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CRD1995

Update on tonsillectomy

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I wish I could say that all of my symptoms were resolved after the tonsillectomy but that would be a lie. To be honest, I actually seem worse. :/ This is day 9 of post op and so far I'm discouraged! My anxiety and OCD are at an all time high but I try to attribute that to the fact that I'm in a lot of physical pain at the moment. For those of you who didn't read my first post, I just recently had my tonsils removed due to reoccurring strep. I was on Penicillin and then Augmentin before the surgery. I asked for antibiotics post op but the ENT wouldn't prescribe them because he said it looked as if the antibiotics had controlled the infection. There was no point in arguing because he was very stubborn. I honestly think I wouldn't be so anxious/wound up if I could have gotten the antibiotics for post op. However, I am trying not to get too discouraged because I think just about anyone would be mentally exhausted after such a painful procedure.

On the bright side I have started seeing a cognitive behavioral therapist for exposure and response therapy. She is incredibly supportive of PANDAS/PANS and she said that although I am a relatively severe case I will probably be able to completely go off of medication in roughly 4 to 6 months. She also said she will try to set me up for some strep titers. If anyone is looking for a therapist in the Nashville TN area I would love to recommend her. Just send me a message. Overall, I haven't seen the improvement that I want. I realize however that some people get worse immediately after the tonsillectomy only to feel better later. I will continue to keep everyone updated on my progress. If anyone's child is about to get their tonsils removed I can definitely offer some tips. There are a lot of things that I wish I had known before surgery.

 

Everything is still pretty bad right now but I'm hoping for some improvement soon!

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Did they use a steroid during surgery? I hear it is pretty standard these days, but you did not mention it. I think that antibiotics is very necessary in your case because of the Pandas dx. Remember, the abx works for the infection part, but it also in an anti-inflammatory. Without a steroid and abx, it makes sense that you would be doing worse or no change right now. Your body just went through surgery, so your immune system is turned on. That is what the steroid/abx could control...On the bright side, when your body is done healing, you may find the relief you are hoping for.

 

Best of luck

q

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I am no expert in tonsil removal, but sheer common sense tells me bacteria is released from them after removal-

right? All that fumbling around? Seriously.

Is there another Dr. who may be able to prescribe you some?

Maybe even a walk in clinic- say you've had an ongoing fever since removal. They'd most likely give you at least an Azithromycin Z-pack.

 

I think you are quite a lovely young lady, and your future very bright.

Hang in there!

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I would try to find someone to put you on antibiotics asap. The "recommendations" for antibiotics pre-surgery, during surgery, and after tonsillectomy changed a few years ago and now a lot of ENTs are not giving them which is a bad idea. Antibiotics prior to surgery is not enough in a person with chronic strep. Antibiotics should be given IV during surgery and oral antibiotics post surgery to deal with the strep that is released during surgery. If the strep is intracellular, the penicillin and augmentin can't always reach the strep. Azithromycin(zithromax) would be a good choice. If your PCP won't prescribe them either, try a walk-in clinic with the symptoms of fever, sore throat and request zithromax. Best of luck to you. Also, to try to lessen the symptoms right now, have you tried ibuprofen every 6 hours for a few days?

Colleen

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CRD1995-

I am so glad you had it done! and 9 days are not many- lots of time for improvement.

I just wanted to offer to you- that yes, everyone is telling you to get abx (like you can just produce a doc to prescribe them for you!) if you can great, but if not- please do not stress yourself out over it- that is not helpful to your recovery (either from the surgery or from PANS)

 

The important thing is that they are out and you have a great therapist. Do you know if the ENT cultured them? that would be interesting-- but again- just glad they are out!

Best wishes and do the best you can- that is all anyone can do any way.

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Thanks everyone! I've just been really busy these last few days with doctors appointments and everything. I didn't get an antibiotic or steroid during the surgery. The surgeon was pretty difficult to deal with. I don't think anything I could have told him would have gotten me antibiotics. The tonsils were not cultured. I asked him to culture them but he wouldn't do it. Kind of a standoffish person. However, on the bright side of things my therapist set me up for a strep titer. Hopefully I will get that somewhere around June 6th. If my titer is elevated she said that many of her patients have had success with ivdd and she can give me a good doctor to go to. The treatment is $1,200 but I say if it works, bring it on. If my titers are not elevated she said she will assume that I grew out of the PANS/PANDAS but am still experiencing trauma from it. I'm also starting EMDR and Exposure and Response soon. This should be interesting. As of today I was put on Lexapro with a target dose of 10mg. The plan is to keep me medicated for 6 months while I complete therapy. I'm kind of scared to go off of the Prozac but it's not working so I don't see why I should be.

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Many docs advise not to chase titers...timeline on when test is done will give varied results. Plus, some people dont create high titers like my son whom had strep for 6 weeks...blood titers were in normal range..hence this nebulous disorder. Having no recent strep infection does not mean you have outgrown pandas...having zero symptoms for years means you have...best of luck with ivig...it helped my son a lot

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CRD1995,

My Son will be getting his tonsils out in late September. I would really like to hear about what you would have done differently, or what you did that worked well.

 

Thanks!

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