Resolve and faith
Last month, I was pain free for the first time in FOUR years! As always, I still held up the seat belt off my leg but except for a spot on my hip bone that felt super bruised, I wanted to throw away the cane and Run and Dance and Climb something! It was awesome! My leg was totally numb hip to knee and I was ecstatic!But unfortunately I was instructed NOT to do much, and the numbness from the cortizone shot wore off after a few hours....But it firmly diagnosed Meralgia Paresthetica--thigh pain that is severe burning, tingling, aching, annoying as ever condition that has eluded us for years! (Yes, it can be caused by "skinny jeans" but that is the acute/mild version that will heal itself within hours to weeks. Definitely a fad that makes it hard to find pants that fit right...) But Drs still don't know what caused mine and what level of nerve damage--meaning they don't know if it will fully recover or not.
Some of the possibilities of how the nerve damage happened include:
gestational diabetes, maternity belt, pre-term labor, spinal/anesthesia hurt going in (I arched my back and complained as shocks went down my legs, but it was not re-done), surgical tray put on my left foot caused foot to "turn out" during surgery, many Dr's say it is a very low incision, OB Dr. cut farther left than previous scar, baby stuck/suctioned on left side, and OB Dr. arrived late, left early from surgery (Dr.s dad died Sat, funeral Tues, our surgery Wednesday, his medical practice ribbon cutting/open house immediately followed surgery) I have since learned from medical journals that all these could be factors...so I cal it the "perfect storm" of possibilities.
2008
The minute the anesthesia wore off my leg, it felt like someone was slicing it off at the hip!! I told the nurses I felt like I had a hip replacement, not knowing anything else to compare it to. It was like no pain I had ever experienced before, much WORSE than the c-section, and none of the prescription medications even touched it! (Bob and I didn't say much about the situation as we didn't know what happened) The nurses didn't want to send me home, but had no idea how to help. Receiving a priesthood blessing of healing, and after staying 4 days in the hospital, we went home, praying it would improve. It was a Saturday, we didn't know if insurance would cover me for the weekend, and baby had already been discharged, so we left praying and hoping for the best. Week after week, we got seemingly nowhere with Drs. until Dr. P, the pediatrician agreed to look at me and suggested the abdominal wall was hit during the surgery, could be nerve issues and that it will heal "in time."
2009
I went back to school in January, got around with a cane, drove around campus with a handicapped permit. After that semester, I saw another set of Dr.s. (Dr. L and Dr. R) ended up at a Neurologists (Dr. V) Nine months after the pain started, he ran a nerve conduction study, testing the nerves electrically. He said the tests were all within normal range. Dr. R didn't know what to do, after looking at other possibilities including bursitis, vitamin and mineral deficiencies, brain trauma, Multiple Sclerosis and thankfully finding nothing, "give it time" was again suggested.
2012
It wasn't until we pulled medical records 3 years later, we learned the nerve tests from Dr. V revealed more than 50% (almost 2/3) less reaction on the "lateral femoral cutaneous nerve" than the other leg, and he told Dr. R it was nerve damage! Wondering what else we had not been told or had missed, we got copies of all my medical records from the c-section and all Dr.s I had seen up to that point.
In March, the kids and I went to Bountiful, UT to meet with the specialist James Nursery leader suggested-- Dr. C., Internal Medicine. (who is also an LDS Patriarch for his Stake.) We stayed with Tammy in Bountiful only a week before she moved out of that city. (Coincidence? Not a chance! Thanks Tammy!) I got lost walking around, trying to find Dr. C's office, fell on black ice, hit my head (while on the phone with Tammy :) but I knew I needed to go...When I first met Dr. C. he said, "I know you. You've been in before...haven't you?" I had never met him, but I testify the Spirit of the Lord was with him. He proceeded to really think things out, out loud and writing page after page of notes. He knew many things about me and my family without even asking! He ran a battery of tests (Diabetes, Lupus, Thyroid, etc: All thankfully negative!). We returned for a follow up--yes, he confirmed it's definitely nerve damage, not sure why or how bad.
In May, Dr C referred us to a University of Utah Neurologist (Another Dr. R :) who practiced in Jackson, WY. That was a closer drive, sooner to get an appointment than Utah and Bob and I had never been to Jackson, so off we went. I finally gave in and took an anti-seizure medication in May to control the pain that had escalated...but the effects controlled me. (Thankfully, my cousin often took my keys when I got lost at Walmart in Rexburg, while shopping in Idaho Falls, or gave me her son so she could chop vegetables...Michelle--You saved me too many times to mention! THANK YOU! THANK YOU!)
