Spinal cord stimulator

Dear friends,

Sorry its been so long since my last post. Nothing has really changed so I just i didn't have much to blog about besides my emotions which i figure most people don't want to necessarily hear about. I guess the last time I posted was about my sister's fiance Johan, who I am so happy to say, has made a magnificent recovery. As far as myself, again, not a whole not a whole lot has changed. I've tried more therapy, injections, and acupuncture and got little to no relief from any of the procedures. I stopped physical therapy per my pain doctors orders because most of the time it was causing me more pain after the fact than helping. So after many talks with the medical sales rep, talks with my parents, etc, I am going to start a 7 day trial of a spinal cord stimulator on Thursday. The SCS is basically a pacemaker for pain. Electrodes will be placed in my neck that will help to block pain signals. For the trial, all that will be implanted are the electrodes. The wires and the battery will be external. With the SCS i can have different programs and settings depending on the location and intensity of my pain. I turn it off when i drive, but can pretty much have it on as much as a want. The success rate is pretty high. They say with the trial, since the electrodes are not anchored to anything, my pain can decrease 40-50%. With the permanent implant where everything is implanted in my body ( the wires would run down my spine and the battery would be implanted in my loved handle, upper buttocks area. The permanent implant could relieve 80-90% of my pain. The permanent implant would be an day, outpatient procedure. Friends, please pray that this treatment works. Its a big step and a big commitment, as it would most likely be in my body for 10-12 years.

Another prayer request is for Harrison as we go through this process. He is so supportive but it will be a long week. I wont be able to shower (or get my neck wet) so i will probably be washing my hair in the sink and sponge bathing. So i will need his help even more this week. Luckily my mom will be coming up for the week so she will help as well.

Some other big news in our life is that we have a new addition to our family in the form of a dog. We have been talking about getting a dog for awhile now. We went to the humane society "just to look" and when we rounded the corner of cages, there she was. She has the cutest, sweetest face. She is a 5 month old chocolate lab/german pointer. We took her outside to play with her and she pretty much immediately took to us. We put her on hold that night, went to PetSmart and went back and got her the next morning, about 6 days before Christmas. She is super sweet and despite the high energy level of both breeds, she is relatively low key. She is dark chocolate but at the end of her nose has an area of lighter brown. She also LOVES peanut butter so we decided to name her Reese. She is a puppy and has her moments of chewing on things she shouldnt but again, for the most part, she is a great dog, She loves to snuggle and give kisses. She has been a good companion for me during the day.

I will try to remember to post a few days into trial to let you know how i'm doing. Please pray for me during the next week. As always, your prayers and support are so meaningful to me and on some days are the only thing that keeps me going. Emotionally, things are getting much more difficult for me. As the options come and go with no change in my pain, my hope that I'll ever live a pain free life becomes more and more a distant idea. So as you can understand, my hope and my joy in life becomes a little dimmer each day and that is very difficult. I know my hope and joy should come from the Lord but I am having trouble even finding that somedays. Friends, I just need lots and lots of prayers for many many things. Thanks for reading.

Johan

Dear friends, I am sad to report that the day after my last post, my sister's wonderful fiancee, Johan, was in a bad motorcylcle accident where he sustained many injuries. The wreck occured late at night on a windy road up in the montains notoriously called "The Dragon". Due to weather, he could not be flown to the hospital but he had to wait nearly an hour and a half for an ambulance. Luckily his best friend Svend was with him the whole time. If you havent noticed, Johan is not a southern boy. He was born in Denmark, moved to the states (California) around 10 yrs ago, then to Tennesee. Once he moved to TN, he was in a relationship and had a beautiful daughter named Silvia who is almost 3. Johan and Katie met back in January when he came into the red cross where she works to fufill a new years resolution to help more in the community.

So back to the wreck, he had a collasped lung, broken pelvis, broken vertabrae, tore a hole in his bladder, tore pretty much everything possible in his right knee. Then, a few days after the crash when he was considered stable but still in the ICU, my sister noticed his eyes not tracking and his speech more slurred and he was noticable more confused. The doctors and nurses blamed in all on the pain meds but after much pushing, and MRI was done and it was found that he had a minor stroke. At this point, I went home for almost a week to be with my family and support johan and my sister. He was moved recently to a rehabilation facility and is doing remarkably well. He is a fighter and the doctors are confident he can make a full recovery. You can follow his progress through is caring bridge site: http://www.caringbridge.org/visit/johanlarsen

Please pray for his progress and my sister and entire family while they support and take care of Johan. Johan's mother Lillian is in town indefinitely right now so she has also been a major part of his recovery.

