Latest Report 11-19-2016

19 11 2016

It has been a very long time since I have written but many have been asking what has been going on with me. Like always I am never quite sure and always waiting on additional testing to confirm an actual diagnosis. I had a Pet/CT about 6 weeks ago that showed 3 new areas of concern. The doctors said they are small and not 100% sure if it is more cancer or not. The doctors have scheduled another scan to be done in 6 weeks. If the 3 areas show up again and have enlarged then it will confirm cancer and I will have to work with my oncologist and oncology surgeon to decide on the next steps. They have talked about possibly trying an immunotherapy since I did not tolerate the chemo. On a more positive note if the 3 areas do not show up on the next scan or if they show up and have not changed in size then it most likley is not cancer. I praying for the later. As for my overall health, I deterorating! The nerves in both hands, wrists, elbows and right shoulder are all severly damaged and the nerve conduction studies showed that there is moderate to severe decrease in conduction. I am in intense pain all the time and I have trouble holding on to anything, if I am even able to grasp anything. The last 3 days the pain was so intense that I cold not move my left thumb or wrist. This makes everything challenging. I have trouble with simple daily tasks like brushing my hair, holding utensils, writing, cooking, etc. They have given me wrist braces for both hands. When I lay down at night to sleep both hands go numb and I cant feel them or if Im driving and holding on to the sterring wheel to long the go numb. I have terrible neck pain that radiates into my right shoulder making it very painful to move my right arm. Sleeping is now non existent. If I am lucky I may get 20-45 minutes of sleep then the pain wakes me up and I need to get up and move around. My lower back is also very painful and it is hard to change positions. If I sit to long it is hard to get up and walk, if I stand to long my legs get very weak and if I lay down I have severe burning pain in my thighs, butt and lower back. I also have developed sever right knee pain and there are three nodules that have formed around my knee cap. Besides being very painful, my right knee makes a loud popping sound when I bend it or pivot on my feet which makes me unsteady very week. I can barley go up or down stairs now and must have a handrail or someone to help hold on to me. It feels like I can no longer trust that I will have the strength to support myself. So why is this happening? After many texts, x-rays and electricle studies they have found that my cervicle spine implant did not fuse. This is causing my neck pain and some of my arm, wrist and finger pain. They also found that I have nerve damage from my spinal cord being compressed. The spinal cord compression was fixed with my c-spine surgery so this is residual damage that is now permanant. According to the doctors nerves can regenerate up to a year after dying or being damaged and I am a little over 2 years out from surgery. Second there is some controversy over why my carpal tunnel surgery did not work and I now have severe carpal tunnel in both wrists. I have not done anything to develop these issues. I also have bilateral nerve damage in my elbows. They did to the electrical studies that show there is severe delays in the condustion but that study can not tell what is causing the problem. The new orthopedic spine physician in Springfield is not comfortable doing anything with me expecially since I have implants in my spine. My new orthopedic spine doctor has decided to send me to a new spine specialist in St. Louis. I met with the new orthopedic spine doctor in St. Louis. After discussing what has been done and what may need to be done we are moving forward with sending me to an allergy doctor first. The allergy specialist is going to have allergy testing done to see if I may be allergic to the metals in the implants. If I am it can prevent the implant from fusing and cause an inflamatory response systemically which could be the reason for the nerve issues I am having in my arms, elbows and wrists. Once I get the results from the allergist we will know what the net steps are. If I am not allergic to the metals in the implants that were put in my cervicle and lumbar spine then he will send me back to the orthopedic spine physician to put in a plate to fuse C5/C6 which did not fuse. I also have developed some foraminal narrowing at C4/C5 that he will fix when he puts in the additonal plate to fuse my cervicle spine. The next cervicle surgery will have to be done by gong through the back of my neck. This means going through many more muscles and making the recovery time longer than before. Once I have healed from this, 3 months or more, he will send me to ortho in Springfield to have surgery to release the nerves in my wrists, bilateral carpal tunnel surgery, trigger finger surgery and elbow. They want to try an injection in my