Tonsillectomy?

[linds2040]

Hi, I'm not a parent or caregiver - I have psoriasis, but I saw some talk about tonsillectomies. I'm 21 years old - I had psoriasis really badly when I was about 7, but after a year and a half of intense phototherapy, it was gone until I recently had a bad case of strep throat and now its all back again. I'm in grad school in the middle of nowhere and have nowhere to have phototherapy within about 60 miles of where I am. I've been going to the tanning bed which doesn't seem to be producing results, but we'll see.
Anyways, I hadn't gotten strep throat in about 12 years, so it's not like I have recurring cases. However, I will be an elementary school teacher in a year, and we all know how the illnesses go around there. We know what happens when I get strep throat, and the doctor has mentioned a tonsillectomy as an interventive measure. My question is how do you ever convince your insurance company that this is something you absolutely need? Also, any advice/input would be greatly appreciated. A lot of my friends just don't get psoriasis and don't think its that big of a deal, but I'm struggling with it pretty bad.

Thanks!

[chaimFL]

Getting insurance to approve the procedure depends on how strict your insurance company is. Some approve standard procedures that are not done for cosmetic reasons without care, but others want justification.

Justification for a tonsillectomy rests solely on the wording that your doctor uses with the insurance company. Many doctors know what to do and how to do it, but you can always discuss the procedure and potential insurance problems with your doctor to see if he/she has such knowledge. You can also call your insurance company and ask them outright, they will give you an answer and they won't "blacklist" you for asking.

My feeling is that since a tonsillectomy is not done for cosmetic reasons for any reason that I can think of insurance will have no problem approving it.

[Carlismommy]

I had my tonsils removed when I was 21 and have not had a sore throat since. It hurt but it really wasn't as bad as people say- just drink A LOT!! My daughter also has severe psoriasis from strep throat and is getting her tonsils out in March. Our derm has reccomended getting them out as the chances of getting strep throat are less if the tonsils are not there. However, my daughters are very large and seems to get strep all the time. She is 9 and we hope and pray it helps her psoriasis and from getting strep...If your derm and/or ENT Dr. reccomend getting them out, I bet your insurance will pay for it...Keep us posted on what you decide to do and I will let you know how my daughter does after getting hers out.....And welcome to the boards. I am new to it too and so far have gotten many suggestions and support- Take care.....Jami

[MikeK]

Hi Linds2040,

Welcome to the Board! Nice to meet you. Congrats on your decision to become a teacher. Good for you!

You're wise to be concerned about strep throat. Strep is a known trigger for psoriasis. To add insult to injury more then a few people have posted here that either their psoriasis or their child's psoriasis was triggered by strep. To further add insult to injury, many of these same people have reported that a psoriasis outbreak was often the only sign that there was a problem because they were asymptomatic for strep! To further complicate things, the psoriasis won't respond to treatment until the strep is treated. Here's the links to some previous discussions on the subject: http://www.psoriasis.org/forum/showt...nce+strep+test and http://www.psoriasis.org/forum/showt...entation+strep.

Since you also asked about getting a tonsillectomy, here's a link to a recent discussion on the subect: http://www.psoriasis.org/forum/showthread.php?t=13162. (It includes a link to yet another discussion about psoriasis and tonsillectomies.)

I hope this helps.

Good luck. Keep us posted and please dont' be a stranger.

Mike

[linds2040]

Thanks everyone! I'm glad I found this board - I am back to the dr. next week...I'll let you know what happens!

[Bubbbles2002]

I am almost 21 and I have had P since I was five so I understand what u are going through. I got my tonsils out when I was 17, it sure helped my throat! However, I always got checked for strep and never had it so I do not know if it helped my P or not, but I know it has helped some



Ashley

[Casey Paige]

Hey my name is casey and I am a 22yr old female.

I once suffered from guttate psoriasis and I know all too well the different emotions felt by the person suffering from this condition. I want to reach out and share my story with people and if I help just one person that would be fantastic...

I was 15 when I suffered from first step throat and within two weeks I had developed a red rash across my stomach, multiple dots, that seemed to be spreading at such an alarming rate than within a couple of days it had spread to almost 80% of my body!! I kept enduring strep throats and tonsilitus one ontop of another so my psoriasis would only flare up much worse with every episode. Little did I know that guttate would be apart of my life for the next 5 years.

