Re: wow - i'm so glad i found you guys!!!!!

[Guest guest]

Shelli

If you are willing to go to Boston, or can't find a dr closer to you, I can hook you up with a great doctor at Brigham & Women's. Just did my desens in Sept...after suffering for 13 yrs and 6 surgeries, etc. I know EXACTLY how you feel.

Good luck

Stacey

sutela@...

wow - i'm so glad i found you guys!!!!!

i just stumbled into this site last nite and i can't stop reading. like all of you i've been suffering for years and have been feeling really hopeless lately. I HATE THESE POLYPS!!!!from what you all describe, i am pretty sure i must have this samter thing. my dr's told me not to take any aspirin or nsaids, but never mentioned that desens might slow these polyps down. i know they are trying to help but i feel so angry that they are specialist's and they don't know about this! i should have tried this densensitisation after my 2 previous surgeries and maybe i wouldn't feel like there are 4 huge grapes stuffed up my nose again! sorry to be a whiner, i'm just at my wits end and venting. i'm sorry you all are sick too, but i am so happy to meet others in the same boat, and especially to hear that there is hope of feeling better! i swear, if one more well meaning stranger says, "wow, you sound like you have a terrible cold today", i will burst into tears on the spot.ok, moving on.1) my polyps are huge again, so i have to get another surgery. i feel confident with my ENT surgeon.2) i need to find a dr to help with the desens after surgery. i live near raleigh nc, but i have blue cross insurance, so i can go anywhere, who is the BEST for this? i don't mind traveling, i just want the smartest doc.thanks so much for reading my crazy ramble and i'm so glad to meet you guys!shelli

[Guest guest]

Desens is not complicated -- and is kind of boring except for the hard part. You need someone with experience so that they know how to prep you before and how to handle the part when you react. But it's not technical. It's best to do it about two weeks post surgery, so your polyps don't have much chance to grow back. I did it through a local Denver allergist -- he actually wasn't present, but a woman who works in his office supervised me. Standard dosage for desens is 1350 mg (in America). This is the most effective -- if you can tolerate it, which many of us can't. I started on that, but shortly afterwards lowered the dose to 650 mg (325 2x/day). When you talk to prospective docs find out how many people they have desensitized and find out their protocol -- what do they put you on before, what are their expectations after, can they schedule two weeks post surgery, etc. It's generally a two day process. If you have questions or doubts you can run it by folks here.Good luck, and good desens.JoanOn Nov 13, 2010, at 2:31 PM, shelli0001 wrote:

i just stumbled into this site last nite and i can't stop reading. like all of you i've been suffering for years and have been feeling really hopeless lately. I HATE THESE POLYPS!!!!

from what you all describe, i am pretty sure i must have this samter thing. my dr's told me not to take any aspirin or nsaids, but never mentioned that desens might slow these polyps down. i know they are trying to help but i feel so angry that they are specialist's and they don't know about this! i should have tried this densensitisation after my 2 previous surgeries and maybe i wouldn't feel like there are 4 huge grapes stuffed up my nose again! sorry to be a whiner, i'm just at my wits end and venting. i'm sorry you all are sick too, but i am so happy to meet others in the same boat, and especially to hear that there is hope of feeling better! i swear, if one more well meaning stranger says, "wow, you sound like you have a terrible cold today", i will burst into tears on the spot.

ok, moving on.

1) my polyps are huge again, so i have to get another surgery. i feel confident with my ENT surgeon.

2) i need to find a dr to help with the desens after surgery. i live near raleigh nc, but i have blue cross insurance, so i can go anywhere, who is the BEST for this? i don't mind traveling, i just want the smartest doc.

thanks so much for reading my crazy ramble and i'm so glad to meet you guys!

shelli