I willl try to update on myself soon, there is alot to report. Its been a horrendous week and I have mostly been bedridden. I am excited to be in one of my best friends weddings this weekend but I am unsure how much I can participate in at this time. Please pray for me this weekend and I will update next week. Thanks.
Beth

Lots to share

Preface: this turned into a long one.....read as much or as little as you like.

Ok, ok, so i'm not as good about updating the blog as I want to be. Its hard for me sometime to even put my feeling into words somedays. Somedays, i'm in too much pain to sit up in bed to type on a computer. Excuses aside, here I am. So lets see whats happened lately....On September 29 marked my official "6 month leave" from work so I applied for long term disability. They are still in the process of reviewing my claim and I am still waiting to hear whether or not I will be approved. Of course the doctors didnt fill the form out correctly the first time so they had to resubmit it which has lengthened the process. There shouldnt be any reason why I'm denied but I'm still nervous and just ready to have the weight lifted. I completed my post op rehabilitation therapy but was still having pain so my therapist referred me to a different group of physical therapists still within vanderbilt that practice a different kind of pt called myofascial release. Its kinda a big long word that mean massage. Basically in my case, i have so many muscles and muscle groups that are literally tangled in knots because they are so tight and have been for long. So myofascial release uses manual techniques to get the muscle groups let go and relax. It usually feels good during but afterward i experience pain because it changed the dynamic and the make up of that whole area and my spine is having to learn to support itself more. The night after my first real session, I actually ended up in the ER. This would be visit #4 for those keeping count. We went to vanderbilt this time and had to wait a couple hours, but once i got back to a room and they looked up my history, they treated my wonderfully. We ended up staying for about 7 hours and I was given pain medication through and IV as often as I wanted till I was comfortable. We got home at 5 30 the next morning. Needless to say it was a long night.

Two days later I FINALLY got an appointment with a new pain specialist, Dr. Sun who is not associated with Vanderbilt. He also was wonderful. He said that his first priority was to get my pain under control with the use of medications. He added some, increased some doseages of others. I wont mention specific names of medications but I'll just say they are very strong. I have one medication that last 12 hrs that I take twice a day and I have another that I take when I have "breakthrough pain". Then I even have another that I take when I am having my involuntary jerks and spasms. I'm still on the nerve medication twice a day as well. My bathroom looks like a pharmacy at this point. The long term plan is to try another round of injections and minimally invasive procedures over the next couple months. If that doesnt work, we are looking into what is called an implantable intraspinal stimulator and/or implantable spinal pump for medication. The spinal stimulator is "the pacemaker for pain" and the doctor said he has good results with it his failed surgical patients. Basically what it is is they implant this device in my lower back and run wires with electrodes on it up into my neck. The electrodes will give gentle electrical stimulation to my nerves which will block my nerves from sending pain impulses. My next appointment with Dr Sun is October 23, so pray for all these little procedures I'll be having and for my family and I as we decide on the spinal stimulator and or pain pump options.

Since I've been on the new medication protocol, it has definitely helped. Overall I am taking less medication for breakthrough pain but the daily medication is very strong and I do have days where I feel kinda loopy. I absolutely can not drive on these medications so I am back being stuck at the house most days. My wonderful husband drives me to all my appointments each week, usually 2 or 3. I can not even express in words how amazing Harrison has been. As a caretaker, as a husband, as a friend, as a driver....everything, he has been my rock and the main reason I keep fighting through this. I can't imagine having anyone else support me any better than he has.

I also have had some amazing friends who have been very supportive as well but with my friends, my family, and Harrison, i deal with alot of guilt that I am putting my loved ones throught this. I feel guilty that Harrison immediately after saying "I do" had to deal with the "in sickness and in health" part. I feel that I am not able to fulfill his needs as his wife right now so I struggle alot with that. With my friendships, I also feel that I cant reciprocate much right now. I feel that I have been stripped down to very minimal version of myself. I feel like part of my struggle comes from the fact that with my job, I felt I had so much purpose. I was saving babies, I felt so much worth and so much that I was leading the life God planned for me and I was fulfilling His calling for me. Slowly over the past 6 months, i have lost alot of that self worth, value, and purpose. So when my wonderful friends offer to help me, I have a hard time even saying yes because i dont feel like I am worth them wasting their time and putting the energy into being my friend right now because i dont feel like I dont have alot of positivity to add to the friendship. I apologize for going so deep into this. I didnt expect it. I never really know what to expect when I start blogging these days. Please pray for me as I deal with all these emotions and feelings. I do want to say though that I am seeing a therapist as an outlet to be able to talk about these feelings.