Over the years I visited, GP's, psoriasis specialists, clinics and tried endless lotions and potions. Everything from special formulated cream imported from overseas, a strict acid free diet which I stuck to for almost a year, dead sea salts, rubbed myself in maluka honey, heat beds and off course the sun! Some of these things did give me temporary relief but as soon as the strep throat returned so too did my red bumps...at this stage I was so desperate and I felt myself slipping into a severe depression. I felt alone and very scared about the future.

I lost my job, refused to see my friends, hibenated in the summer months to avoid people stares and found that my life was basically sliping through my fingers!! I needed an answer and one fast.. I started searching the net for any new treatment seeing the professionals were not helping my quest.. I started looking on forums for solutions and came across a story about a girl my age who was in the same situation. She had a tonsilectomy and was completely clear of her psoriasis and had been for years. I thendid my own search of the net to see what else I could find on the procedure and to my suprise other people had the same results amazing results.

I had been visitng my GP for years about my tonsilitus and he never once recommended me see any ENT(ear nose and throat) specialist which should have been considered years earlier.

I spoke with my mother who was just as desperate as I was for a breakthrough, she would have done anything to clear me and to make me feel better!! We were so excited, we contacted the surgery and organised an urgent appointment!!

The morning came and we met with the specialist, we told him my history and explained our hopes for a answer to my psoriasis. Suprisingly he had heard of a few people who had their tonsils removed which therefore cleared there psoriasis. He told me that my tonsils were to be removed and that they were the worst he had seen in his 30 year profession also expressing his disappointment that they weren't removed earlier. I was also told that he couldn't promise me anything which is understandable but I couldn't control my emotions and broke down in his room. He scheduled the procedure for that coming weekend. He also gave me a week's worth of antibiodics to stop me developing an infection leading up to the surgery!

The morning came and I was taken to the hospital very anxious but very excited at the same time! It was a 45 minute procedure and everything went well. I was even allowed to go home the next day. The Dr also told me that I can no longer get a strep throat or tonsilitus again with no tonsils...so therefore no guttate...

My operation was in 2004 so I have been clear for almost 3 years and have never looked back!! I can now enjoy going to the beach and living a normal life again...

Please consider a tonsilectomy even if the doctor says that it's not necessary keep trying until you find one who will do the procedure. Book into seeing an and ENT specialist..I am living proof that this really has changed my life...I am writing this post to hopefully reach out to the people who are suffering just like I did. It's worth a try, you have nothing to loose and everything to gain!!

Please write to me if you have any questions I am more than happy to answer any concerns you may have

[Barnacle Itch]

I used to get tonsilitus all the time when I was younger. Never had any psoriasis tho. I had strep a few times too but never any outbreaks from that. Now that I have a daughter and my new wife has a son and daughter they occasionally have strep. Mostly her son. I have only once in a while had a minor feeling of having a cold and a sore throat after they did. Could I have it all the time but not really know and that is why I haven't gotten any better in the 3 years that I have been suffering thru this? I have been with my wife for 3 1/2 years and have been growing 'lizard' skin for maybe 3 of them. Her son has strep quite often too. Could he be getting it from me or maybe I got it from him and its causing the psoriasis?

[MikeK]

Hi Barnacle Itch,

You observed:

I used to get tonsilitus all the time when I was younger. Never had any psoriasis tho. I had strep a few times too but never any outbreaks from that. Now that I have a daughter and my new wife has a son and daughter they occasionally have strep. Mostly her son.

You also observed:

I have only once in a while had a minor feeling of having a cold and a sore throat after they did.

You asked

Could I have it all the time but not really know and that is why I haven't gotten any better in the 3 years that I have been suffering thru this? I have been with my wife for 3 1/2 years and have been growing 'lizard' skin for maybe 3 of them. Her son has strep quite often too. Could he be getting it from me or maybe I got it from him and its causing the psoriasis?

Unfortunately, yes. More then a few people have posted here that either their psoriasis or their child's psoriasis was triggered by some sort of infection. (Strep is the usual cultprit but just about any infection can trigger a psoriasis outbreak.) To add insult to injury, many of these same people have also posted that the psoriasis outbreak is often the only sign that they have strep because the they were asymptomatic for the infection. (I.E., No sore throat or fever in the case of strep.) To further complicate things, many of these same people have also posted that their psoriasis won't respond to treatment until the underlying infection is taken care of. Based on their experience (and your own observations) you might want to seriously consider getting tested for strep. Insist on a culture, because the so-called quick test is often unreliable. Some people have to get a blood test, called an ASO blood test, to confirm that they have strep. Here's the links to some previous discussions about psoriasis and strep:

Here's the links to some previous discussions of psoriasis and infections:

http://www.psoriasis.org/forum/showt...nce+strep+test;

http://www.psoriasis.org/forum/showt...entation+strep;

http://www.psoriasis.org/forum/showt...&highlight=uti;

http://www.psoriasis.org/forum/showthread.php?t=22508; and

http://www.psoriasis.org/forum/showt...&highlight=aso. (The ASO blood test is discussed in this thread.)

