We all know the feeling we have when a dear friend, or beloved family member is hurting, sick, depressed, or grieving. We feel helpless. We want to do something to help. In some ways, we need to do somethings tangible to feel useful, and let them know we love them. I understand this need. I am a "fixer" of problems. A trait perhaps most often considered a "man thing" to do. Over the years, I have learned to become a better listener, without listing out the steps to fix the problem (as I see it). I still find this difficult at times, as my mind works in a logical and sequential manner. I enjoy solving puzzles. When I hear a hurting friend say they are struggling, or they have a problem, I immediately think "well, let's fix the problem, then you can be happier, and in turn that makes me feel good to be useful."
I also have had moments when I am sharing my struggles with someone, and they pounce on me with a list things I can do to fix the problem. Over the years, people have bought me vitamins and supplements (or try to sell their brand to me). Given me medical or cook books. Sent me a mile high stack of articles and emails regarding treatment ideas or research. I am also learning something being on the other side of the "fixer." I am learning grace. To be very honest, my first response is irritation at times. I question why people would think I have not considered any of the options they are suggesting. I am a researcher by nature, and have read books, articles, blog posts, and many medical journals looking for answers over the years. I do eat a diet I feel is healthy for me. Perhaps the worst is my response to my several friends who sell the products they believe in, and have worked for them, when I think "No I don't want to buy product x, or I would have bought it." I feel guilty when people spend money to buy books and supplements, when I know that I will likely toss them. I have learned that people need to feel useful and they show love by trying to help fix the problem, just like I am guilty of doing.
One of the problems with being a "fixer" is that it is a way to make ourselves feel better. We feel the need to help, so we do, but in a way we think might be helpful instead of finding out what would actually be helpful to the individual suffering. I have come to understand that feeling of helplessness. I know that I have so many wonderful friends who care, and truly want to help me. They hurt because I hurt. I have to be gracious in my response to their offer of help, and hopefully they will be gracious in return if I seem to not take their advice. (Let me just take a minute here to ask forgiveness to those I have turned away with an unkind word. I am sorry. I am learning to think before I speak, but I am a sinner. I love you all, and would not want to hurt you, and I know you have a concern for me at the root of your offer.)
You all know how I love an analogy, although sometimes I have trouble thinking of a truly effective image, but I am going to try! I am sure you have been in a grocery store when you realize you are in the way of another shopper. You swerve to be considerate, thinking you will give preference to the other person, and patiently wait. But then, just as you swerve, so does the other shopper! You are both trying to do the "right" thing by helping the other person, but in the process you both have gotten in each other's way again! I have had this happen numerous times, and occasionally we have both then corrected our swerves and again ended up in the way. This situation is uncomfortable, and frequently ends in a nervous smile and one person saying "you go ahead, I won't move."
There is absolutely nothing wrong with wanting to help someone else, but perhaps we should take a minute to listen and identify how we can really be of use. For me, I would prefer someone just say "how can I help?" If I need a ride, or someone to grab a prescription, or mail a package for me, I will ask those whom have offered to help in the ways I need. Some people may not have a tangible way that they need help, maybe a kind word or card, and a listening ear without judgment, is the best "fix" you can give them. Prayer is always a wonderful gift! When we serve others the way they want to be served, instead of in the way we want to serve them, we avoid the nervous smile. We walk together, instead of one of us stepping aside, and telling the other one to go ahead and pass by.
Hopefully, you understand that I am not upset with anyone, I am just trying to say that we could all do a better job of helping the hurting in a way they want/need to be helped, instead of a way that we think will solve the problem. The truth is there are not many things I haven't tried (at least for a time) and the only thing remotely useful thus far has been dietary changes. I lost weight, lowered my cholesterol and blood pressure, but I also continued to worsen with the neurological disease, so clearly it is not a cure-all. I am thankful that your aunt's neighbor, or your cousin's best friend tried a certain diet/vitamin/doctor and got much better. I really am glad to hear that, but I also know that all our bodies are very different, our diagnoses are not the same, and a "one size fits all" approach does not work. When people ask about my dietary changes I tell them, but I do say "it worked for me, but I doubt it will work for everyone." This may be a whole different post, but just the fact they call it "practicing medicine" gives us a glimpse into the difficulty of how different people's bodies respond differently to the same health issue. This is why you can have many people with a herniated disc, and have them all have different outcomes. One gets better, or maybe never has any pain. One needs some therapy, a steroid injection and takes a few months to feel better. Another may need surgery or may be permanently disabled. Doctors tell me half the population would have a herniated disc show up on an MRI, but most never know it because they feel no pain! I am sure you can begin to see the difficulties with treating every person with the same plan!
At the end of the day, hopefully we can all learn to love less selfishly, pray more diligently, and extend grace more consistently, growing more and more each day to reflect Jesus in our lives. I love you all, and am so thankful for your prayers! 💜
Until Next Time~
Shari
Saturday, August 11, 2018
Thursday, August 9, 2018
Lost In Space
I thought I would try to write a short post, since I have been very wordy recently! I mentioned the sensory and motor nerve issues that were discovered on my tests in yesterday's post. I have been thinking about the doctor explaining this all to us.
Tests showed some motor nerve involvement. This would cause weakness, and muscle atrophy, which is why I fatigue quickly, and can't walk as far as I used to. There is also some demyelination. Myelin is the protective covering over your nerves. It is like the outside plastic sheath on electrical wires. When nerves show signs of demyelination it means that the protective coating is being destroyed by the disease process. Just like a short in an electrical wire, without the coating on the nerves, the signals slow or stop and cannot pass correctly along the nerve, getting lost along the way.
My tests also show sensory nerve damage. In fact, my testing shows that this part is the worst part of my particular case. The doctor said it was one of the worst sensory exams he has done. Sensory nerves help you feel hot or cold. They allow you to feel rough and smooth surfaces. They enable you to walk, and feel the ground under your feet. My legs are numb from my toes to my hips. So much so that I have burned myself in the shower without realizing it. One of the biggest problems with not having much feeling in your limbs, is the difficulty your brain has trying to communicate properly with them. I cannot always tell where my feet are in space. Proprioception is the brain's ability to have a sense of the position of all our body parts as we move. It usually lets us know how hard we are pushing down, or weight bearing.
