else picks up the slack and takes care of the family, but I am trying to have patience. I have had so much help and support from my family and feel so blessed for all they have done for me. It has been fun to have different family members come out and spend time with me and my boys. I love having company all day every day and will really miss that when this is all over. I am grateful for a loving Father in Heaven who has watched over me continually, and who has blessed me and my family so much. The outpouring of love and prayers has been very humbling and Rob and I are extremely grateful.
Sunday, September 22, 2013
Spinal Surgery
I had my spinal surgery on September 10th. I had a 12 day stay in the hospital and got home just yesterday. I have a 6 inch long incision on my lower back, as well as a small incision for the lumbar drain. Surgery went well and lasted a little over 4 hours. This was much faster than expected. My surgeon said that the tumor has eaten through the dura (tissue that encloses the spinal cord and keeps the spinal fluid (CSF) from leaking out) on both sides. They removed a lot of the tumor which was tethering my spinal cord. During surgery they do something called neural monitoring. Basically the hook up electrodes to your nerves and monitor them during surgery to see how responsive they are, and to make sure they don't do any damage to the nerves. I had a 300% increase in the communication to my nerves in my legs as soon as they detethered my spinal cord. To me this was such a blessing. We went ahead with surgery in hopes that we would be able to save my legs and cause less damage than daily life was causing. We both feel that this surgery has already been a success because of that increased nerve communication.
Due to the fact that I no longer had any dura around the tumor, the surgeons had to recreate some for me. I have 8 layers of synthetic tissue placed in the area of the tumor as well as some of my own muscles in hopes that they will all fuse together properly and not leak any CSF. Because of all the synthetic layers the surgeons wanted to drain off small amounts of CSF so that there would not be too much pressure in my spinal canal after sewing me up. They placed a small catheter in my spine and taped it to my back. They left the drain in for a little over a week so that things could heal up without pressure. Unfortunately this drain meant that I had to lay completely flat for they entire time it was in my back. You can only lose so much CSF before it causes major problems. The first few days they wanted to drain off 10cc every 2 hours, and then as time went on, drain 20cc every 2 hours. They placed the drainage bag at a typical height and let things go. I started to get severe headaches and they noticed that I had drained 60cc in 40 minutes. What followed was the most severe headache I have ever experienced. I had what is called a low pressure headache and it literally felt like my head was about to implode. I have only had pain at that level once before in my life, and that was when I was in labor with Jeffrey and each contraction was pushing on my deformed spine that was not fused together properly. The poor nurse could only give me morphine (which causes some people to have headaches) which did nothing to take away the pain, or hydrocodone (which had to be alternated with the morphine so I only got minimal relieve every 6 hours). After 24 hours they were finally able to find a pain medication that worked for me and I was finally able to fall asleep.
Things got better after that first day, and I was able to get the pain under control. Over the course of the next week I was only able to roll from side to side or lay on my stomach. I never realized how difficult things can be when you are not able to lift up your head and have to lie down. Every simple task was very difficult while laying down. Most food is not designed to eat while laying on your side or stomach. We had to learn to be creative and Rob was very good to feed me. Eating, brushing my teeth, using the bathroom, scratching my knee, all of these things were a challenge. Every time I wanted to move I had to call in a nurse who would roll me over and try to make me comfortable. If I was not comfortable, there was little I could do until a nurse would have time to step in and help me. I was grateful for the slow return of strength to my legs. The first day after surgery I could not even lift my foot off the bed. By the end of the first week I was able to roll myself from one side to the other without help. It's amazing what we take for granted until it is gone. I am more thankful than ever before for a healthy and strong body!