Finally, here's a link to the NPF's discussion of psoriasis triggers: http://www.psoriasis.org/about/living/triggers/.

I hope this helps.

Mike

[Barnacle Itch]

Thanks Mike I'll check them out!!

[starrn]

My 24 yold daughter had her tonsils removed yesterday. She has suffered from severe psoriasis since a strep infection 8 years ago...Unless she is in the tanning bed constantly she has lesions on her elbows, hairline and scattered all over her body. Her psoriasis varies in severity but aside from about a 3 month period of constant tanning she has had some lesions for the entire 8 year period. About 3 weeks ago she had strep throat again and last week she began the worst breakout she has ever had. Her entire torso, back, chest, scalp, face and arms are covered with psoriasis, it is awful. She was first diagnosed by a dermatologist about 7 years ago, after visiting several doctors without answers...Dr Roytman, took one look at her and immediately turned his textbook to a picture of guttate psoriasis. He knew what it was but explained that as severe as hers was that it would be a challange to treat, he was right...Like I said before tanning has been the only thing that worked. A year ago she took her younger sister to she Dr Roytman for a case of acne and he told her she should consider a tonsilectomy. After consulting with a surgeon who had heard that it helped but offered little reassurance that it was the right thing to do, she scheduled surgery...What a way to spend New Years Eve!!! We are hoping for the best.. I also have a son and a grandson who suffer from psoriasis. I promise to follow through and post how she does, hopefully I willl be telling everyone how much the procedure helped! Hopeful!!!

[stametst]

Hi, I'm not a parent or caregiver - I have psoriasis, but I saw some talk about tonsillectomies. I'm 21 years old - I had psoriasis really badly when I was about 7, but after a year and a half of intense phototherapy, it was gone until I recently had a bad case of strep throat and now its all back again. I'm in grad school in the middle of nowhere and have nowhere to have phototherapy within about 60 miles of where I am. I've been going to the tanning bed which doesn't seem to be producing results, but we'll see.
Anyways, I hadn't gotten strep throat in about 12 years, so it's not like I have recurring cases. However, I will be an elementary school teacher in a year, and we all know how the illnesses go around there. We know what happens when I get strep throat, and the doctor has mentioned a tonsillectomy as an interventive measure. My question is how do you ever convince your insurance company that this is something you absolutely need? Also, any advice/input would be greatly appreciated. A lot of my friends just don't get psoriasis and don't think its that big of a deal, but I'm struggling with it pretty bad.

Thanks!

I just wanted to say hello and welcome you to the board.

That is an interesting question. On February 23, 2009 will be Capitol Hill Day for the National Psoriasis Foundation. If you can come to Washington, DC and be hear on that day I would highly recommend it. This will be dealing with insurance companies, disabilities, medical treatment and many other top issues.

In order for change there will need to be a group of us to make this change possible. Hopefully, with the new Obama Administration they will make changes for the better. If you are unable to come I would recommend that you make an appointment with your legislative assistant of your state, take pictures of your psoriasis and submitted to your Senator.

I found your email quite fascinating and I wanted to mention when I was younger I used to wind up with strep throat. It wasn't until after my tonsills were removed that I did not have strep throat. I think sometimes I still get it but I did not think it had anything to do with psoriasis.

Does it really and is strep throat another immune disorder? I was just wondering.

[starrn]

