Help Nikki recover from Severe Brain Pressure & Blood Clots

Unnormal pressure around the brain... blood clots in the brain... West Nile...

Idiotic Intercranial Hypertenion.

Severe Allergic Reaction to a blood thinner, and now pneumonia in the lungs (which luckily we found early). I keep finding every hurdle to jump over but I am a fighter and Ill get through this one way or another.

Iam not good at asking for help, but with the encouragement of a good friend, any help big or small is beyond appreciated. Life is tough, but sometimes it takes a village when life throws big curveballs at you like this unexpected medical issue, and I am beyond lucky to be alive at this point.

My name is Nikki, and I am 39 years old. I have been overall healthy, staying very active in my children’s lives. I have two kids of my own, a daughter and a son, and sometime in the future, I will gain a stepdaughter. Last October, I started to get really bad headaches, to the point my head hurt a lot. I would get an occasional stress headache, but nothing ibuprofen would not get rid of. Some nights I told my family I felt like my head was going to explode; there was no other way to put it. I finally decided to see my medical provider, and she agreed this was strange for me, so she ordered an MRI of my head to be on the safe side. Within 45 minutes of leaving my brain MRI, I got a call that we needed to talk. The radiologist said I had idiopathic intracranial hypertension. He could see I had major pressure around my brain! Within 24 hours of the nurse calling me, I started to see an eye specialist, which sent us directly to a neurologist 48 hours later, and doctor after doctor, having every test done in the book. The normal pressure around a human brain should be 5mm to 15mm. Mine recorded at 26mm during my lumbar puncture at the beginning of November, which was super high.

All these doctors were in Kearney, which meant many trips were made going one hour one way, many times a week to get answers and help. They started me on blood thinners and took my work schedule down to no more than 4 hours a day if I was even able to function to go to work. The headaches continued well into the next month, and more MRIs were done, and one showed I had three blood clots now in my brain, one of which was almost dissolved, leaving two active in my brain, right before Christmas. I was terrified, but they continued to keep me on blood thinners and added a couple more medications, and I started to spend a lot of time in infusions getting necessary medications and fluids. Come February, I wanted more answers as I was done feeling awful, so we went to Omaha to get a second opinion, which is a 3-hour drive one way. I was incredibly lucky and saw an amazing neurosurgeon that got us in right away. I was in bad shape, but he waited to see what my results of my MRI/MRV would show at the beginning of March, which we were hopeful would not match the CTA scan he ordered in February, but they did. He found that there was no flow whatsoever on the right side of my brain when the contrast attempted to do its job during the scans. Late March, he ordered up an angiogram, which we traveled to Omaha for, and then it was certain I needed brain surgery right away, which was done a week later, in April. When they opened me up for my angiogram (scope of spine and brain), my pressure around my brain was now measuring at 49mm!!! This was out of the roof and too high to ignore. Two blood clots dissolved on their own, but I still have one right now on the right side that is so clogged they cannot even get to it. The neurosurgeon went in and placed a stent on my left side, hoping to unclog some of the backed-up area of the right side and to get things flowing as much as possible. I was terrified once again, as right before surgery, he informed my family and me that the blood flow from my brain to my heart was also slowing, therefore my heart was in danger also. We are hopeful with the stent placement it will help unclog that area, and they will eventually be able to break the clot up. When surgery was complete, the pressure in my head went from 49mm to 0mm! This was incredible, and they could not believe how well my body responded. My heart rate went from running as high as 140-150 sitting still back down to under 100. I spent 2 days at the hospital but got to come home as I was conquering all steppingstones they wanted from me at the hospital! God is so good!

Still a long road ahead of me, but I am blessed to be here. The only thing that has shown up to be an active cause of this neurological issue is I had a strand of West Nile show up in my spinal fluid antibodies back in November. They are thinking I was bit late summer of 2024, but it is so crazy I was never sick until the headaches started to get me. Through this process, I have swollen like a balloon as all the pressure and fluids have not been flowing properly, so they backed up in my system, and therefore I have gained 40 lbs. from this illness. I have had 0 hours of work since the last week of March and hope to go back sometime the week of April 28, but if and when I do, I am still only allowed to work part-time, which is 4 hours or less, depending on how I am feeling.

Life hasn’t stopped, so with Christmas, kids' birthdays, bill after bill, kids' events, groceries, traveling back and forth to doctor appointments, and so forth, it’s been extremely tough living off one income that has also been shortened as Jake has been more than amazing and has been by my side through all of this from the first day, which has made him drain his sick/vacation time, leaving work with no pay during his down season, which is already extremely short.

Now, we wait 3 months (which I do follow up with my neurosurgeon every two weeks), and I will get more scans to see what happens next. All I can do is pray and know the Good Lord has me and my family. I have been divorced for 10 years, but I live with my two kids and my best friend, whom someday I hope to marry.

I am lucky to be here, so I have nothing to complain about. Many days and nights of no sleep with the fear of not waking and leaving my children behind, lots of tears, and worry, yet I cannot help but be thankful that God has a reason for this, and he still has me here.

We genuinely appreciate you all, and God Bless.