In June, Dr. C, in Utah forwarded all my records to Jackson...but they were all handwritten, so only one or two words were readable...I couldn't stop laughing! (either that or cry...) So back at "square one." Dr. R suggested a few possibilities one being a diabetic form of neuropathy that happens when you DON'T take insulin (I didn't), your numbers are in range (mine were) by using diet and exercise to control diabetes (gestational or otherwise). That was the weirdest idea I had heard yet! There is even a non-diabetic form of the amyatrophy. After returning home, Bob and I emailed all the records we had gathered so Dr. R. could look at all Xrays, MRIs, blood work, nerve studies, etc.
I was referred to Dr. B. for more nerve testing. September, 3 months after the initial visit to Jackson, Dr. B hadn't even looked at my chart and didn't know why we were there! After 3 months of waiting for this appointment, I was really frustrated. The testing Dr. B did didn't cover the nerve in question, it was to rule out other bigger nerves that could also be affected. He also decided not to test my back, even though Dr. R wanted him to.
In October, we went back for the results of nerve testing. I again requested all medical files from the hospital in Jackson, so I could have them on file. Dr R. said it was the LFCN and is called Meralgia Paresthetica. Not sure what kind (compressed or trauma). Cortizone not an option. Surgery not an option. Just find another class of medications to take and deal with it. He couldn't say whether the nerve was growing back or not. Another prescription was given, taken, and crossed off the list due to horrendous side effects.
I thought, by now we had "done all we could do" and I would just deal with it. A few weeks later, the records from Jackson arrived. I read from June on to the latest in October. The last line said Dr R. never got any of the imaging or lab work we sent back in June! (even though he responded to say he did)
In December, I opened up to a few people in my ward who I felt inspired to council with. That resulted in a a week of Miracles, one after another! One sister recently had hip surgery which resulted in her LFCN being cut. So it's completely numb for my same nerve is essentially screaming. She suggested I see Dr W. her Orthopedic Surgeon in Idaho Falls and then 3 other ward members spoke very highly of him! When I tried to make an appointment, the nurses told me Dr W. wouldn't see me, nerves are not what he does. Bob and I knew it would be a miracle if he I got in and prayed it would happen if it was right. Dr. W shocked the nurses and answered our prayers! So now coming full circle, he again diagnosed it as MP and said my options are only: cortizone shot or surgery to remove the nerve! He thinks there are nerve bundles that tried to regrow, but couldn't and the nerve is actually bulging. I decided to get the cortizone shot for two reasons: Any temporary relief at all, and to see how it would feel if the nerve were cut, as Dr W suggested. Since at least 2 branches of the nerve are involved, I would be numb the entire front and outside of my leg from hip to knee, instead of a small area like my hip replacement friend.
Surgery still seemed like best long term option after receiving a blessing "we would know what to do and to do it quickly." I just hadn't wrapped my head around it. It can't be THAT big of deal. It will be fine. I'll deal with it. Is this really what the Lord wants for me? We've known this was in the Lord's plan, and tried to listen and do things on His timeline. Does that stop me from researching for hours at a time? No, but the Spirit bears witness what I need to bring up at appointments, etc. I have really tried to think things through, ask and trust in Him. And as I research, I am beginning to understand why it has been so difficult to figure out with so many nerves, muscles, not to mention all the "possible factors." Up to this point, its all been very educated guesses until the cortizone shot.
That Sunday night, I went to Pack Night and one of the boy's moms, who works in the Mother & Baby Unit at Madison Memorial Hospital, came over saying "it's none of my business but..." I knew she would ask about the cane, but was completely caught off guard by her question--"Were you the one whose spinal went completely wrong and you left the hospital with a walker?"
"Well, not exactly" I said "we still don't know what happened" and I gave her the short version of the 4 year saga. She couldn't believe I don't have a wheelchair at home, just the cane. (I made a dumb promise to myself before the surgery---that I wouldn't get back in a wheelchair after leaving the hospital...yeah, broke that many, many times!) As a maternity nurse, she had NEVER seen, heard anything like it and wouldn't have known what do to, like the other nurses. She strongly suggested the surgery would not take care of the problem...(Coincidence? No! Exactly what I needed to hear, when I needed to hear it!) She further suggested we find where the nerve is damaged (back, hip, abdomen) to know where/if surgery would work. (Makes sense right? That's what we've been trying to do for years! :)
The next day while carpooling home, James speech buddy who is terribly shy asked "Can James come over right now?" We were astounded and his dad, a BYUI nurse instructor, happily agreed and he printed off medical journals from UpToDate and Cochrane for me to read and find the most current medical information. I asked questions and he helped me understand what they said. There was enough "reasonable doubt" that the surgery is on hold.
