POZ Community Forums
Main Forums => Living With HIV => Topic started by: odyssey on January 24, 2011, 07:58:18 pm
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I'm scheduled to have my tonsils taken out on March 11th due to chronic tonsillitis and hypertrophy. My ID doc is on board with them coming out, but today at my regular visit with him, I asked what effect having them out would have on my immune system. He was honest with me and said he really didn't know. He said he was curious to see how having these stupid things that are constantly infected and inflamed removed will affect my CD4 count and such.
So... my question is... has anyone here had their tonsils out post-HIV? Or do any of you know about the effects of having the tonsils removed on a person with HIV? Any resources and info would be appreciated!
odyssey
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My ID actually thought I'd had mine out (I haven't) and on a second glance he'd said I've had a massive infection in them before. Which would make sense, because I used to have chronic problems with them.
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I recently asked this question about tonsils, the spleen, and HIV in another thread. But, now I can't remember which. I'll have to look for it. I'm getting ready to visit the doc about mine. I began January with losing my voice and having this spot on one of my tonsils. That lasted for a week, went away, and then came back a little--not as bad as before. Since then, that tonsil seems like there is something going on with it. I only have soreness when I swallow food or drink. It always feels like something is stuck on my tonsil--like behind the tonsil where you can't see.
So, after almost a month with it, I figured I should have it checked out. I'm sure it is nothing, but it has made me think about the tonsils and HIV. I'll be curious to hear what others say. Just to point out--I'm not comparing my issue with yours. I'm sure mine is nothing out of the ordinary. You, obviously, have had real issues with yours. The last time I had a similar issue was probably this time last year, so I'm sure mine is just one of those things that happen now and then. When I had the problem before, I noticed this white stuff squeezing out from around my tonsils when I looked at them in the mirror and cleared my throat. At that time, I was told it was no big deal and the tonsils often shed cells or something like that. I can't remember the medical term. This issue has just made me curious about them and the role they play with HIV.
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Not to alarm you Ted but when I was REALLY sick I was having issues swallowing, it hurt like a mother fucker. I had chalked it up to thrush, but who knows.
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Not to alarm you Ted but when I was REALLY sick I was having issues swallowing, it hurt like a mother fucker. I had chalked it up to thrush, but who knows.
This is why I thought I should have it checked out just to be on the safe side. I didn't want to run off to the doc at first as I'm trying to not freak out about every little thing. Plus, I haven't had a fever with this. So, I thought after a month, it wouldn't be freaking out to have it checked out.
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I recently asked this question about tonsils, the spleen, and HIV in another thread. But, now I can't remember which. I'll have to look for it. I'm getting ready to visit the doc about mine. I began January with losing my voice and having this spot on one of my tonsils. That lasted for a week, went away, and then came back a little--not as bad as before. Since then, that tonsil seems like there is something going on with it. I only have soreness when I swallow food or drink. It always feels like something is stuck on my tonsil--like behind the tonsil where you can't see.
So, after almost a month with it, I figured I should have it checked out. I'm sure it is nothing, but it has made me think about the tonsils and HIV. I'll be curious to hear what others say. Just to point out--I'm not comparing my issue with yours. I'm sure mine is nothing out of the ordinary. You, obviously, have had real issues with yours. The last time I had a similar issue was probably this time last year, so I'm sure mine is just one of those things that happen now and then. When I had the problem before, I noticed this white stuff squeezing out from around my tonsils when I looked at them in the mirror and cleared my throat. At that time, I was told it was no big deal and the tonsils often shed cells or something like that. I can't remember the medical term. This issue has just made me curious about them and the role they play with HIV.
IT'S A TOOMAH! UR GOING TO DIE!
Srsly Teddeh, you really are a drama queen of Gloria Swanson proportions.
MtD
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IT'S A TOOMAH! UR GOING TO DIE!
Srsly Teddeh, you really are a drama queen of Gloria Swanson proportions.
