Experiences with Central DI Following Surgery
By "Caroline"

Diabetes insipidus came to me later in life.

I was 45 years old when I had surgery for a recurrent meningioma (a benign brain tumour) that had first been removed five years earlier. The surgery for this recurrence was much more difficult. Since the meningioma had been close to the pituitary, it was almost unavoidable that it resulted in some damage.

The pathways for transport of antidiuretic hormone are closest to the surface and more susceptible to damage during surgery; sometimes this is transient, and sometimes not. In my case it proved to be permanent, but treatment is initially postponed to see whether the hormone production might not come back. This was quite eventful, especially since I was rather ill and confined to a hospital bed. One night I went into hypovolemic shock (cold, shaking), since my IV fluids could not match the enormous urine output from my kidneys.

A dDAVP injection solved the problem. However, there were later concerns that my thirst center had been affected by the surgery, and I was then told to drink a fixed amount of water every hour. Eventually I became hyponatremic (i.e., low blood sodium level) due to the excessive fluid intake, which made me very sleepy. Eventually I was put on regular dDAVP treatment and could drink as I felt, and the result was immediate.

Since that time, about five years ago, I have been on a combination of oral and intranasal dDAVP, and it has worked very well. The tablets can be more unpredictable than the nasal sprays, but they were advised because my nose had had quite a hammering during all the surgeries, and there was a doubt whether I had enough nasal mucosa left to absorb the spray. Apparently it has, but I have stuck to the routine of a tablet in the morning and a nasal spray at night (because it works more immediately). Sometimes I still feel very thirsty during the day, and I was told that then I could take an additional nasal spray. It has worked fine, and living with DI has not been a problem. However, I remain very careful that I always have a dDAVP spray with me wherever I go - just in case, because the memories of the enormous thirst remain vivid. Furthermore, I always have information on me about my need for this medication, in case of an accident. Probably a wise thing to do for all of us.