While there have been no published research on the effect of tonsillectomy on PANS or PANDAS patients, there has been unpublished findings and anecdotal evidence that show tonsillectomy may have benefit. Many PANS/PANDAS patients have damaged or cryptic tonsils, but the potential benefit of tonsillectomy is not limited to patients with those tonsil characteristics. In an unpublished research study done at Georgetown Medical Center, PANDAS patients had their tonsils removed, analyzed, and the children subsequently tracked for over six months. The tonsils relative to non-PANDAS patients had many pathogens, most prominent being staphylococcus (staph). Streptococcus pyogenes was not found in PANDAS patients but was present in non-PANDAS controls. Other notable pathogens included MRSA, E. coli, Pseudomonas and Serratia marcens. The absence of Streptococcus in the PANDAS cohort suggests that once the patient has been “sensitized” other pathogens can induce neurologic symptoms in susceptible patients.
In addition, the tonsils belonging to PANDAS patients contained elevated levels of TH17, indicating a consistent immune response to the pathogens lodged within the tonsils. TH17 has been found in animal PANDAS research to be a potential agent for opening the blood brain barrier, allowing inflammation in targeted regions of the brain.
The Georgetown study and physician experience indicates that removal of the tonsils can provide remission of PANS and PANDAS symptoms for some patients. There is no marker to determine which patient a tonsillectomy will result in remission of PANS/PANDAS symptoms.
A clear benefit of tonsillectomy that was found in the Georgetown study and further observed by practitioners who see many PANS/PANDAS patients, is that those PANS/PANDAS cases that have undergone tonsillectomy, have a significantly lower chance of recurrence post-immunotherapy such as IVIG. Since immunotherapy suppresses the potential cause of basal ganglia encephalitis and in some cases like IVIG “reboots” the immune response, then removing a consistent infectious trigger housed within the tonsil or removing a repository for new pathogen agitators would most likely be beneficial.