Then I learned about an MRI of nerves and Neurograms. But the LFCN nerve is so small compared to the larger, dare I say, important nerves, I didn't know if it would show anything. Dr. R. from Jackson says it won't. But I found a lot of research from University of California San Francisco showing Meralgia Paresthetica on the MRN, as well as the bulging nerve Dr. W. referred to. Mostly being done for people considering surgery. If it shows on the imaging, it would be most definitive of growth or death of the nerve. I mentioned wanting to go to California (Mayo Clinic was a close second as we have friends that live close) and my father-in-law asked me down a summary to send to a neurosurgeon he knows. Only snippets of this are written down on the blog or otherwise and its been helpful to put most of the experience on paper. (Believe me, this is not all :) He contacted the neurosurgeon, and Dr. R (number 3) suggested I do come to UCSF, and suggested some names of the best in the field and then said he would make the calls! I have sent all records to UCSF and now we wait...
So if you read this far, congrats! Please don't feel sorry or have pity for us. We have seen more miracles since that time than we could have ever imagined. Our children are absolute angels! A sweet tender mercy from the Lord to strengthen me to be a mother. Not the mother I want to be, but the mother He wants and needs me to be! Also, to help the kids and ME learn principles like faith, knowledge, patience, compassion and service. How could I have known Ella would learn all 13 Articles of Faith as I taught from the recliner? Or, the blessings from Bob working as an ordinance worker in the Rexburg temple when we needed him home so much!? Or the extra one-on-one time James now needs with Speech? I am so grateful for this Gospel and all that I have learned through this experience and seeing the changes that have come over our family. The Atonement is real. His grace is sufficient for all! I have grown much closer to my Savior over the last five years! While I haven't been able to go and visit everyone in the ward, as I would like, I have loved doing family history again. Indexing, researching, scanning stories and learning of the faith and legacy of family members. These are things that while I love to do, I would probably not find time for if I was able to do all that I wanted to do. Am I ready for this trial to be over? YES! Of course! But I have tried to see the good, not always easy, but endure to the end is much easier to say than do. It is what we are all here to DO. Be tried, tested and practice what we have learned that one day we may be perfected through Him. President Eyering says in regards to trials "Some blessings come soon, some come late and some don't come until heaven." Between the late and heaven, there is a lot of time and always a chance :) Give Him a chance to make miracles in your life and He will!
Some of the possibilities of how the nerve damage happened include:
gestational diabetes, maternity belt, pre-term labor, spinal/anesthesia hurt going in (I arched my back and complained as shocks went down my legs, but it was not re-done), surgical tray put on my left foot caused foot to "turn out" during surgery, many Dr's say it is a very low incision, OB Dr. cut farther left than previous scar, baby stuck/suctioned on left side, and OB Dr. arrived late, left early from surgery (Dr.s dad died Sat, funeral Tues, our surgery Wednesday, his medical practice ribbon cutting/open house immediately followed surgery) I have since learned from medical journals that all these could be factors...so I cal it the "perfect storm" of possibilities.
We felt impressed to make it a "New Years Resolution for 2012" to finally get an answer and treatment options! Here we go again...
James loves the nursery leader in Hibbard. And she and I became really good friends. She has helped her family deal with a fair share of complicated nerve problems and she put us on the path to Utah and those who knew nerves.
James loves the nursery leader in Hibbard. And she and I became really good friends. She has helped her family deal with a fair share of complicated nerve problems and she put us on the path to Utah and those who knew nerves.
2008
The minute the anesthesia wore off my leg, it felt like someone was slicing it off at the hip!! I told the nurses I felt like I had a hip replacement, not knowing anything else to compare it to. It was like no pain I had ever experienced before, much WORSE than the c-section, and none of the prescription medications even touched it! (Bob and I didn't say much about the situation as we didn't know what happened) The nurses didn't want to send me home, but had no idea how to help. Receiving a priesthood blessing of healing, and after staying 4 days in the hospital, we went home, praying it would improve. It was a Saturday, we didn't know if insurance would cover me for the weekend, and baby had already been discharged, so we left praying and hoping for the best. Week after week, we got seemingly nowhere with Drs. until Dr. P, the pediatrician agreed to look at me and suggested the abdominal wall was hit during the surgery, could be nerve issues and that it will heal "in time."
