I’m writing this partially in the middle of the night with lack of sleep and frustration of constant pain and ongoing medical issues. I'm also writing this because no one would or will believe how much has gone wrong in my life but while it is going so wrong, it is going so very right as well. I know that seems to not make sense but it will in a little while. Just keep on reading.
In 2002, I was in a car accident and I was hurt badly. Our van was hit by a guy fighting with his wife, who ran through a red light. I was only 90 pounds back then and I was a passenger in the front seat, wearing a seatbelt. I still got hurt very badly. I was unconscious when the paramedics came and had been for about 20-30 minutes. I was taken to the hospital and later was found to have: a mild traumatic brain injury, 2 torn rotator cuffs (which turned into adhesive capsulitis or frozen shoulders x 2!!). *I had been diagnosed with shoulder instability times 2 or both shoulders after the dislocation a few years prior. I had a winged scapula which is very painful along with an 8 inch span of right long thoracic nerve damage. It was and is so very painful due to the nature of the nerve pain. I had injured my neck and lower back badly herniating several cervical and lumbar discs including C5-6 and L4,5 and S-1. They were bulging and herniated and along with the long thoracic re-injury and the neck & shoulders, I was in horrible pain. I hurt my knees and tore my meniscus into a "parrot beak tear". I tore ligaments and sprained my wrist and my ankle and I hurt my right foot. It may not sound like so much, but as they were doing X-rays, my husband said that people were vacating the hallways where they could hear my screams from just the movement.
I was in the hospital for almost a week, where they did nothing but put me in some shoulder braces which turned my double torn rotator cuffs into frozen shoulders or adhesive capsulitis that took about 5 years to finally get better and I still have pain. I endured 12 surgeries and 3 years of TBI rehabilitation at a brain injury center in Ann Arbor MI. My shoulder had been hurt but for a year I went to Orthopedic Dr. after Orthopedic Dr. looking for some pain relief and answers for the nerve "zings" in my left arm. Finally, after a year, I found a Dr. who listened to me and he sent me to the Cleveland clinic where they were talking of doing a nerve/muscle cadaver transfer! The Dr. decided against that because the surgery would be a very large one with much recovery time. It would have only helped one area of pain and I had many. It wasn't worth it he said. So the Orthopedic Dr here that listened to me finally, said that my biceps tendon had also ruptured at the car accident and it grew wrong for over a year! He did surgery on me and had to drill into my shoulder bone and put 2 screws into my upper arm and unattach and reattach my biceps tendon ! That took care of those nerve "zings" so that nuisance was gone finally!!
In 2005, I had a mild heart attack. It was from "broken heart syndrome" the Dr said. It was from a long life of sadness with a huge sad event in 2004. We won't discuss that today. I will save it for another post. A year later I was eating breakfast with my daughter and my husband and I just suddenly started talking funny. I thought about what I wanted to say but it wouldn't come out right. I was just all clumsy and my right side went numb from the top of my head to my right foot! I knew something was wrong but I really hate the E.R.'s as they just thought I had too much wrong with me and didn't know what to do with me. It ended up that that was a Saturday and on Monday I went straight away to my GP and he sent me immediately over to his Neurologist friend. I had an emergency CT scan because I cannot have an MRI (I have a pacemaker). I also had an emergency EEG. They both showed that I actually had a CVA which is a stroke! I was aghast and frightened; I couldn't believe it. I had to wear my leg braces again and just did more Physical therapy.
I forgot to tell you that prior to the heart attack and the CVA, in 2003 I had been passing out quite often and falling for the prior year since the car accident. I was in awful chronic intractable pain and I was continuing to go to brutal Physical therapy, which is terribly painful for adhesive capsulitis or frozen shoulders! I was strapped onto a PT bike and I kept telling the therapist that I was not feeling well. Nobody would listen to me at the DMC rehab center where I was supposed to be getting helped for the MTBI and the physical rehab stuff. Finally I passed out on the bike and hit the floor! They put me on a bench or something and took my Heart rate and blood pressure. My heart rate was only 23 beats per minute and my blood pressure was only 70/40!!! I went to the hospital and they immediately got me stabilized and I had to wait a few hours for an ambulance that had a heart monitor in it. I finally arrived at Beaumont Hospital and they swiftly put me on all kinds of heart monitors and such. They observed me over night and came in the morning to tell me that my heart had been stopping all night long and that I needed a permanent dual chamber pacemaker! I will have it now forever. I also was found to have "Sick Sinus syndrome" or a bradycardia /tachycardia arrythmia.
