Hello! I wanted to provide an update about a surprising turn of events.
Last month, I found a TON of black mold (stachybotrys, aspergillosis, and penicillium) in the home I’ve been living in for the past 2+ years. The picture is in the basement of the house, and is only a portion of the mold that was found.
Some background: I’ve been diagnosed with IJV compression/venous outflow insufficiency and ES. Currently, I have surgery scheduled with Dr Hepworth on Dec 5th.
Last October is when my symptoms worsened significantly and became debilitating. I didn’t realize this until after we found the mold, but that is the same month I moved my work desk from my bedroom on the 2nd floor, to the living room against the same wall (just one level above) as the mold pictured. I work full time from home and was spending 40 hours a week at my desk.
I have of course been going down many rabbit holes related to toxic mold. What I’ve learned is that mold is a hyper-coagulant (it thickens blood), which is interesting because Dr H found more compression near my upper extremities and referred me to a vascular surgeon for TOS eval. But I felt like there was more systemic compression going on since I have had weird vascular symptoms in my stomach and legs too.
I also learned that mold can affect all 11 of your body systems, but everyone reacts to it differently. I’m definitely at one end of the spectrum in terms of having extreme sensitivity. I have other roommates living in the house still who have not been affected at all.
I’ve been out of the house for a little over a month now, and my symptoms have improved significantly. My most severe symptoms were daily-ish pressure migraines/high ICP and fatigue. I’ve had only a couple bouts of high ICP since leaving the house. My fatigue has improved by probably 70% or so. I told my friend the other day that I forgot I was morning person! I had been having very severe shortness of breath, even from simply talking. And that’s totally gone now! Brain fog has improved by about 50%. Many of my other symptoms are still lingering (like digestion issues and muscle weakness). I also learned I have kidney and spinal cord damage (which can be caused by environmental toxins like mold/the mycotoxins it produces), but we don’t know the extent of it yet.
I’ve been in contact with a woman who, like me, has/had venous outflow insufficiency / pressure migraines and severe toxic mold exposure. She’s also a patient of Dr. H. He did sinus surgery on her recently (not a styloidectomy) and she said it has helped her tremendously. It all makes me wonder how many of us might be being exposed to toxic mold that’s causing or exacerbating our symptoms.
I’m still in disbelief that I’m feeling so much better. I’m in the process of following up with all of my specialists (neurologist, nephrologist, ophthalmologist, etc.), but haven’t had any luck getting through to Dr Hepworth’s office. I was hoping to hear what he thinks and if it’s worth it to do any new scans / imaging. Regardless, I do think it makes sense for me to push off the surgery for now given how much better I’ve been feeling. I’m working with a functional neuro doctor to detox the mold from my system, bring down inflammation caused by the mold, and restore the flow in my body (blood flow, lymphatic, etc).
Just wanted to share and would be curious to hear if anyone else here has had a similar experience with toxic mold!
That’s quite a mess! I’m really glad you found that & were able to move away from it & are experiencing such a great remission of your symptoms. I’m actually glad to know how well you’ve recovered just getting away from the mold as I have concerns for one of my family members who may be suffering from mold exposure. He’s moving to a new place & hopefully will see some return of his health & energy though I don’t think he’d go so far as to see a functional medicine doctor for help. 