Because of all of this, I am a bit "lost in space." I start to take a step forward, and instead I lose my balance and end up side-stepping to try to stop from falling (danger Will Robinson!). I end up going in a direction that I did not intend to go, and THAT sums up our life right now. It probably seems like a lot of your lives too. We think we are headed in one direction (at work or home, perhaps medically or relationally), when we realize we have had to do a couple quick side steps to stop from falling. I went to Mayo thinking that we would get answers about our future (learn more about my prognosis), and came home questioning our past.
Proverbs 16:9 reminds us that "The heart of man plans his way, but the Lord establishes his steps." We may feel like we are stumbling around. It may seem like we are falling and side-stepping instead of heading in the direction we should be going, but God has ordained our steps. We may not feel like we are on a straight path. Our idea of straight may be different from the Lord's. God's ways are higher than ours. His purposes mightier. We are to trust in the Lord with all our heart, and not lean on our understanding, but in all our ways acknowledge Him. If we do, He promises us to make our paths straight. (Proverbs 3:5-6)
I have said many, many times that this is not a path I would have ever chosen. I don't think anyone in their right mind would sign up for this, but I believe with all my heart, that I am walking this road for God's glory and my good. I am thankful for His loving discipline, and the Spirit's leading and guiding. I am grateful that He has begun teaching me patience, love and compassion. I am praying that God would graciously open your eyes to His truth, open your heart to His Son, and give you faith to trust that He is making our crooked paths straight.
Until Next Time~
Shari
Tests showed some motor nerve involvement. This would cause weakness, and muscle atrophy, which is why I fatigue quickly, and can't walk as far as I used to. There is also some demyelination. Myelin is the protective covering over your nerves. It is like the outside plastic sheath on electrical wires. When nerves show signs of demyelination it means that the protective coating is being destroyed by the disease process. Just like a short in an electrical wire, without the coating on the nerves, the signals slow or stop and cannot pass correctly along the nerve, getting lost along the way.
My tests also show sensory nerve damage. In fact, my testing shows that this part is the worst part of my particular case. The doctor said it was one of the worst sensory exams he has done. Sensory nerves help you feel hot or cold. They allow you to feel rough and smooth surfaces. They enable you to walk, and feel the ground under your feet. My legs are numb from my toes to my hips. So much so that I have burned myself in the shower without realizing it. One of the biggest problems with not having much feeling in your limbs, is the difficulty your brain has trying to communicate properly with them. I cannot always tell where my feet are in space. Proprioception is the brain's ability to have a sense of the position of all our body parts as we move. It usually lets us know how hard we are pushing down, or weight bearing.
Because of all of this, I am a bit "lost in space." I start to take a step forward, and instead I lose my balance and end up side-stepping to try to stop from falling (danger Will Robinson!). I end up going in a direction that I did not intend to go, and THAT sums up our life right now. It probably seems like a lot of your lives too. We think we are headed in one direction (at work or home, perhaps medically or relationally), when we realize we have had to do a couple quick side steps to stop from falling. I went to Mayo thinking that we would get answers about our future (learn more about my prognosis), and came home questioning our past.
Proverbs 16:9 reminds us that "The heart of man plans his way, but the Lord establishes his steps." We may feel like we are stumbling around. It may seem like we are falling and side-stepping instead of heading in the direction we should be going, but God has ordained our steps. We may not feel like we are on a straight path. Our idea of straight may be different from the Lord's. God's ways are higher than ours. His purposes mightier. We are to trust in the Lord with all our heart, and not lean on our understanding, but in all our ways acknowledge Him. If we do, He promises us to make our paths straight. (Proverbs 3:5-6)
I have said many, many times that this is not a path I would have ever chosen. I don't think anyone in their right mind would sign up for this, but I believe with all my heart, that I am walking this road for God's glory and my good. I am thankful for His loving discipline, and the Spirit's leading and guiding. I am grateful that He has begun teaching me patience, love and compassion. I am praying that God would graciously open your eyes to His truth, open your heart to His Son, and give you faith to trust that He is making our crooked paths straight.
Until Next Time~
Shari
Wednesday, August 8, 2018
Holding Pattern
I am currently sitting in a quiet corner at Mayo Clinic, which is a hard thing to find around here, looking out the windows, watching the world go by. We just finished a late lunch, after I had been fasting for a test all day, and I am now enjoying my first cup of coffee for the day at 2 pm. Since my last post, it has been a whirlwind of tests and appointments. I still have a bit of a spinal headache and low back pain from yesterday's spinal tap, mixed with this mornings test that was uncomfortable, then the fasting before another hour and a half in an MRI tube (third time in an MRI machine since last Thursday), all tipped the scales this morning for the inevitable meltdown. This trip has been exhausting, both physically and emotionally, and stressful, both mentally and financially. I finally needed to go into a bathroom and have a good cry.
First, can I just say how truly thankful I am for all the texts, and emails, and FB messages/comments sending encouragement and letting me know you are praying. It has been a real blessing to know that others are thinking of me and praying for me, even when I have been at the end of my rope, too tired to offer up a prayer of my own beyond crying, "Lord, help me." So thank you all!
Next, I just want to say, if it has ever been suggested that you should come to Mayo Clinic for any medical issue you are dealing with, DO IT! I was not completely sold on the idea. I worried it would just be an expensive waste of time. While it hasn't been cheap, it was a great decision to come. They run this place with more precision than the military, more compassion and friendliness than any local hospital, and seem eager to learn from any mistakes. We only had one issue, which lead to the 3rd trip to the MRI tube, and it got the Neurology, Radiology, and Patient Experience teams, along with the chairs of both departments, to communicate what the issue was, why it went wrong, how to fix it. Then they informed us of the loop hole they found in a new computer system that caused the miscommunication. They are working to fix it, and plan to follow up with us in a couple weeks to let us know what solution was implemented to make sure it doesn't happen again. WOW!
