The PNA recently asked for feedback on questions you’d like to have answered. Below are some questions from one of our readers, each followed by an answer from Dr. Manish Aghi, an eminent neurosurgeon at UCSF and a member of the PNA.
Question #1
I had a large pituitary adenoma – twice. It was apparently there for years, as symptoms date back to 15+ years before diagnosis. I’ve had two surgeries. When there is a large adenoma (mine was 3.5 cm) and it is very hard (mine was extremely fibrous, like a piece of raw ginger), and squashing of the hypothalamus and the bottom of the two brain lobes by the tumor over a period of many years, can that damage the hypothalamus? Does the hypothalamus “recover itself” over time, once the tumor is removed? Why don’t pituitary doctors etc. talk more about the whole HPA?
Answer #1
We have seen some examples of large adenomas causing compressive injury to the hypothalamus – there is some recovery capacity after surgery but these cases are rare enough that it is difficult to quote the chances of meaningful hypothalamic recovery after surgery.
Question #2
Why do many post-surgical patients still have some symptoms after tumor removal? For me, I have chronic pain, chronic inflammation, headaches, body temperature problems, and ongoing fatigue. I hear this from other pituitary patients all the time, but the medical establishment calls us “cured.” Seems to me there are long-lasting effects in some patients. Who is studying this? How is it quantified? Are there treatments to consider?
Answer #2
There are certainly some post-surgical patients who have symptoms after tumor removal and the patient is correct that we must not lose sight of these patients and merely consider them “cured.” If the symptoms were present preoperatively and don’t get better after surgery, they may be unrelated to the tumor, and this can be investigated by working with an endocrinologist or other specialist – we have certainly other problems in our pituitary patients such as fibromyalgia, polycystic ovarian disease, etc. An endocrinologist can also help determine if the patient’s gland function can be better optimized after surgery in case the symptoms are related to hypopituitarism that was either present preoperatively or is a new postoperative deficit. There are studies in which quantitative surveys looking at quality of life have documented some specific axes of deficiencies in some nonfunctional and functional adenoma patients before and after surgery, but these studies are descriptive and don’t necessarily give us any insight into the cause of these problems or how best to treat them.
Question #3
How does one go about “fine tuning” hormones after surgery? I was tested after surgery and every six months since, and my hormones are all within range – but just barely. Is micro-tuning an approach that should be considered, to bring my hormones into the middle of the zone? I am two years post-surgery now. My endocrinologist is in Los Angeles and I am in another state, and she (understandably) won’t treat me from afar. I can’t seem to find a qualified endo anywhere here, and my internist has tried looking too. Ideas?
Answer #3
There are times when being at the low end of normal but being symptomatic may require a trial of low dose hormone replacement but that is a decision best made working with an endocrinologist. Check the PNA’s site www.pituitary.org for listings in your state.
