- CASE FILE
I have had severe abdominal pain for over 6 years, which includes, heartburn and upper wrap around muscle pain. This is my 3rd submission.
ABOUT THIS CASE FILE
I am a 2 time cancer survivor, nasopharyngeal in 2013 and prostate in 2018. For the past 6 years I have suffered with progressive neuropathy, GERD, eating disorders, sour taste, anxiety and depression. I am a recluse. I have increased anxiety with the slightest thing, like loud noises, or anything that startles me. I have seen at least 30 to 40 Doctors, have extensive work ups. Tried many treatments and procedure, I only get worse. I have had the following Procedures for GERD: Linx(removed due to Achalasia), Stretta and Tif. None have helped. I’ve seen numerous Specialists at USC, UCLA and Cedar Sinai: Neurologists, Gastrointestinal, Rheumatologists, Infectious Disease, Surgeons, Pain Doctors and many more. I have burning pain throughout my body 24 hours a day.
Medical history as I remember it from Sept 2012 through November 2016.
Sept. 17, 2012 - I was treated for nasopharyngeal cancer with 35 rounds of radiation and 4 rounds of chemotherapy. The chemo drugs were Cisplatin and 5FU which was added to last round. I had an adverse reaction to that and was in the hospital for 3 weeks fighting an infection. Various antibiotics were used as I was very ill. I am trying to find out if a Fluoroquinolone was included. Neuropathy started in hands and feet during Chemo. They changed infusion form one day to 2 days to try and combat neuropathy. I have DEVELOPED Radiation Fibrosis Syndrome in my neck that has grown very bad over the last five years.
I came home on January 23, 2013 and fought my way back to good health. I was hiking a lot and by June I could do 150 pushups straight through. I was riding my Harley again and had resumed my new normal life
In early June of 2014 I came down with an ear infection and was prescribed Ciprofloxin ear drops. My wife and I left for Africa, June 10th for a 3 week safari. I started having nausea on the 3rd day we were there and just figured it was a stomach bug. We arrived home in July. I went to my ENT, Dr., who prescribed Levequin for my ear infection. After about 2 weeks both the ear and stomach seemed to resolve. No culture was done.
The middle of August I started having burning aching pains in my stomach. I went to several doctors, including GI, Infectious Disease and others. My tests always came back normal. During this time, I was still physically strong. However, I did notice more back pain and foot pain. I also developed floaters in both eyes, the right eye in Sept. 2014 and left eye Sept 2015.
In March 2015, I was putting on my socks and my back went out. I had a triple level fusion in Feb. 2010, which helped quite a bit until this point.
I April 2015, I went to Dr. about aching in my testes. He diagnosed a urinary tract infection then prescribed Cipro along with an ultrasound. Ultra sound was normal. No culture was done.
From this point on, my stomach has never gotten better. I have pain in my neck down my shoulders into my arms hands and fingers, as well as in my back, knees and ankles. This pain has been increasing and spreading. I have some loss of memory and a hard time focusing on tasks. I have also lost 30% of my hearing in both ears. It seems like I am in a mental fog.
It is painful to grasp a pencil or pen. When I use my right hand, my hand a fingers swell. Doing everyday tasks is becoming more difficult.
I have chronic fatigue I am unable to exercise much at all. When I do try to strengthen my body, I always make injuries worse,
I believe I have Fluoroquinolone Toxicity.
The tests I have had are the following: MRI, brain, lumbar spine, thorasic spine, cervical spine. Barium swallow test three times, manometry twice, colonoscopy, endoscopy, acidity test three times, numerous blood tests, stress test, CAT scan with and without contrast. MRI’s PET scan etc.. I was diagnosed with GERDS, then had surgery to place a Linx device around my esophagus, this did not help my stomach pain, I had it removed because it was causing Acalasia, I have been tested for Lyme, Celiac and other viral diseases. My RA doctor diagnosed me with fibromyalgia. However, the new FM/a blood test came back negative. as has all the other testing. On Dec. 5, 2016 finished 2 weeks of a Nevro spinal cord stimulator trial in hopes that it would help with my back pain. Unfortunately is did not give me much relief. I had the wires removed on Jan 10th.
I developed a Seroma following the removal, it is now Feb. 17th 2017, and have been back 2 times to have the drain removed and then replaced again.
I went to The City of Hope pain management for 2nd opinion they recommended Ketamine Infusion at USC, and possibly Fecal Matter Transplant,
Very recent tests: Bravo Ph 96 hour study, barium swallow, CT with contrast and Endoscopy Ultra Sound of Pancreas. Ph study showed severe acid 24 hrs. a day, CT showed 3 and 5 mm cyst on Pancrease, Endo Ultra sound showed more than one, Doctor said follow up next year with MRI
I have difficulty walking, talking and doing anything I used to enjoy.
In September 2017 I was diagnosed with prostate cancer, with a Gleason score on 6. I believe I am going to have it removed in late Feb, early March.
I had a Stretta procedure done on Dec 22, 2017, I am four weeks out from that. It has helped my LPR a bit, but stomach pain is still horrendous . Had prostatectomy 0n April 3, 2018. Unfortunately I have Peri Neural Invasion. At 4.5 months PSA less than -0.1.
Stretta did not help. Abdominal pain has only grown worse. No answeres from anywhere!!!
Still struggling with gut pains and neuropathy. Had a TIF Procecure and Hiatla Hernia Repair on April 16th 2019. I am 12 weeks out. I hare only gotten worse. I am now on a feeding tube due to weight loss and the inability to ingest solid food.
I am amazed that out of 30 Doctors in the last 6 years none of them have been able to give me a solid diagnosis and treatment plan.
I am now mostly home bound, in pain 24 hours a day. This is a condensed version of what has happened to me, I hope you can help me.