2009
I went back to school in January, got around with a cane, drove around campus with a handicapped permit. After that semester, I saw another set of Dr.s. (Dr. L and Dr. R) ended up at a Neurologists (Dr. V) Nine months after the pain started, he ran a nerve conduction study, testing the nerves electrically. He said the tests were all within normal range. Dr. R didn't know what to do, after looking at other possibilities including bursitis, vitamin and mineral deficiencies, brain trauma, Multiple Sclerosis and thankfully finding nothing, "give it time" was again suggested.
2012
It wasn't until we pulled medical records 3 years later, we learned the nerve tests from Dr. V revealed more than 50% (almost 2/3) less reaction on the "lateral femoral cutaneous nerve" than the other leg, and he told Dr. R it was nerve damage! Wondering what else we had not been told or had missed, we got copies of all my medical records from the c-section and all Dr.s I had seen up to that point.
In March, the kids and I went to Bountiful, UT to meet with the specialist James Nursery leader suggested-- Dr. C., Internal Medicine. (who is also an LDS Patriarch for his Stake.) We stayed with Tammy in Bountiful only a week before she moved out of that city. (Coincidence? Not a chance! Thanks Tammy!) I got lost walking around, trying to find Dr. C's office, fell on black ice, hit my head (while on the phone with Tammy :) but I knew I needed to go...When I first met Dr. C. he said, "I know you. You've been in before...haven't you?" I had never met him, but I testify the Spirit of the Lord was with him. He proceeded to really think things out, out loud and writing page after page of notes. He knew many things about me and my family without even asking! He ran a battery of tests (Diabetes, Lupus, Thyroid, etc: All thankfully negative!). We returned for a follow up--yes, he confirmed it's definitely nerve damage, not sure why or how bad.
In May, Dr C referred us to a University of Utah Neurologist (Another Dr. R :) who practiced in Jackson, WY. That was a closer drive, sooner to get an appointment than Utah and Bob and I had never been to Jackson, so off we went. I finally gave in and took an anti-seizure medication in May to control the pain that had escalated...but the effects controlled me. (Thankfully, my cousin often took my keys when I got lost at Walmart in Rexburg, while shopping in Idaho Falls, or gave me her son so she could chop vegetables...Michelle--You saved me too many times to mention! THANK YOU! THANK YOU!)
In June, Dr. C, in Utah forwarded all my records to Jackson...but they were all handwritten, so only one or two words were readable...I couldn't stop laughing! (either that or cry...) So back at "square one." Dr. R suggested a few possibilities one being a diabetic form of neuropathy that happens when you DON'T take insulin (I didn't), your numbers are in range (mine were) by using diet and exercise to control diabetes (gestational or otherwise). That was the weirdest idea I had heard yet! There is even a non-diabetic form of the amyatrophy. After returning home, Bob and I emailed all the records we had gathered so Dr. R. could look at all Xrays, MRIs, blood work, nerve studies, etc.
I was referred to Dr. B. for more nerve testing. September, 3 months after the initial visit to Jackson, Dr. B hadn't even looked at my chart and didn't know why we were there! After 3 months of waiting for this appointment, I was really frustrated. The testing Dr. B did didn't cover the nerve in question, it was to rule out other bigger nerves that could also be affected. He also decided not to test my back, even though Dr. R wanted him to.
In October, we went back for the results of nerve testing. I again requested all medical files from the hospital in Jackson, so I could have them on file. Dr R. said it was the LFCN and is called Meralgia Paresthetica. Not sure what kind (compressed or trauma). Cortizone not an option. Surgery not an option. Just find another class of medications to take and deal with it. He couldn't say whether the nerve was growing back or not. Another prescription was given, taken, and crossed off the list due to horrendous side effects.
I thought, by now we had "done all we could do" and I would just deal with it. A few weeks later, the records from Jackson arrived. I read from June on to the latest in October. The last line said Dr R. never got any of the imaging or lab work we sent back in June! (even though he responded to say he did)
In December, I opened up to a few people in my ward who I felt inspired to council with. That resulted in a a week of Miracles, one after another! One sister recently had hip surgery which resulted in her LFCN being cut. So it's completely numb for my same nerve is essentially screaming. She suggested I see Dr W. her Orthopedic Surgeon in Idaho Falls and then 3 other ward members spoke very highly of him! When I tried to make an appointment, the nurses told me Dr W. wouldn't see me, nerves are not what he does. Bob and I knew it would be a miracle if he I got in and prayed it would happen if it was right. Dr. W shocked the nurses and answered our prayers! So now coming full circle, he again diagnosed it as MP and said my options are only: cortizone shot or surgery to remove the nerve! He thinks there are nerve bundles that tried to regrow, but couldn't and the nerve is actually bulging. I decided to get the cortizone shot for two reasons: Any temporary relief at all, and to see how it would feel if the nerve were cut, as Dr W suggested. Since at least 2 branches of the nerve are involved, I would be numb the entire front and outside of my leg from hip to knee, instead of a small area like my hip replacement friend.
