Hi, I’m Kennedy, a 30 year-old wife, a mother of three beautiful girls, and a business owner. My health has recently taken a major decline. After multiple ER visits and emergency house calls, we finally got to the road of answers. On May 27th, I had an MRI with and without contrast where I was found to be diagnosed with Transverse sinus stenosis (severe narrowing in both venous pathways to the brain). I am waiting for insurance to approve the surgery to place stents in the pathways to help expand blood flow. On May 29th, it was confirmed through a lumbar puncture that I had IIH. This is idiopathic intracranial hypertension. This is a condition where high fluid pressure builds up in the brain/skull for no known reason. This can cause things such as blurred vision, and in some cases like mine, loss of vision in my right eye that is only getting worse. This also leaves me with chronic head pain.

As if the medical issues stop there, I had been admitted to Tacoma and stayed here for 11 days before discharging my stay here. During this stay, they focused on my IIH, headaches, and syncope episodes that continued to occur more and more. They were still looking for a cause. When this happens, I will mimic stroke-like symptoms and my right eye will droop, if not close, for some time.

On June 9th at 3 am, I woke up unable to move my right leg at all, and it was painful to the touch. The neurologist came by and ordered my 3rd MRI that had included the neck, which we had not done before. This is to check for any sign of worsening progression along with lesions, stroke symptoms, and signs of MS, They also ordered ultrasound to see if I had any blood clots in the leg. Ultrasound ruled out any blood clots to the leg. However MRI showed signs of built of fluid related to IIH. I have a follow up with a team of doctors that include neurologist to get a better understanding of how to manage my IIH and figure out what else is causing the symptoms of the weakening to my right side of my body. I will also be seeing an ophthalmologist that will look behind the eyes and study more into the eye diseases and look into the vision loss of my right eye along with any pressure built-up behind the optical nerves.

during my MRI, we also decided to do a spinal MRI and in this we did find a lesion. We are not worried about it at this time as it is not believed to be a cause of anything and will be followed up in outside of here.

Once being discharged, I went home for a few weeks. My symptoms got worse. My leg pain worsened. Still unable to walk or more it, the pain unbearable. My right arm and hand, so incredibly weak. My syncope episodes were happening more times in a day then I could count and occurred with awful and more intense chest pain then before. I followed up with a doctor in hopes to fly to Disney land with my family for my daughter’s dance competition. Hoping that they would tell me that it was safe for me to fly with having all of the health complications that I did.

During this appointment, it was very apparent the worry that the doctor had when looking at the reflexes in my right arm, nearly non existent. My leg, some parts without moment, and the rest in so much pain. He pulled my primary in (she was booked far out) and they told me to head to St. Pete’s immediately where they had a team of neurologist there and that they didn’t think I could wait until my appointment with my neurologist (a month out).

So I went up. As soon as I got there I barely made it to the front desk to check in, out of breath with my walker. They check my vitals and immediately take me back. My heart rate was too high and my blood pressure not where they wanted to see it. The doctor came in and read my charts from my previous hospital stay at Tacoma general and all of the information that my doctor had sent to them. He ordered a CT scan immediately. This time not just of my head, neck, but also my chest. Which was never done before and also we had only ever done MRI previously and MRA. It wasn’t long before I told I was being admitted and that I had a pulmonary embolism.

This is part of what was causing my syncope episodes to be so extreme along with the severe chest pain and shortness of breath I was having.

I stayed here for another 11 days. Here I was under AMAZING care. I was doing OT and PT everyday. I was diagnosed with POTs syndrome during my stay and confirmed the diagnosis at the rehabilitation center I was then discharged and sent to stay at for another two weeks before going home. My case is pretty severe. Causing syncope even with the slightest change in movements. From laying to sitting. From sitting to standing. My resting heart rate sits at a range of 96bpm to 136bpm.

During my stay at St. Pete’s, I was diagnosed with CRPS (complex regional pain syndrome). This is what causes the weakness, loss of sensation, and pain in my right upper extremity. And causes hypersensitivity, pain, weakness, and paralysis in my lower right extremity. It’s a very rare condition that has no cure. But with the right treatment, care, procedures, medication, and therapies, daily life can be help managed.

As of right now, I am still unable to walk. I am still in pain everyday. (CRPS is known to be the most painful disease known to man). But I am fighting. I am working hard. I am keeping faith. I believe I will walk again. We are keeping an eye on my left leg and left arm as people who have CRPS, the pain and symptoms tend to spread to the other limb or extremity.

I am doing physical therapy and occupational therapy. I am awaiting appointments with a pain specialist to help manage CRPS, and another to help with the pain by doing a lumbar sympathetic block, which is a medical procedure. I am doing this in hopes that it will help with the daily pain. I am also waiting for my appointment with a nuero ophthalmologist to go over why I am losing the vision in my right eye at a high rate. I will continue to follow up with my regular neurologist along with another in Swedish. I will be doing a nerve conduction study again to check my upper extremities and see what’s going on with the peripheral nerve damage in my right arm. Then following up with a pulmonologist to keep an eye on the blood clot in my lungs to see how long I need to be on blood thinners for and to ensure there is no more clots.

With being a business owner, my income is based on what I make in a day from my lovely clients. This is the longest I have ever been out of work, literally the entire summer. Nearly two months away from my kids and home. Then 3 months I have been out of work. I unfortunately have not been able to get back to regular day-to-day life right away, and I will have a long list of appointments with different specialists to get things going to find the right treatments, pain management, procedures, etc. My amazing husband hasn’t left my side. As much as his work has been so understanding, he had also missed out on his financial income by being there with me for some of the time, and the rest with our kids. We still have life, kids, and bills to pay, along with the long list of medical bills we will be drowning in.

This is my last resort for help. But I am reaching out to my community in this time to please help if you can. I am so appreciative to anyone who has reached out during this tough time with words of encouragement and support alone. If you can’t donate, please, please share.