Also, if you stop moving anywhere for more than a brief minute, a volunteer or passing staff member is sure to inquire if you are lost and need directions. It really has been remarkable! Like 5-star hotel service, but in a medical setting. There is NO gap in medical records communication either. Their portal (or app) gives you complete access to tests results, reports, doctor notes, and everything in between, in a very short time. I had some of the spinal tap lab results available in my portal before I even was allowed to get up off the table!
Now, I will give you the easy version of where we stand right now (I will finish up today with the detailed medical version in the next section). If you read the last post, you know we got some difficult news to process. While I have undergone several more tests, and officially had my consultation in the office with Dr Dyck, we haven't found out much more in terms of definitive diagnosis, as they are awaiting the pathology slides from Northwestern Hospital. That can take a few weeks, so we are in a holding pattern. They really want to see those slides, and possibly do their own biopsy, before officially confirming the diagnosis. After those last few steps, they will give me the prognosis for my case, since this disease can vary in degree of severeness.
So, CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) has a close sibling. They are in the same family, share many of the same physical traits, and mannerisms, but like any family member, there are many differences in personality traits. That is the best way I can describe the alternative diagnosis of CISP (Chronic Inflammatory Sensory Polyradiculopathy) They are so similar, they are hard for us to even tell apart, like identical twins. The doctors, like the parents of twins, seem to clearly see the differences, while we see identical ones. In the end, it doesn't really matter, since they are treated in the same manner, and the doctor says I either have a non-pure form of CISP or a non-pure form of CIDP, the biopsy should push them over the edge towards one or the other. Which leads to our return visit in the middle of September, when it is likely they will do a biopsy, and we will go home with the final verdict, and treatment plan. In the meantime, I appreciate your continued prayers for strength and wisdom.
As for the rheumatological and chronic pain issues, the rheumatologist does agree that I am in remission from whatever diagnosis I had back in 1998. I have been off all of those meds since around 2009, and was feeling pretty good for a couple years. I do have constant neck and back pain, and testing shows worsening of the degenerative disc disease. She did say that it was a early onset, since this much degeneration is something normally seen in older patients. Our daughter was diagnosed with it at age 17. There is a genetic predisposition in some people, making them more prone to an early onset form, and it can become debilitating. Additionally, the change in my walking gait since the "tumor" surgery is contributing to my pain and worsening degeneration. I was referred to a specialist, but that appointment will also have to wait for our return trip. I just wanna go home (and we will soon do just that!). My general neurologist, Dr Boes (pronounced "base") added me to the end of his day at 5:30. He will have the MRI reports and scans that I had this morning by then, and be able to give us the final game plan, and answer remaining questions. We will be sleeping in our own bed tonight, although it may be after midnight by the time we get there! I am still excited to be heading home! Yay!
For all the medical nerds like me who are reading, I can give you a few more details: 😃
First, can I just say how truly thankful I am for all the texts, and emails, and FB messages/comments sending encouragement and letting me know you are praying. It has been a real blessing to know that others are thinking of me and praying for me, even when I have been at the end of my rope, too tired to offer up a prayer of my own beyond crying, "Lord, help me." So thank you all!
Next, I just want to say, if it has ever been suggested that you should come to Mayo Clinic for any medical issue you are dealing with, DO IT! I was not completely sold on the idea. I worried it would just be an expensive waste of time. While it hasn't been cheap, it was a great decision to come. They run this place with more precision than the military, more compassion and friendliness than any local hospital, and seem eager to learn from any mistakes. We only had one issue, which lead to the 3rd trip to the MRI tube, and it got the Neurology, Radiology, and Patient Experience teams, along with the chairs of both departments, to communicate what the issue was, why it went wrong, how to fix it. Then they informed us of the loop hole they found in a new computer system that caused the miscommunication. They are working to fix it, and plan to follow up with us in a couple weeks to let us know what solution was implemented to make sure it doesn't happen again. WOW!
Also, if you stop moving anywhere for more than a brief minute, a volunteer or passing staff member is sure to inquire if you are lost and need directions. It really has been remarkable! Like 5-star hotel service, but in a medical setting. There is NO gap in medical records communication either. Their portal (or app) gives you complete access to tests results, reports, doctor notes, and everything in between, in a very short time. I had some of the spinal tap lab results available in my portal before I even was allowed to get up off the table!
Now, I will give you the easy version of where we stand right now (I will finish up today with the detailed medical version in the next section). If you read the last post, you know we got some difficult news to process. While I have undergone several more tests, and officially had my consultation in the office with Dr Dyck, we haven't found out much more in terms of definitive diagnosis, as they are awaiting the pathology slides from Northwestern Hospital. That can take a few weeks, so we are in a holding pattern. They really want to see those slides, and possibly do their own biopsy, before officially confirming the diagnosis. After those last few steps, they will give me the prognosis for my case, since this disease can vary in degree of severeness.
So, CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) has a close sibling. They are in the same family, share many of the same physical traits, and mannerisms, but like any family member, there are many differences in personality traits. That is the best way I can describe the alternative diagnosis of CISP (Chronic Inflammatory Sensory Polyradiculopathy) They are so similar, they are hard for us to even tell apart, like identical twins. The doctors, like the parents of twins, seem to clearly see the differences, while we see identical ones. In the end, it doesn't really matter, since they are treated in the same manner, and the doctor says I either have a non-pure form of CISP or a non-pure form of CIDP, the biopsy should push them over the edge towards one or the other. Which leads to our return visit in the middle of September, when it is likely they will do a biopsy, and we will go home with the final verdict, and treatment plan. In the meantime, I appreciate your continued prayers for strength and wisdom.
