- CASE FILE
in 2018 I suddenly went numb on my right side. after a cardiac cath, DVT, and surgeries, MRI's, I am still numb and have pain, and brain fog
ABOUT THIS CASE FILE
I have asthma and in January 2018 I started with a horrible asthma exacerbation that lasted 2 months. I went to urgent cares because my doctor couldn't see me and was prescribed many rounds of antibiotics and told to follow up with my doctor and use my inhaler ever 3 hours. I felt like I broke ribs, After finally getting into to see my docoto she prescribed me phenergan with codeine, more steroids and inhalers, flonase and I got better. March 2018 I started having trouble walking on my right side, moving my foot. Then my right foot went numb, then my right leg, arm and right side of my face went numb without any facial droop. I became weak and my lips became numb. I went to the Emergency room and after an MRI and MRA was told to see neurology for complicated migraines. I have never had a migraine in my life and my head never hurt. After seeing neurology I had a thorough exam which included more MRI's, EKG's, Echoes with bubble studies, Transesophageal Echoes (TEE), and told I had a Patent Foramen Ovale (PFO) , a hole in my heart, and that I might be having TIA's since these episodes like the first day I had symptoms. I was started on aspirin and later changed to plavix to keep my blood thin in case I was having TIA's. I would feel out of it, sensitivity to sound and it would last anywhere from a day to three days. One episode a week turned into 3 a week. I saw cardiology and told that my kids, my job and the fact that I was in school is the reason that this suddenly started, and that I should drink more water and electrolytes. I requested a second opinion and was told that I could have an TEE to look at the PFO. The TEE was not recorded it was just a written report saying it was "small" . I later saw an interventional cardiologist who agreed to do a cardiac cath to close the PFO since TIA's couldn't be ruled out. August 2018 I underwent a cardiac catheterization. The cardiologist couldn't find the PFO that was previously seen and I was devastated knowing that nothing would change and my symptoms wouldn't improve. My leg was sore the days following my heart cath and I assumed it was normal along with a bruise that started as the size of a lemon, progressing to the entire inside of my thigh as the week continued. I started to be unable to stand on my right leg, with standing only for a few minutes at a time. My leg looked tan, blotchy and it seemed swollen.After looking in the mirror as I was concerned I had a blood clot, both my husband and I noticed My thigh, and calf were larger than my left, my right leg was discolored and when measured, my thigh was 1 inch bigger than my left. I decided I should probably go to the Er to rule out a blood clot so we could sleep better. After an ultrasound confirmation that I not only had a blood clot in my femoral vein, but I also had an ArterioVenous fistula (AV fistula) that was created during the heart cath. I was admitted and given heparin and the next day an IVC filter was placed to prevent the clot from going to my heart and lungs. I was later told I would have an ultrasound with pressure applied to attempt to close the AV fistula to avoid surgery, followed by an ultrasound to confirm closure in the morning. The tunnel didn't close, so they kept me one more night and told me I would be discharged the next day and to rest my leg so by body can break up the clot, stop the plavix and follow up with vascular surgery in a week. I didn't feel comfortable with this so I requested another ultrasound before I went home to be sure the clot wasn't bigger and the tunnel was closed. The ultrasound revealed that the clot was bigger, had moved up my major vein, the vena cava, and I formed another clot and the AV fistula wasn't closed. The vascular surgeon called and told me that the surgery that was too risky to do is now a necessity and I would go in the morning. That next morning I went to surgery and the femoral artery and vein were repaired. I was discharged four days later home and told to follow up with the vascular surgeon and I would start taking xarelto for 6 months to avoid further clots. I could barely walk without pain so I went home with a walker. I am 33 years old. A week later I followed up with the surgeon, and my incision was examined and was healing nicely. Now was the time to get the IVC filter out. I went in a week later for the removal and a venogram to assess the healing of my femoral vein since it was terribly scarred and injured as noted during surgery. The vascular surgeon was unable to remove the filter because it was stuck. I was told that an expert radiologist would remove it during a second attempt the following week and someone would call me to set that up. 6 hours after