New News from Dr Licameli-POST SURGERY RESEARCH

[Guest guest]

Fran & Everyone,

I recieved the below email message from Licameli's research

assistant. Months ago I had inquired at Dr Licameli's office if he

had plans to follow up with the kids after T & A and REALLY find

out the long term outcome of surgery. I never got a response until

now and it looks like they might need some help from some people in

this group who have gone through with the T & A. For us this is VERY

exciting to see a doctor now tracking these kids, I'm so thrilled to

participate if we qualify.

Fran-Is it possible for Dr Licameli's research assistant to interface

with this group in any way? Please let me know how I should respond

to her. See below:

Hello ,

I am the research assistant for Dr. Greg Licameli at Children's

Hospital Boston Department of Otolaryngology. At his request, I am

sending you this message on his behalf.

As you are aware, Dr. Licameli has had great success in eliminating

symptoms in pediatric patients through tonsillectomy surgery.

We are very interested in pursuing a new, medically-validated

research study examining the effectiveness of tonsil removal on the

cessation of symptoms. This would differ from his prior study

in that the subject population would be larger and the outcomes would

be based on a lengthier follow-up period (even 5 years post-operation

in some cases). As you can imagine, this is exciting and innovative

research that could potentially help many patients find a long-

term cure when there previously was none.

You had mentioned in a message to Dr. Licameli that you were apart

of a support network of many individuals with . This group of

individuals would be a great asset to Dr. Licameli's research. Can

you provide any insight on how we may contact these individuals to

see if they would be interested in being involved in this research

(e.g. filling out surveys about symptoms, treatments, and outcomes)?

I hope to hear from you soon.

Thank you!

Guidi

Research Assistant

Department of Otolaryngology and Communication Enhancement

300 Longwood Ave LO 367

Boston, MA 02115

[Guest guest]

Hi , Fran and all,

 

I'd be happy to talk to .  My daughter is 5 and had her T & A on October

14th of this year.  So far, so good.  Although it's scary to write because I'm

afraid of jinxing myself (if there is such a thing) she's been free of any

symptoms since.  Dr. Bahadori did the procedure, here in Northern Virginia.

 

I'd be happy to fill out surveys, forms, etc. anything to help find a cure for

this.

 

Thanks!

Short

[Guest guest]

- that is great. I would more than willing to provide information.

Calder's surgery went great. It has only been three weeks but so far so

good. Dr. Bahadori was fantastic. He called several times after the

surgery to make sure Calder was recovering (probably because we live out of

the area). He wanted me to let him know at 6 months if the fevers had

stopped. I hope I have good news for him. Thanks again for the referral.

Alyssa

[Guest guest]

Hi ,

I think we, who have a diagnosis but have no treatment will really

benefit in particpating in this research. Please invite her to this

group or ask her if we can contact her directly. I dont like in

Boston, but I am willing to travel to meet an expert.

-Lydia

[Guest guest]

,

 

This is very exciting and has the potential to help so many.  I would love to

help if I can in any way.  I am a strong advocate for the T & A since we have had

success so far.

 

Happy Holidays,

Jackie mom to Landon 5 yrs. old fevering since an infant, fever free since T & A

on 9/8/08

[Guest guest]

Can someone please post the original message...I have been off board fro a week

and can not find original post........

[Guest guest]

,

I would be more than happy to participate in this research. Dr

Licamelli was my sons surgeon so its even better! I had wondered if he

was ever going to follow up at any point. Unfortunately, my son is one

that the T & A hasn't helped yet, but I'm still keeping my fingers crossed!

Thanks,

(mother of Austin 3yrs)

[Guest guest]

,

 

As several have commented, I'd be happy to share my information.  I had been in

contact with her prior to changing jobs - but have lost her email address, and

mine has changed.

 

We have made it past the 1 year mark post-T & A.  le's last fever was just

about 13 months ago.  She's only had two cold/viruses since then and has been

very healthy and happy.

 

Our ENT is Dr. Thomsen here in Atlanta and our Pediatrician is Dr. Roy

Benaroch.  Both have had several cases of and may also be willing to share

information with Dr. Licameli.

Please feel free to pass on my email information.

 

Thank you,

 

Ginger Hackett

Alpharetta, GA

le - 3 1/2 years old, fever free since T & A on 12/10/07.

 

[Guest guest]

We would totally be interested in participating in the research. I

asked my doctor about doing that. Dr. Boyce works at the Mayo

Clinic in Infectious Diseases and only has approximately 5 patients

with . He said he would have to parter up with other places,

but he was willing to talk about doing some research. I think it's

thrilling someone is willing to look at this whether or not we can

participate in this or not!

[Guest guest]

, 

 

My son had his tonsils out I think almost 3 years now and and still doing

great.  Let me know if I can help with the research.   Very much for the T & A, it

did wonders for us. Cade will be 6 years old this Dec. 30.

Leanne

Coldwell Banker Residential

1585 Hwy 77 N. Ste. A

Waxahachie, TX 75165

214-914-6851

[Guest guest]

Hello all!

I have been a member of the group for a long time--since the

beginning, I think, but a lurker for most of the past seven years. My

son suffered terribly with from 11 months to age 5 when he had

his tonsils/adenoids removed. As many of you have found, it was a

pretty miraculous " cure " for him....for awhile. He would have

symptoms that we wondered if they were -related, but no full-

blown episodes. He still never had any sort of normal virus, however.

The only virus-type illnesses that he has ever had are Mono and

Chicken Pox. Then, about 18 months ago, he had a fever episode.

Since then, he has had five episodes with increasing severity and

frequency. The last one was extremely painful for him. It has been 7

years since his surgery. He is now 12 years old. I will probably

take him back to see his Infectious Disease doctor soon just to see if

he has any new ideas for treatment options since it has been quite a

while since he has seen him.

We would definitely be interested in participating in the research

study.

Carol Reynolds

Greenfield, IN