As for the rheumatological and chronic pain issues, the rheumatologist does agree that I am in remission from whatever diagnosis I had back in 1998. I have been off all of those meds since around 2009, and was feeling pretty good for a couple years. I do have constant neck and back pain, and testing shows worsening of the degenerative disc disease. She did say that it was a early onset, since this much degeneration is something normally seen in older patients. Our daughter was diagnosed with it at age 17. There is a genetic predisposition in some people, making them more prone to an early onset form, and it can become debilitating. Additionally, the change in my walking gait since the "tumor" surgery is contributing to my pain and worsening degeneration. I was referred to a specialist, but that appointment will also have to wait for our return trip. I just wanna go home (and we will soon do just that!). My general neurologist, Dr Boes (pronounced "base") added me to the end of his day at 5:30. He will have the MRI reports and scans that I had this morning by then, and be able to give us the final game plan, and answer remaining questions. We will be sleeping in our own bed tonight, although it may be after midnight by the time we get there! I am still excited to be heading home! Yay!
For all the medical nerds like me who are reading, I can give you a few more details: 😃
- MRI's all showed my peripheral nerves and nerve roots are inflamed, particularly at L2-3, L3-4. This inflammation was seen on the original 2009 MRI at Northwestern which the report labeled as a likely nerve sheath tumor, but also said they could not rule out an inflammatory neuropathy (oh, how I wish I knew this then). The inflammation has returned to the remaining sections of the left femoral nerve, and worsened in other nerves. As a very cool side note, the portal/Mayo app includes the actual images of the MRI scans! That is way better than asking for a disc to take home and look at!
- The EMG was abnormal, indicating both the demyelination of nerves in upper and lower extremities, and confirming that this is not purely sensory, but also a motor neuropathy. That being said, CISP normally has a mostly sensory presentation, and normal EMGs, where CIDP presents with mostly motor involvement, less sensory, but EMGs that look like mine.
- Spinal tap showed elevated protein and albumin but lower IgG levels. Elevated protein is common in CIDP, but usually at a very elevated rate above 200. Mine is 69, normal is 0-35. Labs were mostly normal, which is good since a lot of them were for other diagnoses like: POEMS syndrome, pernicious anemia, and neoplastic disease. A few of the numbers were slightly off, but nothing of consequence.
- Somatosensory Evoked Potential and Quantitative Sensory testing were both abnormal, but apparently in an expected way for either CIDP or CISP. They again show upper extremity involvement.
- Still awaiting brain MRI results, and did not have the neuro-ophthalmologist appointment yet. This is more precautionary than anything, I think, because of the mild optic neuritis I had a couple months ago. We will have this last MRI result at our 5:30 appointment today, and the eye exam at the follow up trip in September.
That about sums it up for now! I really am sorry for all the super long posts lately. You people rock! I know many of you have read every word, and I am impressed with your persistence.
We will be coming back to Mayo. We are fairly certain there will not be multiple return trips, but then again I came here with hotel reservations in NY, thinking we would only be here a few days (those darn expectations). Of course, I also thought I had a tumor AND a neurological disorder, and am leaving here with doctors 99% convinced that I have had a neurological disease since 2004 when symptoms first started, and no tumor ever, so things do change. I am leaving here with no spoons, and a lot of emotions to work through, but I am leaving here encouraged by family and friends. I am thankful for a husband who loves me, and is the strongest person I know. He masterfully pushes my wheelchair through a crowd, while pulling a suitcase, and does it (mostly) without complaint. I am so thankful for my loving Savior who strengthens me when I am at my weakest, who uses me in waiting rooms, and who lovingly and graciously keeps a smile on my face through the dark of valleys. Praise be to God!
Until Next Time~
Shari
P.S. I forgot to mention that I got to take a Tesla for a spin. The T3 Tesla MRI machine, to be exact :) Supposedly stronger magnets for better imaging.
P.S. I forgot to mention that I got to take a Tesla for a spin. The T3 Tesla MRI machine, to be exact :) Supposedly stronger magnets for better imaging.
Saturday, August 4, 2018
Hard to Put Into Words
Chad and I are relaxing near Minneapolis for the weekend before returning to Mayo on Monday for more appointments and tests. Since I last posted, we met with a rheumatologist (who was wonderful). She ordered some more labs and another MRI. She thinks the latest diagnosis for all my spine and neck pain, may be accurate as an inflammatory arthritis, but it could also be an early onset (possibly genetic) form of osteoarthritis/degenerative disc disease. If it is indeed an inflammatory arthritis, they will get me in to a specialist who only treats patients with that diagnosis. If it turns out to be the other degenerative disc disease, which is not an autoimmune disease, then pain management is my only treatment to try and maintain a good quality of life.
We arrived to the "waitlist checker" line at 6:30 am on Friday to try and get the EMG done sooner (this was needed before we could try to get the other specialist appointment date sooner). We were 4th in line. The first "checker" as they are called, arrived at 5:30 am!! The first checker was called back for testing at 8 am, and providentially, another one had to leave. That left just one other person ahead of me, so I was feeling hopeful. The next checker was called around 10 am, and I knew that I was next. I prayed for another opening before the end of the day. Just before 10:30 am, my name was called, and I was headed back for the test. It didn't go quite as expected, keep reading for all the details. Sorry, but this post will be a long one.
While we waited, a couple from western Minnesota sat next to us. We struck up a conversation with them, and thoroughly enjoyed talking to them. We had a lot in common. He worked in the construction industry like Chad does. She has been a special education teaching assistant, for the past 18 years, which is similar to the work our daughter, Katherine, does. During our talk, we both mentioned attending church on Sunday, so I asked where they went to church. We had a great conversation about faith, and the importance of preaching God's Word truthfully and un-apologetically. We also discussed the medical issues that brought us to Mayo. They were going through some similar testing, but sadly it seems the husband may have a rare and deadly form of cancer that affects the nervous system. She explained this to us through tears as he was in doing his test. We were able to pray with her in the waiting room. I love that Christ binds believers together as a family, no matter where we live, or what church we go to, and am thankful we met and could provide comfort to each other for a brief time while waiting.
