Over the next seven years so much had happened. I will try my best to fast forward and keep it brief. My headaches completely disappeared about two and half months post-op. I felt so different. It was awesome! I could actually think without pushing the thoughts through the pain. It was a miracle of Modern-Day Medicine! I would get an occasional "normal" headache, take two Tylenol and it was gone! All I could say was "wow". I continued to have joint and muscle pain and my back still gave me problems. My short term memory was completely shot ( which kind of freaked me out at times) and I lost the ability to plan. That was so difficult to deal with because I was so incredibly organized and organization gave me a sense of control. I was unable to go back to work. Can you imagine having a nurse take care of you who did not have a short term memory or organizational skills? What a recipe for disaster! I stayed busy with volunteer work at my church. I sang, and worked with the teen ministry. I even became a foster parent. I needed some sense of purpose. So I learned to work within the realm of my abilities. I kept my Nursing license and continued to work on my continuing educational credits in hopes that one day I would regain my lost memory. Over the course of the following year, I was diagnosed with Chronic Lyme Disease. I had to see an expert in Conneticut because no one in RI was treating the then controversial disease. I had to pay out of pocket and the visits were $500 a pop! The doctor surmised that I had contracted the bacterium sometime in my childhood while camping in the woods of southern RI. The treatment was brutal. The first week on the antibiotics was rough. I felt like my body was run over by an 18 wheeler. My eyeballs burned and the medicine was hard on my stomach. Over the next five years, I was treated with both antibiotics and herbal remedies. Every time I stopped the treatment, the joint pain and chronic fatigue would return. Then one day, the pain and extreme sleepiness were gone. However, I still continued with the spinal and leg pain. It was hard to climb a flight of stairs and almost impossible for me to walk around the block. The lack of movement and all the meds put weight on me and I felt horrible. So, I decided to join the YMCA and take water aerobics. It was non weight bearing and do-able. I went three times a week for a couple of years until one day, I could no longer even do that. The pain in my hip and back could no longer bare the movements.
I was then forced to quit.
Dina, I was just reading your blog about your experience with the head pain and a lot of your symptoms mimic my 15 year old daughter. She started with head pain when she was 12, had all kinds of tests done that were all negative and saw several neurologists including the last one at the Lahey Clinic. The doctor at Lahey diagnosed her with chronic migraines, but the medications they give her do not even touch the pain. She now has to deal with it every day and some days are worst than others. She has not been able to enjoy her teenage years too good, she also gets very tired and sleeps after school. She has now been diagnosed with deep depression and she was having anxiety attacks at home and school. Because of this, she has missed quite a bit a school, the school has put her into Truancy Court even though she has dr. notes and medical records to back up her days out. She went to the Hasbro Partialization Program for a month for the headpain and anxiety/panic attacks. They have her on Zoloft now which seems to be helping her moods, but she still has pain in her head every day on the left side. In the beginning, she wasn't able to walk, I had to hold her up to get around, her concentration was bad and she would have these starring spells when she wouldn't even hear you when you were talking to her. I wrote this today, after reading your story, and quite a bit of it sounds alike. She has also come down with mono now, has had it for the last three weeks. I don't know what more this kid can handle. When you are feeling better, maybe we can talk. I pray to God every day to help her, but I have not received that answer yet. I want my daughter to grow up and be a healthy adult and hhave a great future. She wants to go to college for Forensic Science. You are in my prayers and thoughts as you go through this difficult time in your life.
ReplyDeleteI am so sorry! Don't ever give up! I am currently working on a FB community page about Chiari malformation and tethered cord syndrome. Check that out. Also check out The Chiari Institute online. That is were I had my last surgery. If your daughter has had an MRI, you can fill out the questionnaire on their website and send them the MRI. Look at the questionnaire and see if she has a lot of the symptoms. It's a start. Email me anytime!
ReplyDeleteOkay, thank you for your information and I will check it out. I hope you feel better real soon.
ReplyDeleteYou also may want her to see a Lyme disease specialist. Dr James gloor in north Kingstown is good. Go to a Lyme web site and look through the symptoms and see how she matches up. Remember..I had three different problems at the same time. Let me know how u make out.
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