Surgery still seemed like best long term option after receiving a blessing "we would know what to do and to do it quickly." I just hadn't wrapped my head around it. It can't be THAT big of deal. It will be fine. I'll deal with it. Is this really what the Lord wants for me? We've known this was in the Lord's plan, and tried to listen and do things on His timeline. Does that stop me from researching for hours at a time? No, but the Spirit bears witness what I need to bring up at appointments, etc. I have really tried to think things through, ask and trust in Him. And as I research, I am beginning to understand why it has been so difficult to figure out with so many nerves, muscles, not to mention all the "possible factors." Up to this point, its all been very educated guesses until the cortizone shot.
That Sunday night, I went to Pack Night and one of the boy's moms, who works in the Mother & Baby Unit at Madison Memorial Hospital, came over saying "it's none of my business but..." I knew she would ask about the cane, but was completely caught off guard by her question--"Were you the one whose spinal went completely wrong and you left the hospital with a walker?"
"Well, not exactly" I said "we still don't know what happened" and I gave her the short version of the 4 year saga. She couldn't believe I don't have a wheelchair at home, just the cane. (I made a dumb promise to myself before the surgery---that I wouldn't get back in a wheelchair after leaving the hospital...yeah, broke that many, many times!) As a maternity nurse, she had NEVER seen, heard anything like it and wouldn't have known what do to, like the other nurses. She strongly suggested the surgery would not take care of the problem...(Coincidence? No! Exactly what I needed to hear, when I needed to hear it!) She further suggested we find where the nerve is damaged (back, hip, abdomen) to know where/if surgery would work. (Makes sense right? That's what we've been trying to do for years! :)
The next day while carpooling home, James speech buddy who is terribly shy asked "Can James come over right now?" We were astounded and his dad, a BYUI nurse instructor, happily agreed and he printed off medical journals from UpToDate and Cochrane for me to read and find the most current medical information. I asked questions and he helped me understand what they said. There was enough "reasonable doubt" that the surgery is on hold.
Then I learned about an MRI of nerves and Neurograms. But the LFCN nerve is so small compared to the larger, dare I say, important nerves, I didn't know if it would show anything. Dr. R. from Jackson says it won't. But I found a lot of research from University of California San Francisco showing Meralgia Paresthetica on the MRN, as well as the bulging nerve Dr. W. referred to. Mostly being done for people considering surgery. If it shows on the imaging, it would be most definitive of growth or death of the nerve. I mentioned wanting to go to California (Mayo Clinic was a close second as we have friends that live close) and my father-in-law asked me down a summary to send to a neurosurgeon he knows. Only snippets of this are written down on the blog or otherwise and its been helpful to put most of the experience on paper. (Believe me, this is not all :) He contacted the neurosurgeon, and Dr. R (number 3) suggested I do come to UCSF, and suggested some names of the best in the field and then said he would make the calls! I have sent all records to UCSF and now we wait...
So if you read this far, congrats! Please don't feel sorry or have pity for us. We have seen more miracles since that time than we could have ever imagined. Our children are absolute angels! A sweet tender mercy from the Lord to strengthen me to be a mother. Not the mother I want to be, but the mother He wants and needs me to be! Also, to help the kids and ME learn principles like faith, knowledge, patience, compassion and service. How could I have known Ella would learn all 13 Articles of Faith as I taught from the recliner? Or, the blessings from Bob working as an ordinance worker in the Rexburg temple when we needed him home so much!? Or the extra one-on-one time James now needs with Speech? I am so grateful for this Gospel and all that I have learned through this experience and seeing the changes that have come over our family. The Atonement is real. His grace is sufficient for all! I have grown much closer to my Savior over the last five years! While I haven't been able to go and visit everyone in the ward, as I would like, I have loved doing family history again. Indexing, researching, scanning stories and learning of the faith and legacy of family members. These are things that while I love to do, I would probably not find time for if I was able to do all that I wanted to do. Am I ready for this trial to be over? YES! Of course! But I have tried to see the good, not always easy, but endure to the end is much easier to say than do. It is what we are all here to DO. Be tried, tested and practice what we have learned that one day we may be perfected through Him. President Eyering says in regards to trials "Some blessings come soon, some come late and some don't come until heaven." Between the late and heaven, there is a lot of time and always a chance :) Give Him a chance to make miracles in your life and He will!
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