MtD
I know you're just joking, Matty. I purposely stated more than once that I'm sure it is nothing serious and that I forced myself to wait several weeks before going to the doc, so that I didn't freak out and run to the doc over every little thing. So, I know you're kidding me. Because if I were a drama queen, I would think it was throat cancer. I did just see the interview with Michael Douglas where he said he ignored throat issues before learning it was throat cancer. He had a wait and see attitude. Oh, he was losing his voice, too. I did smoke for 15 years, so I bet it is throat cancer!! I bet I'm one of those rare younger people who get throat cancer. Now, that would be worthy of a drama queen statement. :D
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I began January with losing my voice and having this spot on one of my tonsils. That lasted for a week, went away, and then came back a little--not as bad as before. Since then, that tonsil seems like there is something going on with it. I only have soreness when I swallow food or drink. It always feels like something is stuck on my tonsil--like behind the tonsil where you can't see.
I had major tonsil problems for a long time after I think I was infected. Not saying it was a direct result of but occurred at some point after. The feeling you describe of having something stuck on your tonsils may be tonsil stones. Kinda gross build ups of gunk in holes in your tonsils. I could feel when it would be building up and would flush the little buggers out.
My problems went on for years until I was treated with a high dose of steroids for a completely different problem. within a week my tonsils shrunk and haven't given me a single problem since. I've often wondered if there was a link between the HIV and the tonsil problems.
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There has been a long debate about this issue. If they're constantly inflamed, they're doing their job.. If they're removed, ?????
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There has been a long debate about this issue. If they're constantly inflamed, they're doing their job.. If they're removed, ?????
I had my tonsils out when I was a kid. Ted, Thats pretty much the problem I had. They wee constantly infected to the point where it felt like there was something stuck on, or in, them. At times (this is gross) but little white pieces of "stuff" would fall off my tonsils and I'd start gagging.
SOOOO if thats the case with you I would at least get it checked out. On the other hand, I'd like to know if there is something to not having them and HIV. They also took out my adenoids at the same time (they are just like tonsils but they are somewhere up there by your nose (I think).
Good luck
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There has been a long debate about this issue. If they're constantly inflamed, they're doing their job.. If they're removed, ?????
The thing is, tonsils are lymph tissue, similar to the lymph nodes spread throughout the body. While my tonsils are constantly getting inflamed and infected, none of my other lymph nodes are. So apparently my tonsils are having issues when my body isn't fighting infections. How do I know this? My white blood cell count is actually a little low, so clearly no systemic infection! ID doc thinks its something weird just with the tonsils and they are malfunctioning in some way, lol.
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I had my tonsils out as a kid as well. I am now 62. I would definitely get several different opinions on this matter before I went ahead and had them taken out. Try several ENT docs and you definitely should research this a lot online. Maybe check with the Mayo Clinic or some other teaching hospital, etc. HIV docs do not have any special knowledge about this. But a general Infectious Disease doc might be a good consult. Docs are all over the place on this and you might eventually find the right one who knows something the other ones dont and can treat your tonsils and maybe even cure the problems you are having without removing them. The tonsils were put there for a purpose so yanking them out should be the last option not the first option.
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I had my tonsils out as a kid as well. I am now 62. I would definitely get several different opinions on this matter before I went ahead and had them taken out. Try several ENT docs and you definitely should research this a lot online. Maybe check with the Mayo Clinic or some other teaching hospital, etc. HIV docs do not have any special knowledge about this. But a general Infectious Disease doc might be a good consult. Docs are all over the place on this and you might eventually find the right one who knows something the other ones dont and can treat your tonsils and maybe even cure the problems you are having without removing them. The tonsils were put there for a purpose so yanking them out should be the last option not the first option.
I actually have been to see more than one ENT. And the doc following me for my HIV isn't just an HIV doc, he is board certified in both Infectious Disease medicine as well as Family Medicine. I've seen several other Family Medicine/Internal Medicine doctors for my tonsils over the years, and in fact have had problems with my tonsils since I was a child. Even my pediatricians were seriously considering taking them out but my parents didn't want to put me though it I think.
Neither ENT thought having my tonsils out would have any serious repercussions considering my immune status. The one who will be taking them out said he was confident it would have no effect at all. I was just asking if anyone here had any personal experience to back up what my doctors said!
*edited for spelling
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Just found this:
http://www.thebody.com/Forums/AIDS/SideEffects/Q172439.html
It pretty much says removing the tonsils won't effect my immune system. That's one source of confirmation. Any personal experiences guys and gals?