being discharged home, I became bright red, pale, wheezing and had lip swelling and throat swelling and nausea. As an RN, I know these are symptoms of anaphylaxis, and tried to talk myself out of it. my mom and friend convinced me that I need to go to the ER. I was treated with benadryl, albuterol, steroids, epinephine and after no improvement, admitted to the hospital again for routine administration of steroids and benadryl. I went home the next day. The itching and burning I had for the days to follow landed me in the ER again with excruciating pain and unnerving itching. THe ER doctor heard my story and apologized saying that it was probably a reaction to contrast and this type of systemic reaction could last for weeks. I went home , sat on ice packs continually until I was seen by a new primary care doctor the next day. Thankfully i found relief with his suggestions to use, hydroxizine, famotidine and zyrtec, singular and ativan and then prescribed me a strong two doses of steroids for premedication for the second attempt of the IVC filter removal. When the say came for sedation for the IVC filter removal, I took my steroids, and also took zyrtec, famotidine before the procedure since the same contrast would be given for attempt number two. I was assured there was no way I would react again since I was well premedicated. 5 minutes after the IVC filter was successfully retrieved, I started itching, my throat started swelling and I started wheezing. After 6 hours in the recovery unit I was discharged home and continued on a regimen of zyrtec twice a day, famotidine, and hydroxizine for the next two weeks as needed for itching and swelling. I followed up with an allergist and it was confimed that I have a rare delayed anaphylaxis to visipaque contrast that happens to 1% of the population, and rare for it to be delayed by 6 hours after administration for a reaction to happen. I started taking probiotics and magnesuim and meditation and supplements to help heal myself. Combined with the xarelto, my episodes went from 3 times a week to one every 6 weeks. January 2019 came around and it was time to stop the xarelto after an ultrasound revealed no clots and the vein and artery were healing sufficiently. about a week after I stopped the xarelto, I started with episodes again of numbness, tingling, brain fog, double vision, blurred vision and weakness , difficulty articulating words,as I did when everything started, and a week later these symptoms became constant. Present day I have exercise intolerance, extreme fatigue and every part of my body aches unless I take my CBD oil. I have decreased night vision, and double vision and blurred vision all the time in my right eye. I have electricity surging through the right side of my body all the time. It extends from my Right foot, all the way to the top of my right side of my head and face. I have decreased sensation to my right side to touch, however I am extremely sensitve to hot and cold to my right hand. Cold is painful to the bone, and hot I don't recognize until it burns me. I drop things constantly and trip all the time. I have trouble walking and its been over a year and a half with no answers. I have since had another brain MRI, as well as MRI's of my cervical, thoracic and lumbar spine to rule out tumors, disc problems, and lesion for MS. I have had the ELISA test for LYME and it too was negative. I have had nerve conduction studies and EEG's with evoked potentials and all is normal. I have requested second opinions from neurologists who specialize in MS and out side network specialists for LYME literate doctors and insurance had denied them. It has been over a year and a half and I still have no answers. I am a mother of two boys, 5 and 3, I am a wife, and a nurse and I have since finished my bachelor's degree for science in nursing. It is getting harder and harder to get through the day, working my passion as a nurse is getting harder to do and I am fearful that doctors are missing things and because of this, I may end up having to stop being a clinical RN. I want to be active like I once used to be, I want to run half marathons again. I want to be able to spin with my boys and play with my boys without having to worry how many days I'll be hurting after and I want to be able to walk without having to conciously think about the action. As an RN a healthcare worker in westen medicine, western medicine is failing me and I want to a doctor to fight for me and refuse to quit until I have a diagnosis. I want to know that there is someone that recognizes what I am going through and has a solution. I have insurance and I can't even get in to the right doctors who can help me because they are out of network. I have covered a lot of tests, a lot of ground in the past 16 months with research and symptoms like mine. I have been my own advocate and I need help.