When the surgeons stopped draining my CSF, I was allowed to slowly sit up in bed. This was one of the best feelings! I was so excited to get my face out of my pillow and to see more than 2 walls. I had to be careful in sitting up too fast because of the drain on my CSF. It gave me terrible headaches to sit up and so I had to take things very slow. When I started sitting up, I started leaking CSF from around the lumbar drain. After a shot of morphine in the stomach and a few stitches around the drain I was able to sit up again. The next day I got out of bed for the first time and sat in a chair. I was out of be and sitting for a few moments when I started getting a severe headache. We monitored my blood pressure and heart rate. Turns out my HR was 160 and my BP was rapidly dropping. I seemed to have orthostatic hypotension. Basically this means that my body could not maintain my BP when sitting or standing. I was immediately put back in bed for the rest of the day and told not to sit up. This was very discouraging at the time, but once again Heavenly Father's hand was in the experience. I knew I was not going home the next day as planned. I was finally able to get out of bed when they gave me compressions stockings to keep my blood from pooling in my legs.
Soon after this experience my nurse came in and started chatting with me. She has a son with a lot of physical disabilities. We had talked often over the previous week about her life. That day she told me she was looking for a new church. We talked a little about the Mormon church and she said she wanted to take her son and see if the Mormon church had what she needed in life. I was so happy! Rob had given her a proclamation to the family earlier in the week and she loved it. We decided to give her a Book of Mormon and she was very grateful. At this point I felt like it was okay if I stayed a little while longer if it meant that I could help this woman find the gospel. I had been praying that I could be an instrument in His hands while at the hospital. I had met many wonderful people who have a lot of hardships in their lives. Every time I would talk with someone and hear about their struggles, I would think about the gospel and how it was the answer to solve their problems and give them strength to make it through. I am so grateful for the gospel and all that it has done for me. As I have gone through a difficult time with my health, I feel the strength the gospel brings to me. It is my light and my beacon. I am able to endure this trial because of the gospel, it has made my burden easier to bear. I don't know what I would do without my faith in Jesus Christ, and my knowledge in His plan. This trial is temporal and will not last forever. I know that there is life beyond this mortality and that knowledge makes it seems like this trial will be but a moment, while the lessons learned will be forever.
I am now home and learning how to take care of myself again. I am currently using a walker, compression stockings, and a back brace. I know that these things are temporary and I will eventually be back to walking on my own. It will be a long recovery and progress will be slow, but I am just so happy to be moving forward again. Prior to surgery it was difficult each day to see myself lose strength and to know that the damage may be permanent. Now I am even weaker, but I know that each day I get a little stronger and this helps me move forward.
Due to the fact that I no longer had any dura around the tumor, the surgeons had to recreate some for me. I have 8 layers of synthetic tissue placed in the area of the tumor as well as some of my own muscles in hopes that they will all fuse together properly and not leak any CSF. Because of all the synthetic layers the surgeons wanted to drain off small amounts of CSF so that there would not be too much pressure in my spinal canal after sewing me up. They placed a small catheter in my spine and taped it to my back. They left the drain in for a little over a week so that things could heal up without pressure. Unfortunately this drain meant that I had to lay completely flat for they entire time it was in my back. You can only lose so much CSF before it causes major problems. The first few days they wanted to drain off 10cc every 2 hours, and then as time went on, drain 20cc every 2 hours. They placed the drainage bag at a typical height and let things go. I started to get severe headaches and they noticed that I had drained 60cc in 40 minutes. What followed was the most severe headache I have ever experienced. I had what is called a low pressure headache and it literally felt like my head was about to implode. I have only had pain at that level once before in my life, and that was when I was in labor with Jeffrey and each contraction was pushing on my deformed spine that was not fused together properly. The poor nurse could only give me morphine (which causes some people to have headaches) which did nothing to take away the pain, or hydrocodone (which had to be alternated with the morphine so I only got minimal relieve every 6 hours). After 24 hours they were finally able to find a pain medication that worked for me and I was finally able to fall asleep.