It has been very interesting to see the melting pot of people from around the world in the waiting areas, but it doesn't end there. I have met doctors from New Zealand, India and Portugal that are visiting Mayo for specialized training, as they shadow some of the experts in their fields of practice. The entire downtown Rochester area (that is Rochester in Minnesota, not in New York haha) is connected with subway tunnels, and bridges, and there are wheelchair ramps and elevators everywhere! Even the smallest of restaurants has elevators to get you to the seating areas, or bathroom. That part has been wonderful! I can't think of any other place I have been that is like this place. It really is a fully accessible, "mini city" around Mayo Clinic, where you know almost everyone you see is here for medical treatment. The Mayo Clinic blue wheelchairs are being pushed all around the area, and I have seen some very sick people. We are all here for one thing: answers. We all have the same hope to get a diagnosis and a treatment plan to make us better. That provides a connection, that makes everyone a little nicer to each other in elevators and waiting rooms. The staff is also very friendly and compassionate. In Chicago, I frequently have a receptionist with an attitude, or who seems to hate their job or is having a bad day. I haven't had that experience here yet.
OK, so on with my testing story. I am laying on a table, waiting for the doctor to come in to start the EMG. A tall, 50-something, doctor walks in and says hello. He introduces his "shadow" who is the doctor from Portugal (mentioned above). He sits down and starts to type, but then stands up and leaves the room. I sit up to see if I can read what he was typing and I see that he entered his name under the physician heading "Dyck." When he comes back in, he explains he was shocked to see me today. He says he received a phone call the night before from the radiologist who told him that he needs to see my MRI scans. Dr. Dyck continues by saying he is very familiar with my name and case, because he spent the night reviewing my records. He had no clue that I would be a checker, and end up in his testing room the next morning. Oh wait, it gets better!
In 2013, when we had considered Mayo Clinic previously, I had been reading medical journal articles, and saw that a few of the ones that seemed to be most relevant in my case were all written by a Dr. James Dyck from Mayo. I did a lot of sleuthing, and found an email address from him from the medical school here where he does lectures, and I emailed him. So, as it turns out, I was as surprised as him that we ended up in that room together yesterday! Back in 2013, he asked the clinic to offer me an appointment, which they did, but it was like 8 or 9 months out, and we were worried about not starting treatment soon enough. We ended up deciding to not take the appointment, and go with the second opinion doctor at Northwestern, who comes to Chicago one day a month from Mayo. Leading us down the past 5 years pathway of trial and error treatment plans that lead me here to this room on this day. Again, I say providentially, as there are no such things as luck and coincidence.
I asked if he was Dr. James Dyck, and mentioned to him that I had written to him, and of course he gets thousands of requests, so he doesn't remember me, but I did learn that his father (same name) is the oldest doctor on staff at Mayo, now in his 90's! Dr. Dyck Sr. is the doctor that first identified, and named the disease CIDP, which has been mentioned before in my case. Dr Dyck Jr. performed the test, and because he was very interested in my case, and with the results he was getting, I had an almost 2 hour long test! He sent the nurse and staff to lunch, and stayed there with me, literally testing every muscle in my body, including my face (that was strange)! He refers to his father as Dr Dyck "The Greater" and himself as "The Lessor" :)
Since this post is already long, and there is a LOT of medical terminology to wade through, I will try to keep this short (hahahaha) and simple. (Friends- if you want a more detailed explanation, feel free to call over the weekend).
Dr Dyck had plenty of bad news.
There were more tears. Right now, I am not certain of anything, but the implications are staggering. If he is correct, I had a surgeon cut out 7 inches of a large nerve to my left leg to remove inflammation, and not a tumor, leaving me forever disabled (2009). That alone is bad enough, but sadly it doesn't end here. I had a second surgery to try to reconnect the nerves that were cut out in 2010. The first surgery caused my gait issues which have led to a knee replacement (2011), a tarsal tunnel nerve release in my ankle (2012), increased back and neck pain because of the spinal arthritis, as walking has been so much more difficult since 2009. I then developed a neuroma along the original incision, and had to have another surgery to fix that (2013). (For the sake of shortness, I will just say that we had already known the original surgeon did not do things he should of done to aid in my recovery, which very well might have enabled the nerve transfer to keep the muscle functioning, leaving my leg a bit weaker, but not paralyzed).
CIDP is also not the best thing to be diagnosed with, but in some ways the fact that he feels many of the nerve issues I have can be explained by one diagnosis, and not many different diagnoses that are not related (which is what we keep hearing) sounds good to me. What doesn't sound good is thinking through that last paragraph. It is almost too much to think about. It has been a struggle the last 24 hours to stop my mind from pondering the "what ifs" even though I know that is not helpful. There is some sadness, and some anger we are dealing with, but Chad and I are both trying to not let ourselves go there. We can't get trapped in the past. My recent posts have discussed closely monitoring our expectations, and not worrying about tomorrow. Today is the day we need to be present in, and today I am reminding myself to also not live in the past. Imagining what might of been won't change anything but my attitude. It will only create anger and regret and bitterness.
I still have many more appointments, and will likely have to stay longer and/or come back in a few weeks, especially if they do the nerve biopsy. In the meantime, I will try to not look backwards, and not worry about what the ultimate outcome will be. I will try to focus on one day at a time. Praying you all can do the same.
Prayer requests-
1. Monday morning we plan to be in the checker line early again, to try to see the peripheral nerve surgeon instead of waiting until August 23rd. Please pray we are able to get in sooner, even if that means staying an extra day or two now.
2. Tuesday, if you pray for anything, please pray for me on Tuesday! I have a spinal tap scheduled at 7:45 am and a sensory test at 3 pm. I cannot have any pain meds, no muscle relaxers, or CBD oil, nothing, not even Tylenol for 12 hours before the sensory test. I have not gone more than 4 or 5 hours with meds in months because of pain, and it has been worse with the hotel bed, doing tests and sitting in the waiting room. After the spinal tap, I have to lie flat for 2 hours on the exam table to allow the hole to close, which I assume will be uncomfortable by itself.
You are all caught up, and I will continue to update everyone who is interested as we know more. At this point, I am guessing we won't know much else for a couple days. I am thankful for each of you who continue to pray, it means the world to me 💜
Until Next Time~
Shari
If you would like to know more about what CIDP is, you can read more here.