Today I had a fairly decent day and was able to go to a baby shower for a girl that works in the NICU. I was very nervous walking up to the door and I just said a little prayer that it would be ok. I didnt know how I was going to be received after not seeing these wonderful girls in 6 months. Everyone seemed glad to see me and asked how I was doing. A few people seemed genuinely concerned and I was able to talk to more in depth which was nice. At times it was bittersweet when they would mention happenings at work and I felt a little out of the loop but that was minimal. We've had alot of girls at work have babies in the last year so there were several kids there ranging from over a year down to only a few months so it was fun to just watch all the kids. That made me happy.

Another joy that I have had the past couple weeks is we have some friends who had a baby back in August and they litterally live in the neighborhood across the street from ours. They are fellow UT fans and we have goten together with them several time to watch the games. Once I see that sweet baby boy, I usually hold him till they leave 4 or 5 hours later. I think the parents love getting a break for a few hours. He's still little and fairly light and so it doesnt hurt for me to carry him around. When sitting, I grab a pillow or something for support and I just hold him and love on him for hours. It give me so much joy and brings me so much happiness to just be around a baby, even a crying one. There is nothing better than having a baby lay on your chest and nuzzle up to your neck and have them fall asleep. Feeling that precious heartbeat and their breath rise and fall as they sleep is the best feeling. Can you tell that I want to be a mother more than anything? God is a great provider and not only has the baby given me joy but we have also been able to become better friends with a wonderful Christian couple.

This has turned into a long post and for that I apologize. Again, feelings come over me and somehow I have to vocalize them. Nighttime can sometime be hard for me. My poor husband is always exhausted so he sleeps soundly but I usually only sleep for an hour or so at a time because I often wake up because of pain. The silence and darkness leaves me no escape from my thoughts and feelings. My prayer tonight is that I can become more excepting of help and more willing to reach out to some amazing people who have offered their help. I want to be able to call these great people and say "hey, i'm having a hard day and could use a friend." Right now, that is so hard and painful for me to do because of the guilt I deal with. I pray that God can take that guilt and replace it with feelings of worthiness and self value. I also want to be a better friend, wife, daughter, and sister to those that love me and have helped me through this and somehow, someway be able to reciprocate to these amazing people my love, appreciation, and gratitude. These are my prayers.

Thanks for reading.

2 months post op...good new bad news

So it has now been 2 months since I have had my surgery and the last month has been a roller coaster. The bad news is I am still having pain which is very frustrating. I never know if I am going to wake up and feel good, ok, or horrible. I had another CT scan, this time with contrast solution which shows the nerves in more detail. While I havent heard the official results from my doctor, my physical therapist told me the report didnt say that anything specific was wrong which basically means that everything with my surgery looks good. While that is good news, its also discouraging to not know where the pain is coming from. I've been waiting for a couple weeks now to get in with another pain clinic in nashville and I'm still doing physical therapy 2 days a week.
On September 29, I will have officially been gone from work for 6 months....a milestone I never thought possible I would reach. At vanderbilt, if you have been on leave for 6 months, you are terminated and therefore loose your benefits. For months I have been so fearful of this. Well the good news is that i found out that if i qualify for long term disability (which there should be no reason why I wouldnt) then I am not terminated and I will keep my health benefits. This is an answer to prayer. While Harrison and I would be ok on his income, its helpful to be getting part of my income from my disability.
Harrison and my family continue to be my rock during all this. I dont know what I would do or where I would be without them. Thanks for reading and your continued support and prayers.

One month post op today...

