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Jun 2, 2018 Latest post:
Sep 19, 2018
I am wife to Russell and mom to Quinton 11, Jackson 9, Shiloh 6, and Branson 2. This site is to keep family and friends updated on my cervical neck surgery in Germany. Also I was just treated for Lyme Disease last week so I might also have some updates in the future here about that.
For those interested in the background story on the Lyme (and need for surgery) here it is.... As a child, I was often sick. I had many fevers, headaches, and was often cold and tired. Over the course of my 35 years of life, I have spent much much money on chiropractors trying to alleviate my headaches and back pain. Not long after we got married, Russ asked me (in a kind way :)) "Are you always sick like this?" I guess I thought it was normal to hardly ever feel good. Yes, I got a headache most every day and yes I had some stomach problems... But doesn't everyone?!?! Also I have never had much energy and have often felt I am an extremely lazy and un-self disciplined person. And time will tell how true that is or not. :)
In the summer of 2016, I woke up one morning feeling like normal and suddenly I felt like throwing up and I did! I threw up most all day and was sick for several days after. I kept feeling extremely wore out but thought maybe I had some flu bug even no one else around me was sick. But then 10 days later it happened again. And... 10 days after that... it happened again. During this time I noticed a very large red circular rash on my back. I was aware it could be Lyme Disease and eventually went to our local doctor. I knew if it was Lyme, I needed at least a couple months worth in antibiotics and was certain my little local doctor wouldn't know that. And even then, I knew many people still didn't get rid of their Lyme with just antibiotics. Luckily my dr did have some knowledge on Lyme and said she thought that's what I had. She knew it was pointless to test me for it because rarely do blood tests pick up Lyme Disease. She gave me a shot of antibiotics along with 10 days of oral. I took them and seemed to feel better for awhile. It was at least 4 months before that rash faded away.
Within just a few months, I started having a lot of strange symptoms including a lot of increased back pain, and leg/hip pain. The back/neck pain got so bad it was tingling down my arm. I began to dread the nights because they were so painful and plus I had started profusely sweating at night. Deep down I wondered if it was Lyme but wasn't sure what to do about it. I started having a lot of pain under my right arm also and after awhile realized I had a lump in my armpit. Of course I feared cancer. But decided to watch it for awhile and see what happened. I hoped it was just a swollen lymph node. I began to also experience quite a bit of nausea and dizziness. Also I had really bad pain in an area that I thought was a rib out of place.
Finally in Jan of 17 I went to my OB doctor to have the lump checked out. But nothing showed up on tests. Then in Feb I went to another doctor. He ordered various tests along with blood work and found I tested positive for Rocky Mountain Spotted Fever but by what the test showed, thought it was something I'd gotten as a child. He ordered another sonogram but again no results. If the lump wasn't a swollen lymph node, what was it???
Symptoms continued. In March I went to a natural doctor in Kansas City that 3 different friends recommended I go to when they heard I had Rocky Mountain Spotted Fever. Over the past year I have been to him 4 times. What I thought was rib pain, he said was liver pain from the damage Rocky Mountain Spotted Fever had done to it. He have me a lot of supplements and many of symptoms lessened and some went away. But the painful swelling on my right side never left much. And I continued to fight pain and nausea.
In the fall of 17, I joined a Lyme support group that was "advertised" in the Hearth and Home magazine. I learned of a doctor in Wisconsin that specializes in treating Lyme and many people had gotten help from him. So finally with much encouraging from friends and family, I booked appointments. But he was very booked out so my appointments weren’t until May.
In Jan of 18 the lump under my arm really flared up. It's never left but sometimes not as painful. So I decided maybe I should get a biopsy. My doctor sent me to a surgeon. He walked into the room and said "Well, what you have is a couple extremely swollen lymph nodes" I looked at him in awe and said "How do know that?" And he said "Your records show that." To say the least I was VERY disgruntled! Not sure how that important piece of information was never told to me but yes, it had showed up on one of my sonograms I'd had done. He said "Oh yes, they are very large! And if they're this large under your arm, I'm guessing you've got other enlarged ones but just can't feel them." And so of course I asked "So WHY are they enlarged?" His reply was "That's the good news. We have an answer. Your blood work shows you have Rocky Mountain Spotted Fever and the swollen lymph nodes are an immune response. " Hmmmmm ok... so my my other doctor said I'd had it since I was child but whatever. (I didn't say that to him :)) And my next question is "What do we do to get rid of the swelling?" He prescribed an anti-inflammatory medicine that's also a pain med and said it should help in a month. Well it did nothing.. truly nothing!! And I was wishing it'd help my back pain but nope!
Anyway, symptoms have come and gone and returned again etc. Sometimes minor, sometimes major! About 2 months ago I started having excruciating pain again in my neck. The pain has never left there but it comes and goes in severity like the rest of my symptoms. But this time, it was the worst it'd ever been. It caused me tears just to comb Shiloh's hair for school in morning. My left arm was really hurting and tingling and sometimes feeling a little numb. I was having sleepless nights due to pain. My muscles were in knots. I went the chiropractor several times and a massage therapist but nothing helped. So back to local dr who prescribed muscle relaxants, strong pain med and steroids. I asked for an MRI so she ordered that too. I wanted to have the MRI done in Denver (4 hours away) cuz it was so much cheaper but didn't want to make 2 trips so waited to get it done for about a week when we had plans to go to a conference there. In the meantime, the pain meds, steroids, and muscle relaxants did very little to help at all!
I was very miserable at the conference and even started having some swelling and numbness in my face instead of just my arm. I has some other strange symptoms so quick the muscle relaxant and steroids since they weren't doing any good anyway. I kept on with pain meds just in case they were doing something cuz I felt kinda desperate.
Several days later my doctor said the results of my MRI showed a pinched nerve and I needed to see a spine specialist. So a week later got an appointment with the specialist. He said "Physical therapy, nerve pain meds, and shots in your back will not help you! You need surgery. And you need surgery soon!" I left with a heavy heart and found myself a little shade tree to shed some tears under. But soon was trying to convince myself that surely I didn't need surgery and maybe this would go away after awhile on its on.
But my family quickly convinced that I must not ignore this and I needed to look into surgery! Well, I knew one thing for sure... I did NOT want to go to Germany!! No way! That would be way too hard to leave my children. And I just didn't want to go!! And it was just too stressful to add that into my life. But for some reason I found myself researching why people went to Germany to get back surgery instead of getting it done in the US. And then... soon I found myself sending off all my info to Ken Heibert, the liaison man, for surgeries in Germany.
I got that off to him shortly before we left for Wisconsin so figured I'd hear from him while we were there. Well, last Friday the 25th, as we were walking out of the Lyme doctors office from my last appointment, a message came through from him (I'd had my phone off while in the doctor's office). The message said... "When can I call you? Surgeon says you need to be an operating table son. It's serious!" It was just too much for me! Russ had to call him back. I couldn't hold my tears back.
Ken told him that in all his 6 years of being a liaison man, he had never seen a ruptured disc as bad as mine. Surgery got scheduled for June 6. And... I felt a little frantic. We're weren't even home and yet needed to be ready to leave for Germany in 8 days!!! We got home Sunday eve and... needless to say... the week has been one of the most hectic of my lives!!
To be continued... (By the way... I hate posting something without editing it.. but I don't have time today so hope you can make sense out of it all... I know there's mistakes)