We arrived to the "waitlist checker" line at 6:30 am on Friday to try and get the EMG done sooner (this was needed before we could try to get the other specialist appointment date sooner). We were 4th in line. The first "checker" as they are called, arrived at 5:30 am!! The first checker was called back for testing at 8 am, and providentially, another one had to leave. That left just one other person ahead of me, so I was feeling hopeful. The next checker was called around 10 am, and I knew that I was next. I prayed for another opening before the end of the day. Just before 10:30 am, my name was called, and I was headed back for the test. It didn't go quite as expected, keep reading for all the details. Sorry, but this post will be a long one.
While we waited, a couple from western Minnesota sat next to us. We struck up a conversation with them, and thoroughly enjoyed talking to them. We had a lot in common. He worked in the construction industry like Chad does. She has been a special education teaching assistant, for the past 18 years, which is similar to the work our daughter, Katherine, does. During our talk, we both mentioned attending church on Sunday, so I asked where they went to church. We had a great conversation about faith, and the importance of preaching God's Word truthfully and un-apologetically. We also discussed the medical issues that brought us to Mayo. They were going through some similar testing, but sadly it seems the husband may have a rare and deadly form of cancer that affects the nervous system. She explained this to us through tears as he was in doing his test. We were able to pray with her in the waiting room. I love that Christ binds believers together as a family, no matter where we live, or what church we go to, and am thankful we met and could provide comfort to each other for a brief time while waiting.
It has been very interesting to see the melting pot of people from around the world in the waiting areas, but it doesn't end there. I have met doctors from New Zealand, India and Portugal that are visiting Mayo for specialized training, as they shadow some of the experts in their fields of practice. The entire downtown Rochester area (that is Rochester in Minnesota, not in New York haha) is connected with subway tunnels, and bridges, and there are wheelchair ramps and elevators everywhere! Even the smallest of restaurants has elevators to get you to the seating areas, or bathroom. That part has been wonderful! I can't think of any other place I have been that is like this place. It really is a fully accessible, "mini city" around Mayo Clinic, where you know almost everyone you see is here for medical treatment. The Mayo Clinic blue wheelchairs are being pushed all around the area, and I have seen some very sick people. We are all here for one thing: answers. We all have the same hope to get a diagnosis and a treatment plan to make us better. That provides a connection, that makes everyone a little nicer to each other in elevators and waiting rooms. The staff is also very friendly and compassionate. In Chicago, I frequently have a receptionist with an attitude, or who seems to hate their job or is having a bad day. I haven't had that experience here yet.
OK, so on with my testing story. I am laying on a table, waiting for the doctor to come in to start the EMG. A tall, 50-something, doctor walks in and says hello. He introduces his "shadow" who is the doctor from Portugal (mentioned above). He sits down and starts to type, but then stands up and leaves the room. I sit up to see if I can read what he was typing and I see that he entered his name under the physician heading "Dyck." When he comes back in, he explains he was shocked to see me today. He says he received a phone call the night before from the radiologist who told him that he needs to see my MRI scans. Dr. Dyck continues by saying he is very familiar with my name and case, because he spent the night reviewing my records. He had no clue that I would be a checker, and end up in his testing room the next morning. Oh wait, it gets better!
In 2013, when we had considered Mayo Clinic previously, I had been reading medical journal articles, and saw that a few of the ones that seemed to be most relevant in my case were all written by a Dr. James Dyck from Mayo. I did a lot of sleuthing, and found an email address from him from the medical school here where he does lectures, and I emailed him. So, as it turns out, I was as surprised as him that we ended up in that room together yesterday! Back in 2013, he asked the clinic to offer me an appointment, which they did, but it was like 8 or 9 months out, and we were worried about not starting treatment soon enough. We ended up deciding to not take the appointment, and go with the second opinion doctor at Northwestern, who comes to Chicago one day a month from Mayo. Leading us down the past 5 years pathway of trial and error treatment plans that lead me here to this room on this day. Again, I say providentially, as there are no such things as luck and coincidence.
I asked if he was Dr. James Dyck, and mentioned to him that I had written to him, and of course he gets thousands of requests, so he doesn't remember me, but I did learn that his father (same name) is the oldest doctor on staff at Mayo, now in his 90's! Dr. Dyck Sr. is the doctor that first identified, and named the disease CIDP, which has been mentioned before in my case. Dr Dyck Jr. performed the test, and because he was very interested in my case, and with the results he was getting, I had an almost 2 hour long test! He sent the nurse and staff to lunch, and stayed there with me, literally testing every muscle in my body, including my face (that was strange)! He refers to his father as Dr Dyck "The Greater" and himself as "The Lessor" :)
Since this post is already long, and there is a LOT of medical terminology to wade through, I will try to keep this short (hahahaha) and simple. (Friends- if you want a more detailed explanation, feel free to call over the weekend).
Dr Dyck had plenty of bad news.
1. My EMG and MRI were clearly abnormal.
2. He said that the nerve tumor they removed in 2009 should not have been removed, since it was benign and removing it would make me more disabled than leaving it. I have heard this from 2 other doctors.
3. He suspects based on the current testing that I do indeed have CIDP (he is still waiting for other testing, and perhaps a biopsy to definitively diagnosis this, but he seems fairly confident.)
4. Based on everything he has seen in my case, and the fact that he has seen 6 other patients who were wrongly diagnosed with a neurofibroma, but instead truly had CIDP, he suspects that I never had a tumor. He thinks it was CIDP all along. He has requested the pathology slides from that 2009 tumor resection to see them for himself, but again, he thinks he will find that the pathology and diagnosis were wrong.