Things got better after that first day, and I was able to get the pain under control. Over the course of the next week I was only able to roll from side to side or lay on my stomach. I never realized how difficult things can be when you are not able to lift up your head and have to lie down. Every simple task was very difficult while laying down. Most food is not designed to eat while laying on your side or stomach. We had to learn to be creative and Rob was very good to feed me. Eating, brushing my teeth, using the bathroom, scratching my knee, all of these things were a challenge. Every time I wanted to move I had to call in a nurse who would roll me over and try to make me comfortable. If I was not comfortable, there was little I could do until a nurse would have time to step in and help me. I was grateful for the slow return of strength to my legs. The first day after surgery I could not even lift my foot off the bed. By the end of the first week I was able to roll myself from one side to the other without help. It's amazing what we take for granted until it is gone. I am more thankful than ever before for a healthy and strong body!
When the surgeons stopped draining my CSF, I was allowed to slowly sit up in bed. This was one of the best feelings! I was so excited to get my face out of my pillow and to see more than 2 walls. I had to be careful in sitting up too fast because of the drain on my CSF. It gave me terrible headaches to sit up and so I had to take things very slow. When I started sitting up, I started leaking CSF from around the lumbar drain. After a shot of morphine in the stomach and a few stitches around the drain I was able to sit up again. The next day I got out of bed for the first time and sat in a chair. I was out of be and sitting for a few moments when I started getting a severe headache. We monitored my blood pressure and heart rate. Turns out my HR was 160 and my BP was rapidly dropping. I seemed to have orthostatic hypotension. Basically this means that my body could not maintain my BP when sitting or standing. I was immediately put back in bed for the rest of the day and told not to sit up. This was very discouraging at the time, but once again Heavenly Father's hand was in the experience. I knew I was not going home the next day as planned. I was finally able to get out of bed when they gave me compressions stockings to keep my blood from pooling in my legs.
Soon after this experience my nurse came in and started chatting with me. She has a son with a lot of physical disabilities. We had talked often over the previous week about her life. That day she told me she was looking for a new church. We talked a little about the Mormon church and she said she wanted to take her son and see if the Mormon church had what she needed in life. I was so happy! Rob had given her a proclamation to the family earlier in the week and she loved it. We decided to give her a Book of Mormon and she was very grateful. At this point I felt like it was okay if I stayed a little while longer if it meant that I could help this woman find the gospel. I had been praying that I could be an instrument in His hands while at the hospital. I had met many wonderful people who have a lot of hardships in their lives. Every time I would talk with someone and hear about their struggles, I would think about the gospel and how it was the answer to solve their problems and give them strength to make it through. I am so grateful for the gospel and all that it has done for me. As I have gone through a difficult time with my health, I feel the strength the gospel brings to me. It is my light and my beacon. I am able to endure this trial because of the gospel, it has made my burden easier to bear. I don't know what I would do without my faith in Jesus Christ, and my knowledge in His plan. This trial is temporal and will not last forever. I know that there is life beyond this mortality and that knowledge makes it seems like this trial will be but a moment, while the lessons learned will be forever.
I am now home and learning how to take care of myself again. I am currently using a walker, compression stockings, and a back brace. I know that these things are temporary and I will eventually be back to walking on my own. It will be a long recovery and progress will be slow, but I am just so happy to be moving forward again. Prior to surgery it was difficult each day to see myself lose strength and to know that the damage may be permanent. Now I am even weaker, but I know that each day I get a little stronger and this helps me move forward.
Thursday, July 25, 2013
An Update and Some Thoughts
Well it seems as though we have finally figured out the cause of all of my problems. I have something called Tethered Cord Syndrome. Your spinal cord is supposed to move freely within your spinal canal. When you bend, stretch, exercise, or move, your cord moves with you. Since I have a tethered cord, mine does not. It is attached to my canal. This means that moving or stretching my back pulls on the spinal cord, creating swelling, scar tissue and pressure. Due to this pressure and scar tissue, the nerves from the waist down sustain damage. I also have a fatty lipoma in the spine that is about 1 1/2 inches long. All my bladder issues stem from nerve damage. (Since I delivered my second son, my bladder has ceased to function at all. I have had numerous and almost continuous infections as well. My uterus prolapsed (fell out) during the first trimester of pregnancy because of nerve damage to the bladder causing me to strain.) There are a few unexplained things that have happened to me throughout my life and may stem from this issue. The only cure for this condition is surgery to dethether the cord in hopes that the scar tissue from the surgery will be less than the continual damage of daily life. Doing nothing for this condition will only make things get progressively worse. Nerve damage will continue.
