Hi, I'm Lyra and I'm new to this forum. In 2016, at the age of 25, I suddenly experienced persistent double vision and headache. I visited an urgent care thinking I had a migraine, but was instead rushed to the ER of the nearest major hospital and told I likely had a blood clot in my brain. They performed the first of many lumbar punctures, which read a pressure of 37, before sending me to an MRI. I was diagnosed with pseudotumor cerebrai shortly thereafter and kept in the hospital for about a week to monitor my pressures with a daily lumbar puncture and drained fluid that way. I should say that before this I ate a healthy diet, exercised every other day and my BMI has been between 16 and 20 my entire life. I was discharged on Diamox and told this would relieve the symptoms and to carry on with my normal routine. However, I soon experienced serious side effects from Diamox, which although it did lower my pressures, also attacked my kidneys and I was again hospitalized after only a week on Diamox to treat Renal Tubular Acidosis Type 2. As I could no longer take Diamox and my kidneys were too weak to try another, similar medication, my neurosurgeon decided to place a VP shunt from my right frontal lobe down to my lower left peritoneum. I was glad for the surgery and told they would drill a small hole through the very top of my skull and work from there, leaving me with a penny-sized area of shaved head. When I woke up, half of my head was shaved with an incision shaped like a question mark and staples held together the incision to my cranium. I also had a 4-inch incision on my lower abdomen. My neurosurgeon explained to me that the ventricles in my brain were much smaller than they expected, even though they ran a scan, and so more of my skull needed to be opened in order to correctly place the shunt. Also, since I have had so many unrelated abdominal surgeries, the neurosurgeon did not feel comfortable threading the end of the shunt through so much scar tissue and mid-surgery called for a general surgeon to perform the end of the procedure, which he did using an open method which explained the abdominal scar. They set the shunt at 15 and kept me one more night before discharging me. I thought everything was done and settled.
Beginning about 2 weeks after the insertion of my VP shunt, I began to have involuntary muscle contractions from my right shoulder up to my chin. I hardly notice them, but they happen so frequently that others stare and those who know me well find it unsettling. I originally went to physical therapy as my right trapezius muscle was constantly spasming and the right side of my face began contorting as well- it looks like I'm shrugging my right shoulder every few seconds and the right side corner of my mouth lowers in a grimace as my right eyebrow shoots upwards. I did dry-needling at PT for 4 months with no relief. I've tried torticollis bracing after a separate neurologist diagnosed me with torticollis. I've also received a diagnosis of essential tremor after my hands began shaking so badly that I have to drink everything through a straw since I can't hold a cup. My work is suffering as my typing skills have bottomed out. I've tried Botox injections about 4 times, all guided by radiology so they don't accidently hit where my shunt runs. I can feel the tubing behind my right ear and I feel like all of these symptoms are related, but no doctor can tell me how. Eventually my diagnosis of torticollis changed to cervical dystonia. There is quite a bit of pain from my shoulder muscles being in constant contraction, but the worst part is that I'm a social worker and I meet new families each week with whom I'll work together for years. I hate the possibility that their first impression could be that I have something contagious or am not up for the job. It doesn't help that I have to use modified large and heavy writing implements because of the essential tremor and even then it is very difficult for me to write anything legible. Most physicians I approach start digging deep into my medical history, which is substantial but I also think is unrelated. I never hold any information back, however I also want them to realize that these symptoms started almost immediately after the shunt placement and connect possibilities back to that. My neurosurgeon dismisses that any of this could have a connection to the shunt and I don't feel my neurologist actually pays attention to what I'm trying to say. My primary care doctor is wonderful, but he's admitted that he does not know for sure if the shunt began these symptoms, accelerated them, or perhaps is not connected at all. Any help or similar stories that I could get from this forum would be wonderful, as I've only met two people, that I know of, who've had shunt placements for pseudotumor, and both had vastly different situations than my own and both improved immensely after substantial weight loss, which would not be advised for me. In the spirit of staying open-minded and giving any information which might be helpful, I've included a list of only the most prominent of my other syndromes/disorders/conditions and the corresponding medications. I've edited it for length. Thank you so much to anyone who's actually read all this way. It was a lot longer than I originally intended.
Genetic Mutation: Causes ultra-rapid drug metabolism in all medications with hepatic metabolism
Bipolar I, OCD, PTSD, GAD, Panic Disorder- Lithium, Seroquel, Paxil, Vyvanse
Cervical Dystonia, Essential Tremor- Tizanidine, Neurontin, Baclofen, Valium
Ongoing issues with: pyruvate kidney stones, chronic pancreatitis, IBS, hereditary pigmentary glaucoma, non-menstruation related anemia, hypermobile joints, scoliosis, Vitamin D deficiency (taking supplements), benign heart murmur
GI issues: IBS, severe Peptic Ulcer Disease (necessitating liquid diet) both Nissen fundoplications failed soon after surgery (age 16, 18)
Hx: hysterectomy (age 19), lap chole (19), multiple hernia surgeries (12,16, 18), ERCP-detected narrowed ampulla of Vader (pancreas), 2 stent placements were unsuccessful and surgeons removed the ampulla (age 25)