This is an update about my 24 year old daughter’s problems with psoriasis. Like my previous post said she had a tonsillectomy December 31, 2008. From what I understand there are several different types of psoriases’ but the type my daughter has guttate psoriasis, is approx 2% of all psoriasis and is directly related to a strep infection. If guttate continues over time it can turn into plaque psoriasis. Of course all of this information has come from her dermatologist. I have to say at this point we are very disappointed. Her surgery was very difficult and she ended up back in the hospital 2 days post op for an additional 2 day hospital stay. She had complications due to the flu and an overall miserable recovery which is still going on. She is now almost a month out of surgery. Aside from the surgical complications, her psoriasis seemed to respond in the first week. Later we discovered that was likely due to the mega doses of steroids they gave her when she was readmitted to the hospital. Within two weeks she looked worse than ever. She reluctantly started tanning again since she was completely covered head to toe! She has been tanning for two weeks now and it is starting to look better. We really hope she did not go through a dangerous surgery and a horrible recovery just to continue to have to tan constantly. Like I said before she did have a horrible strep infection just a few weeks before surgery which caused the worst breakout ever and we are hoping that her current condition is just left over from that out break. She has never had luck with any topical creams and she has opted against other dangerous medication…at this point we are just waiting to see if there is improvement. I will continue to update with progress or lack there of… Does anyone out there have any idea how long this surgery takes to work if it is going to??? I am trying to keep her spirits up but, I am beginning to wonder myself and her doctor's say they really don't know!!!
Thanks for listening,
Concerned Mom

[ericw10]

This is an update about my 24 year old daughter’s problems with psoriasis. Like my previous post said she had a tonsillectomy December 31, 2008. From what I understand there are several different types of psoriases’ but the type my daughter has guttate psoriasis, is approx 2% of all psoriasis and is directly related to a strep infection. If guttate continues over time it can turn into plaque psoriasis. Of course all of this information has come from her dermatologist. I have to say at this point we are very disappointed. Her surgery was very difficult and she ended up back in the hospital 2 days post op for an additional 2 day hospital stay. She had complications due to the flu and an overall miserable recovery which is still going on. She is now almost a month out of surgery. Aside from the surgical complications, her psoriasis seemed to respond in the first week. Later we discovered that was likely due to the mega doses of steroids they gave her when she was readmitted to the hospital. Within two weeks she looked worse than ever. She reluctantly started tanning again since she was completely covered head to toe! She has been tanning for two weeks now and it is starting to look better. We really hope she did not go through a dangerous surgery and a horrible recovery just to continue to have to tan constantly. Like I said before she did have a horrible strep infection just a few weeks before surgery which caused the worst breakout ever and we are hoping that her current condition is just left over from that out break. She has never had luck with any topical creams and she has opted against other dangerous medication…at this point we are just waiting to see if there is improvement. I will continue to update with progress or lack there of… Does anyone out there have any idea how long this surgery takes to work if it is going to??? I am trying to keep her spirits up but, I am beginning to wonder myself and her doctor's say they really don't know!!!
Thanks for listening,
Concerned Mom

Wow, sorry to hear about such a difficult time for you and your daughter. I consider myself fortunate that my tonsillectomy at age 35 was complication free. I did not have them out to try and remedy my psoriasis, but due to the fact that they were enlarged enough to contribute to sleep apnea and were just chronically infected and cryptic for years. My surgeon also said they should have been removed many years earlier.

I did not see any change in my psoriasis after removal though. But I had the condition for 12 years before removal, so the bacteria and any immune response/adaptation to it was well established by then. After having this for 17 years, I can safely say that stress, either mental or physical (sickness, surgery etc) is the #1 culprit for worsening my condition.

Therefore it is not surprising that your daughter flared badly after surgery and even less surprising that she flared after discontinuing the steriods due to rebound effect. All I can suggest is that it will take time to see the results, but while waiting, do all she can to rest, heal, and detox. Plenty of water, fresh vegatables, fruit, lean protein, omega-3's etc. The body needs time to readjust to the lower bacteria/endotoxin levels in the blood. But it will not happen quickly.

Even with profoundly potent immune suppressors like the TNF targeted biologics, it can take months for lesions to fade. And some people like myself never clear completely on them. Millions of years of evolution have created many inflammatory pathways. TNF is just one. But she has taken a good first step at getting those infectious bacterial colonies and source of inflammation out of her system. Hopefully over time, the body will realize that and call a cease fire. If not, she should seriously consider getting aggressive treatment (biologics w/ or without MTX etc) even with the risks as her case sounds quite severe and that in itself has significant risk. Chronic inflammation is just bad in every way. The fire has to be put out. Best of luck to you both.

[Stockmoe]

Hello,
I, too, have Guttate Psoriasis and one of the most prevelant triggers is bacterial infections such as Streptococcus. Recently after being sick for several months I visited with my dermatologist and he suggested that we run a throat culture. It came back negative for Strep, however when we ran a Titer it was off the charts for the antibodies to Strep. In a very random discussion we talked about how he had seen some improvement for people with this disease by taking out their Tonsils. This is because if bacterial infections are one of the most common trigger for Guttate Psoriasis, than taking out a part of the body that harbors the bacteria makes a lot of sense. I have surgery soon so I will let you know how it goes!

