PANDAS and Sinus Surgery

[MarcyJ]

Has anyone had their PANS/PANDAS child with Acute sinusitis have sinus surgery and what was the outcome. We see top PANS/PANDAS doc out of state our son has strep and acute sinusitis the strep titers are coming down form 800 to 236 with augmentium but he can't treat the sinuses with antibiotics so we have to see a PANDAS friendly ENT next week and its been almost 7 years of trying to get our son better so I am thinking sinus surgery ( both my husband and myself had this done) genetic condition. Anyone have any kiddos with PANDAS or PANS have this surgery done? I would love to hear feedback. We are seeing Dr. Donald Keamy at Mass Eye and Ear next week.  Thanks so much for any help to ease my mind at this point I am almost like take the tonsils out and do the sinus surgery I just want it all out NO more infections I am so sick of this condition!!!! 

[MomWithOCDSon]

MarcyJ --

You might try reaching out to a forum member who goes by the name Kimballot.  Here's a more recent thread posted by Kim with a summation of the family story:

Kim's kid underwent sinus surgery and, as I recall, it kicked off a road to pretty much full recovery.  Probably have a lot of information and experience to share along these lines.

All the best!

 

[jan251]

We did the sinus surgery in Sept.  He needed to be fixed in there anyway.  We saw a rhinologist, a sub-specialist of ENT, who used the most modern computer-guided techniques, no splints, no packing, back at school 4 days later.  He was stuffy for a few weeks (which was not unusual compared to how he was before that, so he didn't complain much).  The first week was the hardest.  The culture of infected areas in the ethmoid and maxillary sinuses didn't yield anything, unfortunately.

No improvement in OCD, but I have no regrets.  His dad could use the same surgery

Three months later, his ASO was down into the 200s, the lowest it's been since our PANDAS adventure began >3 yrs ago.  (Had tonsils out last spring.)

Edited January 5, 2018 by jan251

[MarcyJ]

Thank you so much for the info. Was it a long recovery our son has been on antibiotics since March 2016 so we are hoping if we go that route he will be covered in the antibiotic  route anyways. Thanks!!!! Did your son have acute chronic sinusitis did it get rid of it for good? Thanks so much!!!

[jan251]

My son had lingering infection (doc found pus in the sinuses that did not show up on the CT).  But, he did not have official chronic sinusitis, just post-nasal drip.  It's hard to say whether that has resolved.

Full recovery is said to be 4-6 weeks, but it was really the first week or so that was the most stuffy (swollen inside from the surgery).

[MarcyJ]

We may have the tonsils out to even though( strep) titers are down to 236 from 800 in March 2016. We might as well remove tonsils ( Strep and the sinus surgery at same time) Both cases of infection . How was the tonsils surgery ?

 

 

[jan251]

Sinus surgery was easier than the tonsil surgery (my son is 14 y.o.).  Tonsil surgery went ok, just that the recovery can be a bit painful in the first 7-10 days.

The rhinologist was annoyed that the ENT who did the tonsillectomy had not looked at the sinuses (our immunologist ordered sinus CT a few months after the tonsillectomy and then sent us to the rhinologist).  Rhinologist said sinus and tonsils should have been done at the same time.

Edited January 6, 2018 by jan251

[carolyn]

Our son is a patient at the Stanford PANS clinic and he had the sinus surgery nearly 4 years ago.  It greatly improved symptoms for him,  I know every child is unique in what treatments are helpful.  

[MarcyJ]

HI. We saw a PANDA specialist ENT and he is going to remove both the tonsils and adenoids the beginning of Feb. He said the actually don't do sinus surgery for acute sinusitis. He said the way it works is 

Tonsils come out as the tonsils are the source of all strep infections we need to get ride of the source of the strep infection

and the Adenoids are actually the source the of where the sinus infection comes from. While he is in there he will make sure he takes a look at the sinuses to see if there is anything suspect looking that he can do but there really isn't at this pint except get rid of adenoids to get rid of the source of the infections. So T& A surgery best rid of strep and sinus infection sources. He didn't want to over promise us and was conservative with how he told us his success rates etc he saw how many doctors promised us immediate cures and was hesitant with us as parents being promised miracles so he was professional and conservative but very 100% let's schedule the surgery ASAP and take them out there is no risk ( except the temp flaring or major discomfort after surgery but since he is PANDAS friendly he knows the proper channels to do the surgery) and had no hesitation and with all the history, blood work from Dr. T. Strep titers he didn't even need to really examine him he knows he has the infections so he is confident that by getting rid of the sources of infection at least we can start to get the infection out and know he can't get sick again and we can figure t out form there. Please say a prayer this is our last stop and last hope.xoxoxo