5. Recent nerve issues in my arm are also likely the beginnings of CIDP in my upper extremities.
There were more tears. Right now, I am not certain of anything, but the implications are staggering. If he is correct, I had a surgeon cut out 7 inches of a large nerve to my left leg to remove inflammation, and not a tumor, leaving me forever disabled (2009). That alone is bad enough, but sadly it doesn't end here. I had a second surgery to try to reconnect the nerves that were cut out in 2010. The first surgery caused my gait issues which have led to a knee replacement (2011), a tarsal tunnel nerve release in my ankle (2012), increased back and neck pain because of the spinal arthritis, as walking has been so much more difficult since 2009. I then developed a neuroma along the original incision, and had to have another surgery to fix that (2013). (For the sake of shortness, I will just say that we had already known the original surgeon did not do things he should of done to aid in my recovery, which very well might have enabled the nerve transfer to keep the muscle functioning, leaving my leg a bit weaker, but not paralyzed).
CIDP is also not the best thing to be diagnosed with, but in some ways the fact that he feels many of the nerve issues I have can be explained by one diagnosis, and not many different diagnoses that are not related (which is what we keep hearing) sounds good to me. What doesn't sound good is thinking through that last paragraph. It is almost too much to think about. It has been a struggle the last 24 hours to stop my mind from pondering the "what ifs" even though I know that is not helpful. There is some sadness, and some anger we are dealing with, but Chad and I are both trying to not let ourselves go there. We can't get trapped in the past. My recent posts have discussed closely monitoring our expectations, and not worrying about tomorrow. Today is the day we need to be present in, and today I am reminding myself to also not live in the past. Imagining what might of been won't change anything but my attitude. It will only create anger and regret and bitterness.
I still have many more appointments, and will likely have to stay longer and/or come back in a few weeks, especially if they do the nerve biopsy. In the meantime, I will try to not look backwards, and not worry about what the ultimate outcome will be. I will try to focus on one day at a time. Praying you all can do the same.
Prayer requests-
1. Monday morning we plan to be in the checker line early again, to try to see the peripheral nerve surgeon instead of waiting until August 23rd. Please pray we are able to get in sooner, even if that means staying an extra day or two now.
2. Tuesday, if you pray for anything, please pray for me on Tuesday! I have a spinal tap scheduled at 7:45 am and a sensory test at 3 pm. I cannot have any pain meds, no muscle relaxers, or CBD oil, nothing, not even Tylenol for 12 hours before the sensory test. I have not gone more than 4 or 5 hours with meds in months because of pain, and it has been worse with the hotel bed, doing tests and sitting in the waiting room. After the spinal tap, I have to lie flat for 2 hours on the exam table to allow the hole to close, which I assume will be uncomfortable by itself.
You are all caught up, and I will continue to update everyone who is interested as we know more. At this point, I am guessing we won't know much else for a couple days. I am thankful for each of you who continue to pray, it means the world to me 💜
Until Next Time~
Shari
If you would like to know more about what CIDP is, you can read more here.
Thursday, August 2, 2018
Uh-Oh!
Ok, ok, I know this will be hard to believe given my usual attention to detail and rigid organizational habits, but I made a mistake. A big mistake. The kind that causes some serious issues, and tears, lots of tears.
As it turns out, about 2 months ago when I got the appointment at Mayo Clinic, I booked hotels for our stay. We were told to plan to stay 3-7 business days for appointments (they are not open on weekends), and keep our travel plans as flexible as possible. So, we decided to stay in one of the hotels that connects to Mayo Clinic via the underground subway tunnels for the first 3 days. Then, we we're going to head to Minneapolis for my weekend off, and then back to the first hotel near Mayo for 3 more days. We figured we could cancel any days we didn't need, and were really hoping we did not need to add any more.
Hotels near Mayo run at full capacity nearly constantly, and are booked days, if not weeks in advance. After seeing the doctor yesterday, and getting the game plan together, it turns out our plans were very accurate. My final appointment for this trip is on Wednesday morning next week, so we can see the doctor, check out and drive home. No extra reservations needed. We do apparently need to come back once more, in about a month or so, which we did not know until yesterday, but I digress. So, what mistake did I make? Oh, wait until you hear this! (Some day in the future, we will get plenty of laughs out of telling this story, but right now it is #toosoon)
We arrived in Rochester, Minnesota on Tuesday evening. I strolled into the "Hilton Garden Inn Rochester Downtown" hotel, and gave them my name. The clerk searches and searches and asks if I am sure about the date and suggests that we might be at a different Hilton hotel nearby. I tell him, no I am sure my reservation is at the "Hilton Garden Inn Rochester Downtown" and have a confirmation email. Assured they must be making some mistake, I did not hesitate to whip out my phone and show him the confirmation number when he asked. I immediately noticed the expression on his face change, as he looks at me and says he found the problem.
Turns out we are at "Hilton Garden Inn Rochester Downtown" in Minnesota.
My room is booked at "Hilton Garden Inn Rochester Downtown" in New York.
Um.....
Now, THAT is a problem!! We are over 5 hours from home, there are no hotel rooms available near Mayo (none, and it is even harder when you need an accessible room!). To make matter worse (is that even possible?) I got a sweet deal, and saved us a bunch of money on our 3 day reservation by paying 30-days in advance with their non-refundable, non-transferable, non-cancellation policy option.
Um.....
So yeah, that is how our trip started. We spent at least an hour on phones, and laptops, scrambling to find somewhere to sleep (besides our car or a park bench). Thankfully, we did find a room! It does not have an accessible shower. It is not attached to Mayo's subway system, and therefore not as convenient, but we are not sleeping in the car at least. Praise God it is only 15 minutes away and didn't have to be further!
Hilton has also been trying to figure out a way to refund our money (although that hasn't happened yet), and they were able to transfer my New York reservations for next week, to a similar (but of course, more expensive room) here in Minnesota, which is MUCH closer to Mayo than New York! It is closer than our current hotel, and will have an accessible shower, so only these first 3 nights will be an issue.
Things aren't working out exactly as planned, that's for sure! I am grateful I was already working to manage my expectations!! Things worked out ok, but definitely not how I expected. I am praying that my stupidity might not cost us the 3-day stay cost in addition to the hotel we ended up at, so I hope they truly do refund the money.
