This is a long post, so I apologize/thank you in advance for bearing with me. Vp shunt placed in November 2012 for IIH.
About a year ago, I started having some mild personality changes. I was getting irritated very easily, overly emotional, and it was affecting the relationship I had with my toddler. I reached out to my primary doctor, who put me on Wellbutrin, which I had tolerated just fine before I had my daughter. This time, it put me in such a state of anger (unlike me) that I had to stop taking it and seek psychiatric help. I was told I had bipolar ll, and put on Latuda. Shortly thereafter, the nausea, vomiting, and loss of appetite started, which we figured was due to the medication, so I was prescribed Zofran. Ironically, I have had stomach issues for most of my adult life, but only in the form of chronic diarrhea. I stopped taking Latuda because it didn't help my "bipolar," and expected the other symptoms to subside once I stopped it, but they only got worse. I was having to use Zofran multiple times per day in order to keep from vomiting. In the midst of all this, I had reached out to my gynecologist to see what I could do about my periods, as Wellbutrin had always made me bleed often in heavy amounts. He ordered an ultrasound, which only showed moderate ascites. I explained the unintended weight-loss/loss of appetite and was given a CT scan. This is what the report said, and I received a call from the gynecologist 2 hours after my scan:
1. Contiguous wall thickening, mural hyperenhancement, and
engorgement of the vasa recta involving the rectum and sigmoid colon
compatible with nonspecific proctocolitis. Given distribution findings
may represent ulcerative colitis. Infectious colitis could appear
similar. Ischemic colitis is unlikely. GI consultation is recommended.
2. Moderate free fluid within the pelvis may be reactive secondary to the colitis; however, VP shunt catheter is
present which could account for some of the fluid. No abscess is evident.
3. Borderline splenomegaly. No lymphadenopathy.
4. Small volume nonspecific gas within the urinary bladder may relate
to instrumentation, correlate with history.
That was in November of last year, at which point I had lost 30 lbs in 2 months. In December, I had an upper/lower endoscopy, and was told I hold mild swelling of my stomach lining, most likely have IBS, and there was nothing more he could do for me. It brought me right back to all the years of being blown off before being diagnosed with IIH and having a shunt put in, so I stopped seeking answers.
Fast forward to now... I am 140 lbs. Before all of this, I was 220. Symptoms now include: Loss of appetite, vomiting, diarrhea, intermittent upper belly distention, intermittent severe right upper quadrant pain, neck pain, pain between the shoulder blades. I started having more concerning neuro symptoms besides the mood swings the last few months, which include periods of confusion, headaches, dizziness especially when I change position, consistent left sided hip/thigh/groin numbness that never goes away, right ear pressure/hearing changes with tinnitus, paranoia, extreme mood swings, irritability.
It wasn't until recently that I thought maybe it had to do with my shunt. Most of my CT scans of the brain after shunting have said "Near complete total collapse of lateral and third ventricles. Correlate for over shunting."
Every time I asked about it, they said my scans were normal and they frequently see small ventricles after shunting. However, I can't help but think all of this has something to do with the shunt. I do have an appointment with my original neurosurgeon in hopes that he can shed some light, but I'm already expecting him to tell me that "everything is fine."
Any advice is appreciated.