In 2007, I had what was supposed to be my last surgery and it was on my right foot. They said it would only take about 30 minutes so due to the fact that I have Atrial fibrillation, and I'm on blood thinners to prevent another stroke, they put a blood pressure cuff on my ankle. It was to prevent blood loss but the surgery ended up taking 2 hours instead of 30 minutes and I ended up with RSD/CRPS in that foot. I was diagnosed with RSD/CRPS at my 6 week check up. I got a second opinion and the Orthopedic foot specialist walked into my exam room and he got no farther than the doorway, saw my foot and said "classic RSD/CRPS"!
I then started becoming allergic to antibiotic after antibiotic, I found out that I have Arnold Chiari malformation I. Which I had no symptoms from all of my life, but after the car accident I had seizures at first and later I had bad neck and headaches. Arnold Chiari Malformation is when the hindabrain or the brains tonsils are too swollen and do not fit into the top of the spinal canal very well. I started needing more anesthetic than most people for dental and other surgeries and no one knew why? Just one thing after another kept popping up with my health and none of it was anything I could just "make up in my head". I had to get 2 behind the ear hearing aids for bi-neural sensory neural hearing loss because my Cerebellum was injured during that car accident and the brain injury. I have very bad dry eye and have had the punctal plugs more than 3 times and my vision had been double until about a year ago when it changed to more of a "halo" effect. I had prisms on my glasses after seeing a Neuro Ophthalmologist several times also.
For some of my heart issues, I was diagnosed with in 2003, by the Head of Cardiology and Autonomic Dysfunction and EPS clinic at University of Toledo Medical Center; as having quot;Dysautonomia" and POTS or "Postural Orthostatic Tachycardia syndrome", along with NCS or “Neurocardiogenic Syncope”. I had to get the pacemaker in 2003, following many fainting incidents and a plummeting Blood pressure and Heart rates, along with Sick Sinus Syndrome and MVP and Arrhythmia’s. But in 2013, I needed my first pacemaker replaced due to the fact that it had worn a hole right through my pectoral muscle. That surgery was not supposed to last long either. But the Dr. came out after almost 2 hours and told my husband that there was a hole in my pectoral muscle and he had to get a plastic surgeon to fix the muscle and then they put a new kind of pacemaker into my chest. It has a "cardio buddy" monitor that sits on my dresser and monitors my heart 24/7/365.
I visited a pain clinic and the best pain Dr. in our area for about 3 years. I went through the epidural blocks, trigger point injections and more. I did everything he asked and more. I went to biofeedback classes and through the Psychological testing. It did in fact prove that I am not an "addictive personality type" and I was happy to know that. I mean I knew it but it is nice to have that in writing. But that pain Dr. wanted to give me an intrathecal pain pump into my gut right under my rib cage. I am not very large and I already have a pacemaker and did not want that there as well. It was bulky and large and looked like a hockey puck and I didn't want any part of it.
I was a person who never even took an aspirin for a headache but after the car accident, surgery after surgery and so much pain, I had to succumb to taking pain medications. Oh….I almost forgot to tell you also that in 2013, when I had my 2nd pacemaker surgery, my Dr., who is a Neuro Cardiologist, did research on RSD/CRPS and found that sometimes if they do an internal wash of "Bipvucaine", during the surgery, they can hold off RSD/CRPS from spreading to that surgical area after a large surgery like mine. We were all hoping that it would work for me. It did not work for me and my RSD/CRPSII did spread to my left chest area, left arm and really considered total “full body” RSD/CRPSII. I was diagnosed by a Rheumatologist in 2009 or so to have R.A. or Rheumatoid Arthritis. She gave me “Humira” to take home as well as the kit and information and all the things I would need for the injections at home. I had not taken any of the “Humira” yet, when I found out that i have an Immune deficiency disease called “Hypogammaglobulinemia”. I have very very few IGA, IGG immunoglobulins, leaving me susceptible to illnesses. That Rheumatologist moved out of state and I went to another who was not sure if I have RA or not? I was not going to take the meds so I just let it go in “limbo” not knowing. My Dr. doesn’t seem to think it makes a difference if I do or don’t have it? I then visited the Hand specialist, a very well known Orthopedic Dr. in the same Health system as the others for the most part. He suggested twice now, last year in 2013 and this year in the Summer of 2014, that I do in fact have R.A. and he thinks possibly “Lupus” or another autoimmune disease. For some reason my GP isn’t sure either way because my blood test came back Negative for the RH factor. But the hand specialist, Orthopedic Dr. told me that the blood test can be negative for up to 8 years and in the meantime I have what he called “R.A. nodules in my cervical neck and my right hand bones”. I’m just a bit confused and not knowing where to turn. I’ve had 3 blood transfusions and those were several years ago and they were for very bad Anemia, my Hemoglobin was 8.0 and I was not bleeding internally and my colonoscopy came back good. I’ve been Anemic for quite a number of years and looking back at my childhood medical records, I was Anemic as a baby as well. I have since had a special IV of something from the Hematologist and he sort of “fixed ” it for the last 3 years and my Hemoglobin has been 12 or so instead of 8. Now I carry around a laminated prescription written by the Hematologist that says “Suzanne Stewart cannot have a blood transfusion due to IGA deficiency, Unless they are washed RBC’s”. I also have Osteoarthritis and have had a bone density test showing Osteopenia and possible Osteoporosis in my left hip and femur. I have Eczema very bad Eczema and the staff physician in Dermatology has been seeing me and he calls it “Eczema secondary to RSD/CRPS”. My skin has become much thinner and I don’t heal well at all; it takes my body a very long time to heal.