We had my eval yesterday in neurology. The doctor ordered a bunch of tests. This morning, a boatload of blood was drawn for labs. This afternoon is the first of 4 MRIs. Then I have an EMG, a spinal tap, and consults with each: peripheral nerve specialist, rheumatologist, and neuro-ophthalmologist. Each specialist adds their testing to my schedule as needed.
Unfortunately, I cannot get in to one of the specialists until August 22nd. Tests are spread out over the next several days, with lots of free hours for us to sit around and get bored. When I do have an opening in my schedule, we can show up in the early morning hours at the specialist's office, try to get my name on a cancellation list, and then sit there all day, waiting to see if they will be able to work me into the schedule. We are REALLY hoping that we can make that work, instead of coming back in a few weeks. Most people who make it on the list are here by 6:30 am to get in line!! They take 4 or 5 names a day, and try to get them in, but there is no guarantee. You have to stay in their waiting room also. If they call your name, and you are not right there, you miss your chance. We will be able to be there tomorrow (Friday) and also Monday, since any appointments on those two days are scheduled in the evening.
Continued prayers for strength, lower pain levels, patience, and God's favor that we might get in to the peripheral nerve specialist before we come home. If that does not happen, I may make the trip back up here alone (or with any friends who may want to push my wheelchair around in exchange for free meals and share my hotel room.....I promise the room will not be in New York!)
Thank you all for praying, and sending encouraging texts, emails and messages! I am worn out already, and I have several more days to go.
Until Next Time~
Shari
As it turns out, about 2 months ago when I got the appointment at Mayo Clinic, I booked hotels for our stay. We were told to plan to stay 3-7 business days for appointments (they are not open on weekends), and keep our travel plans as flexible as possible. So, we decided to stay in one of the hotels that connects to Mayo Clinic via the underground subway tunnels for the first 3 days. Then, we we're going to head to Minneapolis for my weekend off, and then back to the first hotel near Mayo for 3 more days. We figured we could cancel any days we didn't need, and were really hoping we did not need to add any more.
Hotels near Mayo run at full capacity nearly constantly, and are booked days, if not weeks in advance. After seeing the doctor yesterday, and getting the game plan together, it turns out our plans were very accurate. My final appointment for this trip is on Wednesday morning next week, so we can see the doctor, check out and drive home. No extra reservations needed. We do apparently need to come back once more, in about a month or so, which we did not know until yesterday, but I digress. So, what mistake did I make? Oh, wait until you hear this! (Some day in the future, we will get plenty of laughs out of telling this story, but right now it is #toosoon)
We arrived in Rochester, Minnesota on Tuesday evening. I strolled into the "Hilton Garden Inn Rochester Downtown" hotel, and gave them my name. The clerk searches and searches and asks if I am sure about the date and suggests that we might be at a different Hilton hotel nearby. I tell him, no I am sure my reservation is at the "Hilton Garden Inn Rochester Downtown" and have a confirmation email. Assured they must be making some mistake, I did not hesitate to whip out my phone and show him the confirmation number when he asked. I immediately noticed the expression on his face change, as he looks at me and says he found the problem.
Turns out we are at "Hilton Garden Inn Rochester Downtown" in Minnesota.
My room is booked at "Hilton Garden Inn Rochester Downtown" in New York.
Um.....
Now, THAT is a problem!! We are over 5 hours from home, there are no hotel rooms available near Mayo (none, and it is even harder when you need an accessible room!). To make matter worse (is that even possible?) I got a sweet deal, and saved us a bunch of money on our 3 day reservation by paying 30-days in advance with their non-refundable, non-transferable, non-cancellation policy option.
Um.....
So yeah, that is how our trip started. We spent at least an hour on phones, and laptops, scrambling to find somewhere to sleep (besides our car or a park bench). Thankfully, we did find a room! It does not have an accessible shower. It is not attached to Mayo's subway system, and therefore not as convenient, but we are not sleeping in the car at least. Praise God it is only 15 minutes away and didn't have to be further!
Hilton has also been trying to figure out a way to refund our money (although that hasn't happened yet), and they were able to transfer my New York reservations for next week, to a similar (but of course, more expensive room) here in Minnesota, which is MUCH closer to Mayo than New York! It is closer than our current hotel, and will have an accessible shower, so only these first 3 nights will be an issue.
Things aren't working out exactly as planned, that's for sure! I am grateful I was already working to manage my expectations!! Things worked out ok, but definitely not how I expected. I am praying that my stupidity might not cost us the 3-day stay cost in addition to the hotel we ended up at, so I hope they truly do refund the money.
We had my eval yesterday in neurology. The doctor ordered a bunch of tests. This morning, a boatload of blood was drawn for labs. This afternoon is the first of 4 MRIs. Then I have an EMG, a spinal tap, and consults with each: peripheral nerve specialist, rheumatologist, and neuro-ophthalmologist. Each specialist adds their testing to my schedule as needed.
Unfortunately, I cannot get in to one of the specialists until August 22nd. Tests are spread out over the next several days, with lots of free hours for us to sit around and get bored. When I do have an opening in my schedule, we can show up in the early morning hours at the specialist's office, try to get my name on a cancellation list, and then sit there all day, waiting to see if they will be able to work me into the schedule. We are REALLY hoping that we can make that work, instead of coming back in a few weeks. Most people who make it on the list are here by 6:30 am to get in line!! They take 4 or 5 names a day, and try to get them in, but there is no guarantee. You have to stay in their waiting room also. If they call your name, and you are not right there, you miss your chance. We will be able to be there tomorrow (Friday) and also Monday, since any appointments on those two days are scheduled in the evening.
Continued prayers for strength, lower pain levels, patience, and God's favor that we might get in to the peripheral nerve specialist before we come home. If that does not happen, I may make the trip back up here alone (or with any friends who may want to push my wheelchair around in exchange for free meals and share my hotel room.....I promise the room will not be in New York!)
Thank you all for praying, and sending encouraging texts, emails and messages! I am worn out already, and I have several more days to go.
Until Next Time~
Shari
Subscribe to:
Posts (Atom)