shoulder but I had really bad side effects last time I had an injection into my shoulder. The doctor in St. Louis wants to find out what drugs were used last time and see if there is someother drug we could try injecting instead. Now worst case scenereo is that if the alergy tests come back positive for an alergy to the metals in the implants then I have a very big problem. The only way for my nerve problems to stop getting worse is to remove the implants. Of course you can not remove the implants so the only way to remove the implants is to remove the entire bone. This of course is very complicated. Before any surgery can be done they need to find an implant product that I am not allergic to so they can put it in to fuse my spine. This is not only very complicated but the risks are high for having complications that could actually make me worse off than I am already. Needless to say I have a lot more issues and concerns to discuss with the orthopedic spine surgeon after my allergy testing. I did find out that the manufacturer ot the implants I had put in states in their pamphlet their implants can not be used in anyone allergic to the materials in used to make the implant. My neurosurgeon, whom I dearly respect, did not test me for allergies to the implants he put in. They are suposed to do this. I can only guess that since it is rare for someone to have a reaction he felt is was not necessary! Either way I am looking at more surgeries in my future and in the meantime I am suffering daily. My physicians have decided to put me on a fentynal patch and give me hydrocodone to take as needed to help control my pain. This is only giving me enough releif that I can function for several hours a day before needing to rest. By resting I mean doing nothing but changing positions every 15 minutes or so to reduce the pain. Some days, expecially after traveling to watch Trentin play hockey, I spend the next 2 days resting because the pain is to severe that I can not do anything. Overall my daily life is a struggle but I hide it well. Most people can not see the pain I am in, well somtimes you can. I try to at least put on make up when I leave the house and dress up well enought hat I look pretty normal. I do spend most of my time at home though. It is just easier to stay home because I know when I go out I will suffer. I should mention that my lymphadema is also getting out of control because I do not have the strength in my hands to put on my compressions. I am limited to using my lymphadema pump which helps but only minumly and it is a 1 hour treatment each time I do it. I must also do the treatments laying down for 1 hour which can be so painful that I end up terminating the treatment early. Through all of this I am grateful to be alive and watching my boys grow into handsome, polite and productive young men. I still beleive that God only gives us what we can handle and that he has a reason for everything. I certainly don’t understand his reasoning but I accept it. I know that one day there may be medical advancements that will cure all that I suffer from. I know that I have learned what it means to appreciate life, family and just being able to wake up each morning and put both feet on the ground. I have truly been blessed with the greatest and most amazing friends and family who have always been there to support me. I just wish I could understand why I was chosen to experience all of this. I pray that my words can help offer comfort to others who may be suffering. I encourage others who are suffering for any reason to continue to hold on to their faith. To be thankful for what they have and for being alive. Never let your problems take over. Keep positive, stay strong, know that medical advancements are occuring every day. Lean on your family and friends when you need to. We all have those days when we are feeling a little down or just plain tired of dealing with your troubles. This is when your faith, family and friends can assist. ON the good days just be appreciative and know that this too will pass. God bless you all. I hope this reaches everone who has been asking what is going on. I love you all.



4 responses

20 11 2016

Prayers for you always Patty. Love your positivity you are truely me hero. Your boys are so very lucky to have you as a mother and a fighter. Couldn’t set a better example for them and all of us. God bless. Love you always

20 11 2016
Patti Kain

Praying for you Patty. Sure hate to read how much pain you are constantly having, God bless you!

20 11 2016
Gail Clodfelter

Sorry you are going through all of this terrible pain and impairment right now Patty. I’ll keep the prayers coming for comfort and healing.

22 11 2016
Laurel Smith

So sorry to here you are not doing better 😦 I will keep you in my thoughts and prayers. I hope that they find a solution soon, so that all this terrible pain will be relieved. I wish there was something I could o to help you, but know that you are always in my thoughts.

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