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I had my tonsils and adenoids removed when I was about 5. So, not sure if being poz makes it different, but I can say that I've never had any throat issues as an adult -- neg or poz. I have heard that the procedure is "tougher" on adults than kids -- meaning the recovery is a bit more painful -- not sure why.
Mike
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I had my tonsils out when I was five or so because I kept getting tonsillitis. Never had any problems since aside from the occasional sore throat when I've got a head cold. I've been poz for fourteen years, no meds yet, so my lack of tonsils obviously hasn't had an effect on my hiv.
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I was infected 07/2002. I was getting strep throat about five times a year for two years when I finally went to an ENT and after one look they said, "Those need to come out!" I had my tonsils removed April 2009. I started meds October 2009, I would argue that any changes seen in my immune response were due to starting meds. But... I haven't had strep throat since they were removed. I haven't missed any work due to having strep throat. I'm so glad they're gone. I did have a few complications with surgery... I ended up with thrush afterwards and the scabs didn't fall off for about 16 days, when it should have been about 13-14.
But overall.. I'm glad they're gone!
Amanda
http://h1vpos1t1ve.blogspot.com/
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I was infected 07/2002. I was getting strep throat about five times a year for two years when I finally went to an ENT and after one look they said, "Those need to come out!" I had my tonsils removed April 2009. I started meds October 2009, I would argue that any changes seen in my immune response were due to starting meds. But... I haven't had strep throat since they were removed. I haven't missed any work due to having strep throat. I'm so glad they're gone. I did have a few complications with surgery... I ended up with thrush afterwards and the scabs didn't fall off for about 16 days, when it should have been about 13-14.
But overall.. I'm glad they're gone!
Amanda
http://h1vpos1t1ve.blogspot.com/
So.. just to follow up a little if you don't mind; have you responded "normally" to meds and everything? Did your doc mention anything about the tonsillectomy affecting your overall health? Thanks for the personal experience info! Great to hear someone else has had a similar experience!
odyssey
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My ID doc didn't say anything about the removal of my tonsils and the affects on my overall health. However, I have been healthier. I don't know as if there is a true, "normal" response to medications. Every body is different. I am reacting well to the medications and my numbers are currently (as of October 2010):
Cd4: 587
VL: 91
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Cool, good to know a fellow pozzie has had their tonsils out and not gone downhill from it!
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I am glad to hear you have until March to think about this. I went through a bad period with my tonsils in the late 80s, some time after I was in infected with the virus. They were constantly inflamed, and my doctor thought I should have them removed, although he told me that it is a very painful procedure for adults (sorry). He did recommend an option which I didn't really take seriously at first, but later did, as I really didn't like removing body parts unnecessarily. This is going to sound like a grandmother recipe, but hear me out, please. He told me to coat my mouth and throat with plain, unsweetened yogurt with live cultures every night before going to bed after brushing my teeth. Let the culture work uninterrupted on your throat all night while you sleep. At first the taste bothered me, but persevered. I began to notice a slow improvement over a few weeks time, and would you believe it, I haven't have a throat infection in over 20 years!. Every time I get the slightest uneasy feeling I do the yogurt treatment. I also avoid sugary drinks and sugar in general. Try it...I know it sounds simplistic, but it worked for me and I've thanked that doctor many times over the years. Our tonsils are there for a reason, otherwise they wouldn't be there. Thanks for listening and good luck. Please try this for a month!
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Not gonna lie... it was pretty painful.
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Oh, I know its gonna suck big time. But I have to say, I've gone through some nasty pain when I had my chest surgery, the suture healed up, a vein burst in my chest, a pint or two of blood collected under the skin until the pressure was too much and my skin literally ripped open. I can handle pain, lol. I figure a couple weeks of pure suckiness is better than years and years more of sustained pain.
As for the plain yogurt, that may be great for treating yeast issues, but I don't have any infection that is noteworthy in my throat. I've had it cultured numerous times. I'm sure if any of the numerous doctors I've seen over my 20 or so years of having throat problems (probably at least 40 or so MDs, ARNPs, PAs, etc.) someone would have mentioned yogurt if they thought it would have done anything. Thanks for the suggestion though, I'm glad it worked for you poz_mo.