L. Stockmoe

[Stockmoe]

Hey my name is casey and I am a 22yr old female.

I once suffered from guttate psoriasis and I know all too well the different emotions felt by the person suffering from this condition. I want to reach out and share my story with people and if I help just one person that would be fantastic...

I was 15 when I suffered from first step throat and within two weeks I had developed a red rash across my stomach, multiple dots, that seemed to be spreading at such an alarming rate than within a couple of days it had spread to almost 80% of my body!! I kept enduring strep throats and tonsilitus one ontop of another so my psoriasis would only flare up much worse with every episode. Little did I know that guttate would be apart of my life for the next 5 years.

Over the years I visited, GP's, psoriasis specialists, clinics and tried endless lotions and potions. Everything from special formulated cream imported from overseas, a strict acid free diet which I stuck to for almost a year, dead sea salts, rubbed myself in maluka honey, heat beds and off course the sun! Some of these things did give me temporary relief but as soon as the strep throat returned so too did my red bumps...at this stage I was so desperate and I felt myself slipping into a severe depression. I felt alone and very scared about the future.

I lost my job, refused to see my friends, hibenated in the summer months to avoid people stares and found that my life was basically sliping through my fingers!! I needed an answer and one fast.. I started searching the net for any new treatment seeing the professionals were not helping my quest.. I started looking on forums for solutions and came across a story about a girl my age who was in the same situation. She had a tonsilectomy and was completely clear of her psoriasis and had been for years. I thendid my own search of the net to see what else I could find on the procedure and to my suprise other people had the same results amazing results.

I had been visitng my GP for years about my tonsilitus and he never once recommended me see any ENT(ear nose and throat) specialist which should have been considered years earlier.

I spoke with my mother who was just as desperate as I was for a breakthrough, she would have done anything to clear me and to make me feel better!! We were so excited, we contacted the surgery and organised an urgent appointment!!

The morning came and we met with the specialist, we told him my history and explained our hopes for a answer to my psoriasis. Suprisingly he had heard of a few people who had their tonsils removed which therefore cleared there psoriasis. He told me that my tonsils were to be removed and that they were the worst he had seen in his 30 year profession also expressing his disappointment that they weren't removed earlier. I was also told that he couldn't promise me anything which is understandable but I couldn't control my emotions and broke down in his room. He scheduled the procedure for that coming weekend. He also gave me a week's worth of antibiodics to stop me developing an infection leading up to the surgery!

The morning came and I was taken to the hospital very anxious but very excited at the same time! It was a 45 minute procedure and everything went well. I was even allowed to go home the next day. The Dr also told me that I can no longer get a strep throat or tonsilitus again with no tonsils...so therefore no guttate...

My operation was in 2004 so I have been clear for almost 3 years and have never looked back!! I can now enjoy going to the beach and living a normal life again...

Please consider a tonsilectomy even if the doctor says that it's not necessary keep trying until you find one who will do the procedure. Book into seeing an and ENT specialist..I am living proof that this really has changed my life...I am writing this post to hopefully reach out to the people who are suffering just like I did. It's worth a try, you have nothing to loose and everything to gain!!

Please write to me if you have any questions I am more than happy to answer any concerns you may have

--- All to familiar, the first time I ever broke out I got the rash instead of psoriasis and then several weeks later I was engulfed. I know its not healthy but I used to lay out til I was sunburned and it got rid of it for some reason. --- L. Stockmoe

[Stockmoe]

Hello,
I, too, have Guttate Psoriasis and one of the most prevelant triggers is bacterial infections such as Streptococcus. Recently after being sick for several months I visited with my dermatologist and he suggested that we run a throat culture. It came back negative for Strep, however when we ran a Titer it was off the charts for the antibodies to Strep. In a very random discussion we talked about how he had seen some improvement for people with this disease by taking out their Tonsils. This is because if bacterial infections are one of the most common trigger for Guttate Psoriasis, than taking out a part of the body that harbors the bacteria makes a lot of sense. I have surgery soon so I will let you know how it goes!

L. Stockmoe

The surgery went well, however there were complications afterwards mostly with pain and getting something that would help take the edge off. Very painful procedure. So far it is working, I have had bronchittus and my skin symptoms did not seem to kick up, and I was able to heal from it much faster. This may have only eliminated the issues with bacterial infections but that's approx. 30% reduction in reactions should it continue to work!