At this point, I am just trying to take things day by day. We are still unsure of all of the implications of this condition. I will be meeting with a neurologist this week, and a neurosurgeon in a few weeks. From our current understanding, we are thinking of doing surgery. There are a few risks with the surgery, but it seems like they are less likely than the guaranteed damage from doing nothing. Surgery is not meant to fix any of my problems, but intended to only prevent further damage. Nerve damage is generally permanent, but there is a chance that I can regain some functionality. It will largely depend on how extensive the damage is and how well I recover. Time is of the essence in this situation so the longer I go without intervention, the less likely it will be that I can recover.
When I first found out about this, it was hard. I have always had a fear of spinal damage and those words seemed devastating. I have calmed down a bit and can now deal with the problem a little more rationally. Rob is the type that doesn't worry about things that he cannot change or control. He isn't worrying all the time, which is really helpful for me. It is great to have a stable and calm influence in my life. Rob and I feel blessed that we have been able to find the answer to my problems. We both know that it is still going to be a long road to recovery, but it is possible. At first when I found out about this, I was very worried, but now I feel hope. I know that my Father in Heaven has a plan for me and that it will all be okay in the end. The road will be tough, but with faith, all things are possible. I have felt the hand of the Lord in my life through this ordeal, and I know that He is aware of me, and sustaining me. A sure way to feel better on a hard day is to remember the tender mercies that I have been given. Sure enough I will feel blessed! It is amazing how fast our perspective can change. Before, my worst thought was that I would never have function of my bladder again, Now I know that paralysis is a lot worse, and my bladder issues seem more of a nuisance.
Rob and I are both so grateful for all the prayers on our behalf. We have felt so blessed by your faith. We are grateful for a loving Father who knows our hearts and is watching over us!
At this point, I am just trying to take things day by day. We are still unsure of all of the implications of this condition. I will be meeting with a neurologist this week, and a neurosurgeon in a few weeks. From our current understanding, we are thinking of doing surgery. There are a few risks with the surgery, but it seems like they are less likely than the guaranteed damage from doing nothing. Surgery is not meant to fix any of my problems, but intended to only prevent further damage. Nerve damage is generally permanent, but there is a chance that I can regain some functionality. It will largely depend on how extensive the damage is and how well I recover. Time is of the essence in this situation so the longer I go without intervention, the less likely it will be that I can recover.
When I first found out about this, it was hard. I have always had a fear of spinal damage and those words seemed devastating. I have calmed down a bit and can now deal with the problem a little more rationally. Rob is the type that doesn't worry about things that he cannot change or control. He isn't worrying all the time, which is really helpful for me. It is great to have a stable and calm influence in my life. Rob and I feel blessed that we have been able to find the answer to my problems. We both know that it is still going to be a long road to recovery, but it is possible. At first when I found out about this, I was very worried, but now I feel hope. I know that my Father in Heaven has a plan for me and that it will all be okay in the end. The road will be tough, but with faith, all things are possible. I have felt the hand of the Lord in my life through this ordeal, and I know that He is aware of me, and sustaining me. A sure way to feel better on a hard day is to remember the tender mercies that I have been given. Sure enough I will feel blessed! It is amazing how fast our perspective can change. Before, my worst thought was that I would never have function of my bladder again, Now I know that paralysis is a lot worse, and my bladder issues seem more of a nuisance.
Rob and I are both so grateful for all the prayers on our behalf. We have felt so blessed by your faith. We are grateful for a loving Father who knows our hearts and is watching over us!
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