I came back for my 6 week check up and for the next 9 months or so I felt awful and so much worse than before the surgery. The RSD/CRPS had spread and the new pacemaker was not the same as my old one. This one takes alot of getting used to and my body also had to get used to it. Finally after a year or so, they tweaked the pacemaker several times and it is finally doing well. But I never have felt the same. I am more tired and just haven't ever fully come back this time.
I had CKD II prior to all of this and then I had all of these things happen to me. One thing after another after another! My RSD/CRPS has spread to "FULL BODY/systemic" and I am in pain 24/7. I have central sleep apnea and have gone to a sleep study clinic. They say its from the Dysautonomia and the medication and the pain issues. It's not terrible but not very good for me to have either. My both knees are terribly painful and I have: Chondromalacia Patella and Patella femoral pain syndrome. I have fallen 6 times in the past year and have had 6 concussions! I tore my left meniscus this year and the Dr. just told me (an Orthopedic Dr) that "well everyone over 50 has a torn meniscus"! WHAT??? No they don't! He was belittling me when he wanted to give me a cortisone shot in that painful RSD/CRPS knee! He said I was being "hysterical". But I was crying because I didn't want anyone to touch my knee let alone put a shot into it! He was not the gentlest of people either! I went ahead and allowed him to do the shot and I was very brave. It hurt terribly but he had his nurse continue pressing the Novocaine spray onto it as he put in the needle.
I have heard of EDS or Ehler-Danlos Syndrome. I am the Administrator/moderator for an 800 person group for support of pain and invisible diseases. I knew about it but never thought it could be me. But when I took the Beighton test and scored very high on it and when I found that I have 23 symptoms of it, now I'm really starting to wonder! It could be the the one thing that ties all of these pain maladies together possibly? I need to do some more research and try to find a Dr. in Michigan that studies EDS. I told my GP and he just told me that I have so much wrong that there's "no reason to find out if I have EDS because there's nothing they'd do for it anyways." Well, I believe that if I got a proper diagnosis and if I do in fact have it, that would make everything make sense and all that has been going wrong with me and all of the pain issues etc. I honestly believe that with a high score on the Beighton test and with having 23 of the symptoms including : Scoliosis, Chiari I, very bad dry eye, hearing loss, vision issues, pain widespread constant, RSD/CRPS, Dysautonomia, POTS, problems with my feet and one leg being longer than the other. Also the shoulder instability and sublaxations and dislocation. I also need more anesthetic than most people for my size and especially at the Dentist office! I have receding gum lines and just many many issues that all tie together. I will keep you posted but thought I would just give you an idea of some of the things I've been through. Thank you so much for reading and I hope to have some good research information for you next time with places to go for help with EDS and other information.
But before I sign off today. I want to share some wonderful news with the whole world! For 9 yrs I've not had my oldest daughter at my side. She'd been estranged for various reasons; but we won't go into any of that because it's finally over! I was very sad to the point of feeling despondent! Well she and I, her dad and her younger sister have all Made amends and the years of sadness & feeling inadequate all went away! I never thought I was going to have the pleasure of being a grandmother and now I'm "Gommy"!! I love it, I love being a grandmother to two beautiful little girls, Olivia age 2 & McKenzie age 3 months! I thank God everyday now for having my family back all together again! So don't ever lose hope! Things happen, people change and I've changed as well! I've never stopped thanking God for the good things in my life! I'm just glad that I didn't give up! A lesson in life learned! Now I'm not going to give up on trying to put the pieces of my own medical puzzle together!!