It has been a month today since I had my surgery. The past week or so was very difficult. After returning to Nashville a couple weeks ago, I had multiple days of severe pain. I had been doing so well in Knoxville and was even having some days where all i had to take for pain was tylenol! This was huge for me since I have been taking narcotics pretty much every day for the past 6 months. After coming back to Nashville and having so much pain, I was very discouraged. Not only was I in pain, but I was also very depressed at the thought that the surgery might not have been the cure or fix for my pain. I didnt even let myself voice these thoughts and fears because I was afraid to actually say it out loud. After a couple short phone calls, my mom could tell something was wrong and finally got it out of me. It was at this point when I pretty much broke down. I had a good long cry and then took a good long nap. Being able to talk about my fears did help but it did make it more real. I emailed the surgeons nurse practitioner and she told me that revision surgeries can take longer to recover from and that this could be my nerves just kinda rebelling against everything and beginning the healing process. I had my one month follow up appointment this past monday. My mom came in town and harrison went as well. I voiced all my concerns to the doctor and he again was not overly concerned. They took x-rays, which looked good. They felt good about me starting physical therapy but not comfortable yet with me driving since I am still on alot of medication. The other change they made was to my medication for the nerve pain called Lyrica. Lyrica is an anti seizure medication but it also has a great use for fibromyalgia and nerve pain. I have been on 75 mg for several months and since my pain has been so severe, they wanted me to triple my dose. I have been titrating up this week and have started to feel a little better although the medication makes me tired. I seem to still hurt alot at night so i dont sleep well. During the day, I still tire very easily. My mom stayed till thursday and I did alot of activity but after being out of the house for a few hours, I get exhausted. My body is still not used to activity so thats something I will just have to gradually work on.
As far as physical therapy, I start aqua therapy this week where I will do therapy in a small pool. Once exercises in the pool get easy, I will then start doing strengthening and exercises "on land." I have exercises I do at home that I started this week at home for range of motion. They estimate that I have permanently lost about 20% range of motion since my cervical spine is (hopefully) one solid bone from c 3/4 to c6/7.
Harrison continues to be an amazing support and the best husband in the world. I honestly dont know how he puts up with me. He is so caring and is always asking if I need anything or if I am doing ok. At night, when I dont sleep, if i even get out of bed to go to the bathroom he wakes up to make sure I'm ok and if I need anything. He is so so sweet and has taken such good care of me. He has been my rock through all this and I dont know what I would do or where i would be without him. While getting married in the midst of all my health issues and pain was difficult, having him beside me as my husband has been the best blessing. He works so hard during the day and then comes home to take care of me. He continues to be very successful selling signs and is on the verge of closing on a huge project that he has worked termendously hard on for the past month. I am so proud of him.

Recovering well

Hello all. So sorry for lack of updates. All my energy has pretty much gone to recovering the past couple weeks. My surgery on July 15 went very well and the doctor was pleased. I spent the night in the hospital and was able to come home the next day. The pain after surgery was pretty bad...not only in my neck, but in my hip. To replace the disk that were removed, they chiseled bone off my left hip. I have about a 2 inch incision on my hip and about a 3 inch incision on my neck where my previous incision was. The doctor did find that I had not healed correctly from my first surgery so he did redo those levels as well. My mom was in Nashville for the days after my surgery and on the sunday following surgery, I went home to Knoxville with her to recover. Harrison had to get back to work and with him needing to be gone all day for work, it was better for me to be in knoxville where my mom could take care of me. I spent 11 days in Knoxville with my parents and just got back to Nashville Thursday night. Its good to be home and definitely good to be back with my wonderful husband who i missed terribly. I seem to be recovering pretty well, although I still am having some pain. I can't drive for another 2 weeks till I go back to the doctor and I also have to wear a soft collar neck brace till then as well. All in all, things are going well. After i see the doctor in a couple weeks, I will get back into physical therapy. My recovery time is supposed to be about 8 weeks so hopefully I can go back to work around the middle of September....thats the hope and the goal at least so we'll see what happens. I want to thank everyone for all the well wishes and prayers. I have definitely felt so much support and love during this time. I'll try to update sooner next time!

Surgery

Surgery is a go for tomorrow at 11:30. It will take about 3 hour and I will spend a couple hours in recovery before I will be put in a room where I will spend at least 1 night, maybe 2 depending on how I am doing. The plan for surgery is to go in a first remove the metal plate and 6 screws from my first surgery. The doctor will then assess my fusion of c4/5 and c5/6. There is concern that I am not fused from my surgery, meaning basically that I could still be experiencing some pain from that area. If needed, he will redo my previous procedure and incorporate the c 3/4 disc as well. They will take bone from my hip to place into the areas that previously contained my discs or cadaver bone from my last surgery. I'm really worried about the pain in my hip after surgery because i've heard its pretty bad.

I know that this is the right decision but it doesnt make the idea of surgery any less scary. My knowledge as a nurse isnt necessarily a good thing in this situation because i just worry about all the things that can go wrong. I know that God will take care of me and that I have alot of people praying for me. Its been a long, difficult 4 months that I have been struggling with this and I'm ready to get it over with. I'm ready to get back to life and to work. As far as recovery, they said it would be about 8 weeks before i could get back to work, and even then I might have to go back doing paperwork type stuff, not patient care because I may not be able to lift and stuff yet. We just have to take that as it comes.

I ask for prayers tomorrow for me, my surgeons, nurses, and the whole medical team that will take care of me tomorrow. Please pray that I dont have major issues with pain post op and that things go smoothly. I will post as soon as I am able. Thanks for the support.