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tjones181

Pre Op
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Everything posted by tjones181

  1. tjones181

    Help!

    I'm in desperate need of any ideas, doctor suggestions, ANYTHING would be GREATLY Appreciated this is my story! I'm not a troll or trying to scare anyone OUT OF THIS LIFE CHANGING surgery! I did everything 100% right so I would not have complications, but unfortunately I'm just that .00001% a freak of nature unfortunately haha! Here is my story... I had the Gastric Sleeve Weight Loss Surgery December 3, 2014 and since my health has declined rapidly. I have on-going: Chronic widespread nerve pain (Chronic Polyneuropathy) Numbness, Tingling, and Weakness in lower extremities worse on right side Constant shooting nerve pain Insomnia due to chronic nerve pain Chronic stomach pain Nose pain and Chronic Sinusitis due to 31st NG (nasal tube) Difficulty swallowing Constant chronic stomach cramping Constant chronic nausea Constant chronic spitting Chronic Daily vomiting Severe Acid reflux Severe Malnutrition Multiple vitamin deficiencies B Vitamins Deficiencies Thiamine deficiency Severe Anemia Dyslipidemia Severe Neuropathic Pain Arthritis Fibromyalgia On Feeding Tubes since October 2015 11 Abdominal Feeding Tube procedures Gastroesophageal reflux disease. From the moment I woke up from the surgery I've had chronic nausea, issues consuming food and daily vomiting episodes. I've had 11 failed abdominal feeding tubes and I'm currently on my 31st NG nasal tube. I was also on Total parenteral nutrition TPN intravenous feeding for a short time. I am on my tube feeds continuously 27/7 I cannot eat anything without vomiting. I am constantly nauseous and I've become a “spitter” and I constantly spit all day. The tube feeds make me extremely bloated and I am in constant chronic stomach pain and cramping. I vomit stomach acid and my tube feeds daily. The nerve pain started in my toes and the balls of my feet April 2015, in less than a month it spread to my knees and hands left and right side, worse on my right side. Now I have chronic widespread nerve pain all over my body. I had drop foot on my right side, weakness, numbness, and a burning sensation in May of 2015. I was diagnosed with a rare form of Guillain-Barré syndrome. I was treated with 2 rounds of IVIG, I went to inpatient rehabilitation to learn to walk, and write again. Unfortunately I still need the use of a walker and wheelchair for anything more than 50 steps. Also since my gastric surgery, I've had to have multiple surgeries. My gallbladder in Feb 2015, 11 abdominal feeding tube procedures from Dec 2015-Jan 2017, my appendix October 2016, and a abscess surgery that required drains to be placed in my stomach Dec 2015. My stomach is in constant pain. I either am constipated or have diarrhea The pain has highs and lows, but it is constant. When I use my feeding tube machine to get my nutrition I get very bloated and I have horrible cramping. As of recently I'm rejecting my tube feeds, they make me throw up violently! This makes all daily task near to impossible! I only leave my house to go to doctors appointments. I have become very withdrawn from all family and friends, i have zero desired of social interaction because of my extreme anxiety and depression. I've lost over 200 pounds to lose my ability to walk, eat, work, and just having a life! I would estimate that I need assistance with 90% or more of my day to day normal activities. Most days I'm so uncomfortable and in so much pain I can't leave my bed. I'm am miserable! I'm doing everything I can and I'm not getting any better I feel like my doctors are just trying to treat me not fix me I'm 28 and this life sucks! I don't smoke, take narcotic drugs or drink alcohol! Thanks for reading my story please share and comment! Tiera
  2. I had the Gastric Sleeve Weight Loss Surgery December 3, 2014 and since my health has declined rapidly. I have on-going: Chronic widespread nerve pain Chronic Polyneuropathy Numbness, Tingling, and Weakness in lower extremities worse on right side Insomnia due to chronic nerve pain Severe stomach pain Constant cramping Constant nausea Daily vomiting Acid reflux Severe depression Sever Anxiety Disorder Chronic Migraines Severe Malnutrition C-Pack Feeding tube Stomach J-Tube Feeding Tube surgery scheduled for December 1, 2015 I HAD NONE OF THESE ISSUES BEFORE THE SURGERY! The nerve pain started in my toes and the balls of my feet April 2015, in less than a month it spread to my knees and hands left and right side, worse on my right side. Now I have chronic widespread nerve pain all over my body. I had full on drop foot on my right side in May of 2015 I went to Mary Free Bed for In-patient rehabilitation. My toes feel like they are going to explode from the constant burning and stabbing The ball of my feet feels like I'm stepping on hot needles I have numbness and and tightness in my fingers My knees are especially painful on my right side, they have a constant burning and stabbing pain. My right knee and lower leg is becomes very swollen, it feels extremely tight, and my whole lower right leg is on fire and it is warm to the touch a times of extreme pain. My hands feel like I'm holding them the on the eye of the stove, it is worse on my dominant right side. I also have shooting nerve pains that come at random and feel like fire shooting through my body The pain has highs and lows, but it is constant. This makes all daily task near to impossible. The worse of it is the extreme numbness, tingling and weakness in my lower extremists and also now my right hand a forearm. I have little to know feeling or reflexes from my waist down. I cannot walk without the assistance of a walker, I have had numerous falls due to sudden numbness in my legs and knees, also my knees have just given out numerous times. My legs feel like they are being weighed down by cement. It is extremely hard to lift my legs especially on my right side. I become fatigued walking within a few minutes. I now use a wheelchair primarily. This makes my life impossible, because I never know when my legs are going to decide to give out. This has caused me to develop a extreme anxiety of leaving my home. I only leave my house to go to doctors appointments. When it is time for me to leave my house for any reason I become short of breath, and dizzy. I usually have to breath into a paper bag to calm myself before I can even get into a car. I've lost 176 pounds in less than 12 months to lose my ability to walk, work, and just having a life! I now live in a prison of cronic pain and feeding tubed. I would estimate that I need assistance with 90% or more of my day to day normal activities. They have tried every drug and nothing has worked to eliminate my chronic nerve pain, numbness or the weakness, my condition has only worsened. Is anyone else having these issues? Please reach out to me I'm in extreme need of support, understanding, and answers. I'm only 26 and I feel like my life is OVER! I had my surgery in Grand Rapids, MI at Spectrum Health Weight Loss Clinic. The surgery was performed by Dr. Holman (the butcher)
  3. Yes I over researched. She is supposed to be the best in Grand Rapids. I had no neurological issues before the surgery or any family history of nuro issues. So the surgery is thing at this point they can contribute it to. Mayo Clinic did a study from 2007-2010 about Nuro issues after bariatric surgeries, but the doctors at University of Michigan told me they have never seen such widespread nerve damage.
  4. pre-op Sep 2013 post-op Oct 2015. This me today with the feeding tube core pack
  5. Yes several times it was low but now it's under control and I've worsened. My B6 was also low and that also better.
  6. Thanks so much Tiny Tink, I have but still no real answers or a cure
  7. I saw a nuromuscular neurology specialist Monday they are running lots of test and I'm also planning to go to Mayo Clinic. I've only been officially diagnosed with cronic widespread neuropathy
  8. Thanks in Advanced for any help you can offer
  9. tjones181

    Guillain-Barre

    I was treated with IVIG, but I was diagnosed with a Guillain-Barre variant ASMAN
  10. tjones181

    Guillain-Barre

    Has anyone had Guillain-Barre disease or any variations? Since having the gastric sleeve?

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