Jump to content
ACN Latitudes Forums

Recommended Posts

Hi guys,

Just a quick question as I find myself continuously fighting unnecessary objections from my parents despite a slight but significant improvement to the abx. Very stressful, it's like climbing the Great Wall of china! 

I've had a prior consultation with a prominent ENT who found large amounts of  thick green mucus occupying my sinus cavaties. Scans are scheduled with the possibility of surgery. 

Here's the thing, after following Dr K's advise and responding positively to the antibiotics, I'm seeking a private T&A. I've noticed indeed that my tonsils are inflamed which only adds weight to the diagnosis.

My question is would T&A be viable 6-7 weeks before attempting to remove any inflammatory fluid occupying my sinuses?

My parents are now arguing that T&A won't be allowed where I have an ongoing infection in the sinuses! Unfortunately, due to NHS guidelines T&A surgery can only be sought privately (so costs ££££)

They have on occasion begrudgingly accepted the idea of resourcing treatment in the past, but I still feel there not truly onboard with pandas in the clinical sense. 

I know you guys are the experts, you've been there, have experience, and gone through the experience!

I was just hoping if someone could confirm that T&A first would be OK, as I'm desperate to get the treatment now instead of fumbling around talking to people that aren't truly onboard with me experience.

Thanks guys you've kept me fighting on through a difficult few months! God bless.

Link to post
Share on other sites

The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A.

The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it.  

My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT.  The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery .  New doc felt he could tell just by looking at him that he was stuffed.  However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy).  I was surprised that he was surprised that this wasn't handled earlier.

Edited by jan251
Link to post
Share on other sites

Hi Jan,

Thanks for replying. It's just due to the fragmentary nature of the healthcare system over here, my only option to receive T&A is to go private. My ENT has told me that tonsillectomy won't be possible under her care in the NHS, but I may still be due for sinus surgery at a later date. I'm still under the indirect care of Dr K, who insists on T&A - and to be fair my tonsils are quite inflamed and sore. If I am to receive possible IVIG at a later date then I've been told that T&A is absolutely necessary with regards to pandas.

Unfortunately, even though PANDAS hasn't been disputed by my healthcare professionals, only Dr K is recommending treatment directly.

Edited by Hitman3161
Link to post
Share on other sites

Can you do the whole thing privately, do the T&A and sinus surgery in one operation?  That would seem to make the most sense, at least with what little I know.  I suppose you might have to pay privately for the whole thing and I have no clue how the system works there, but it may be worth asking the ENT if she could bill separately for the T&A and then bill NHS for the sinus part.

Obviously you'd need a sinus CT first, and I have no idea how long that takes to schedule in the UK (here, it can be scheduled very quickly; I think we did ours the next day).

Link to post
Share on other sites

I have no direct experience of sinus scans and surgery, and can't contribute to the medical question.  But I really do think you are on the right track by pursuing both of these, so I wanted to encourage you along that difficult "great wall of China" path.

Link to post
Share on other sites

Hi bob, Jan

Once again the encouragement is always appreciated, yes It does feel like "climbing the wall of China" at times such an obstacle, simply due to the inordinate lack of recognition within the medical community. I hope I'm on the right track too bob, cheers again.

 

Jan the NHS is a Public Health Service that is funded by tax payers, treatment is usually free on the NHS, but operating guidelines and lack of awareness severely hamper the treatment process. In no way I'm I disrespecting the NHS (the doctors are the same private regardless), there are some truly 'world class' physicians over here but again it's finding a doctor who will treat pandas. You guys are far more advanced than the UK, both in research and treatment modalities but after a few to many dark months the tide is slowly turning and things are looking up! I just can't wait to update when the surgery has been carried out, so far so good but I'm still preying I respond. I do trust in Dr K though so It should turn out well - it's always good to have a Dr with real prestige behind you.

Link to post
Share on other sites

In Canada, we are not advanced as far as PANDAS (and especially lyme) is concerned.  Here, it's as if the medical associations and health care advice to the government are controlled by crusty old opinionated men that refuse to look at anything new, like the kind of people that interrupt and cut your excellent point short before you can even get half-way through it.

My impression is that in the U.S., there is 1) simply more people, therefore correspondingly more doctors that can treat, and 2) a private model that is more likely to advance with excursions from the mainstream, as long as someone is paying (if the insurance companies aren't).

I think you will do well with Dr. K, if you can get there.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...