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Well, I got a call from my ID/primary care doc today about the upcoming tonsillectomy, and he asked me if I would be willing to donate my tonsils to be used by HIV researchers in Boston. I was like, absolutely! I'm not going to be needing them, so I'd be glad to contribute them so they might help find out things that could help us all, or help others not get infected! Isn't this cool?
odyssey
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I'd be glad to contribute them so they might help find out things that could help us all
Thank you odyssey!
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I had constant problems with my tonsils - infections, inflammation, etc. I was likley poz at the time, which was no doubt the root cause - but not diagnosed then (long story.) I had them out, recovery was very hard - painful, and for me, lots of bleeding. I can tell you that it was definitely worth it - and no impact on my immune system. Excellent response to being on meds, and throat issues completely gone.
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Ok... You chums!
I have had a sore throat for two days... I think talking about all this tonsils got my tonsil space thinking I might need strep throat again. Argh. (<---- what the hell? Am I a pirate?)
Hehe... Just kidding, but yeah, I have a sore throat. If it persists and I end up with strep it will be the first time since my tonsils were removed. Side note: The girl I've been kissing has a sore throat too. (sad).
Have a happy Wednesday.
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Still have a sore throat, day 2.5. Sniffle...
I don't care. I'm going to Oregon for the weekend, leave in eight hours! Can't wait.
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Well, my tonsils are coming out on Friday, and the excess tonsillar tissue left over after the hospital pathologist does his or her thing will be put in two different fluids (one fixative, one medium) and FedExed to the Reagen Institute at Massachusetts General Hospital to arrive into the excited (I'm imagining) hands of the researchers Saturday morning.
They were going to personally come up (about 2 hours away) and collect the tissue, but they are also biopsying the gastrointestinal tract of another study participant the same day and that seems to need their presence a bit more, lol.
So, by Friday evening I will be tonsil-less and my biohazard tonsils will be making there way across state lines to Boston to help save the world (okay, maybe not, but still they're doing cool things).
odyssey
P.S. You guys better write some interesting stuff while I'm recovering to keep me entertained! ::) :P ;D :o
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Hi Ann,
this may be a little off topic, but 14 years with no meds, i'm just curious on how you found out you were positive. i'm sure you have said before, but i'm fairly new here. just curious.. I went thru a bad seroconversion so that was a big clue for me eventhouugh i tested every 6months.
mike
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Mike, I was only diagnosed because the person from whom I acquired my virus tested poz and he named me as a contact. Another woman had named him - she became very ill and was eventually diagnosed.
I also had a very severe seroconversion, but my doctor at the time told me it was "just some virus that would run it's course and go away." When I tested poz four years later, he had the nerve to tell me that if I had been a gay man and presented with the symptoms I had four years earlier, the first thing he would have done was test me for hiv. What a jerk. And yes, I know (for various reasons that I won't go into here) that the illness definitely was my seroconversion. My doctor (also the man's doctor) agrees with me.
My diagnosis explained a lot of things, but at the time I was also hep C positive and a lot of my problems were being caused by hiv accelerating the progression of my hep C. I did the treatment for hep C and no longer have it.
Sorry 'bout the brief hijack, Odyssey.
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I had my tonsils out when I was five or so because I kept getting tonsillitis. Never had any problems since aside from the occasional sore throat when I've got a head cold. I've been poz for fourteen years, no meds yet, so my lack of tonsils obviously hasn't had an effect on my hiv.
Same here Ann, I was 2 maybe 3 yrs old , when I had my tonsils out, long time ago ;)
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I had my Tonny's out around 5 ish. I remember lots of Ice cream in the hospital. Then the memory evolves into my mother throwing me on a mattress in the living room when we got home and feeding me mashed potatos once a day.
-w
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I had my Tonny's out around 5 ish. I remember lots of Ice cream in the hospital. Then the memory evolves into my mother throwing me on a mattress in the living room when we got home and feeding me mashed potatos once a day.
-w
Willy-
You know that whole mattress and mashed potato thing was Ms. P last weekend during your play session! Don't lie!
odyssey