Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Hi All, After reading about the possible benefits on another list, I asked Josh's ped neph about the possibility for Josh ( I was looking for any possibility as he had been 3+ for about a year). The ped neph said it was only indicated in cases where a tonsillectomy was recommended for constant throat infections, in other words for non-igan reasons. Erna T (Josh 13, igan, for almost 6 yr, 4 gm Salmon Oil, 5 mg. Monopril, 400 iu Vitamin E, Empower+ Vitamin/Mineral Supplements, lots of prayer) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2001 Report Share Posted February 17, 2001 Erna, as being the mom of an IgAN child, I know what you mean. was diagnosed three months ago, and my husband and I's world will never be the same. I ask myself, " Will he be able to go to college away from us, like all the other kids? " , and " Will he be healthy enough to work consistently and support a family? " . I wish I could have the IgAN and not . > >Reply-To: iga-nephropathy >To: <iga-nephropathy > >Subject: re: tonsillectomy >Date: Sat, 17 Feb 2001 12:33:16 -0700 > >Hi All, >After reading about the possible benefits on another list, I asked Josh's >ped neph about the possibility for Josh ( I was looking for any possibility >as he had been 3+ for about a year). The ped neph said it was only >indicated in cases where a tonsillectomy was recommended for constant >throat infections, in other words for non-igan reasons. >Erna T (Josh 13, igan, for almost 6 yr, 4 gm Salmon Oil, 5 mg. Monopril, >400 iu Vitamin E, Empower+ Vitamin/Mineral Supplements, lots of prayer) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 There was a bit of resigned acceptance of tonsillectomy for a couple of years, say around 96-98, after the popularisation of the Internet and the promotion of tonsillectomy on it by the IgAN Foundation (or its IgAN web page, before it became the Foundation, which thousands of patients read). Some nephrologists willing to go along with patients' wishes. There was also innuendo that nephrologists had been deliberately ignoring an effective treatment because they weren't interested in treating patients until they were on dialysis (of course, this is ridiculous, and totally false -- as evidenced by all the effort and research going on right now on genes, angiotensin etc.). But after a few more years of clinical evidence and further research and sober thought, it's pretty clear that tonsillectomies have little benefit in treating IgAN, except as Erna mentions below. There just are no miracle cures folks, except for the mounting evidence that angiotensin converting enzyme inhibitors (ACE inhibitors) and angiotensin II receptor blockers (ARB's) have renal protective effects that are independent of their role in lowering blood pressure. Pierre > Erna Topliffe wrote: > > Hi All, > After reading about the possible benefits on another list, I asked > Josh's ped neph about the possibility for Josh ( I was looking for any > possibility as he had been 3+ for about a year). The ped neph said it > was only indicated in cases where a tonsillectomy was recommended for > constant throat infections, in other words for non-igan reasons. > Erna T (Josh 13, igan, for almost 6 yr, 4 gm Salmon Oil, 5 mg. > Monopril, 400 iu Vitamin E, Empower+ Vitamin/Mineral Supplements, lots > of prayer) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Hopefully, Marty, Cyndi's comment just read wrong. No one suffering from this disease should say something that appears degrading to another sufferer. Everyone is just trying their best to cope and live a somewhat normal life. Pam > Cyndi said: > > I think some of the people that ended up on dialysis waited till too late in the game. They were desperate people trying anything. > > > > Previously, I had said: Also, I tried the tonsillectomy quite late in the game. > > Cyndi, for your information, I was not a desperate person trying anything. I was unaware of the news about tonsillectomies possibly being beneficial until about 6 months before having the tonsillectomy performed. Working full time and being very busy it took me about six months to get the surgery arranged. > > One should be careful about generalizing about people and comments like yours above can sound degrading to people on the list (such as myself) who are just trying to help other IgAN sufferers. > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 I greatly value every members input into this group. I'm sure Cyndi didn't intend her statement to be degrading, although I can see how it could be interpreted that way. It would be best if we do not allow ourselves to get into a discussion about the value of tonsillectomies, beyond what has already been stated. We know that there are people who believe in them, and those who don't. We could argue endlessly about the merits of whatever evidence is available. Until some new clinical trial comes along, there is really nothing that can be said that hasn't already been said, at some point. Please refer to the message archive if necessary. The only thing I would add is that the adjective " desperate " can be applied to newlie-diagnosed patients with mild IgAN as much as it can to those among us who are more advanced into the disease. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Of course... I hadn't even read Marty's post yet... I suspect anyone with any serious disease is desperate... We all want to squeeze out as many " quality " days as possible... I find this disease degrading because " I " want to assign blame, and be grumpy but I can't If any studies of import come out I hope whomever will send me an email...guerrerocyndi@... > > Cyndi said: > > > > I think some of the people that ended up on dialysis waited till > too late in the game. They were desperate people trying anything. > > > > > > > > Previously, I had said: Also, I tried the tonsillectomy quite late > in the game. > > > > Cyndi, for your information, I was not a desperate person trying > anything. I was unaware of the news about tonsillectomies possibly > being beneficial until about 6 months before having the tonsillectomy > performed. Working full time and being very busy it took me about six > months to get the surgery arranged. > > > > One should be careful about generalizing about people and comments > like yours above can sound degrading to people on the list (such as > myself) who are just trying to help other IgAN sufferers. > > > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Mark, the salt-free salt contains tons of potassium which is worst than salt for IgA. Pam > Hi Pierre, > > I am new to this group. I am here on behalf of my wife, Soonyoung. We > were told over the phone of her diagnosis of IgAN and the doctor will > have us in to discuss treatment options with in the next two weeks. > > " desperate " is very applicable here. I thought Soonyoung and I would > grow old together and I had always hoped I was the first to go any > scenrio that presents itself. > > Between Friday and now, Sunday evening I have been consumed with this > topic and have read more on this condition then any thig else I have > ever been interested in. Whereas I knew nothing of Kidney's other then > they clean the blood to now thinking I could have an intelligent > coversation with a Nephrologist. > > According to what I have read - Soonyoung is in Late Stage. 4gm in 24r > and significantly high blood pressure (which is what led us to > get a diagnois). > > Ever since the high blood pressure was identified they have tried > different medicines. So for none have been effective. This weekend we > got serious (read desperate). We bought fish oil and she is taking 12 > capsules a day. We have cut protein down to 60g a day. We have bought > saltfree salt. And we discuss every thing she now eats. I am > rearranging my workday to be home in the evenings early so we can begin > exercising. Our goal is to reduce her blood pressure. Concentrate on > limiting protein intake. Even in our Nephrologist is on the side of > those who think Tonsillectomy is not a valid treatment - we will have > it done as soon as possible anyway. > > I look forward to fellowship with you that belong to this newsgroup - I > imagine that all of you have already been through this first > troublesome hours and I hope to be able to gleen from you all some way > to find hope in what appears to be despair. > > Respectfully, > > Mark > > Re: Re: tonsillectomy > > > I greatly value every members input into this group. I'm sure > > Cyndi didn't > > intend her statement to be degrading, although I can see how it > > could be > > interpreted that way. It would be best if we do not allow > > ourselves to get > > into a discussion about the value of tonsillectomies, beyond what has > > already been stated. We know that there are people who believe in > > them, and > > those who don't. We could argue endlessly about the merits of whatever > > evidence is available. Until some new clinical trial comes along, > > there is > > really nothing that can be said that hasn't already been said, at some > > point. Please refer to the message archive if necessary. The only > > thing I > > would add is that the adjective " desperate " can be applied to > > newlie-diagnosed patients with mild IgAN as much as it can to > > those among us > > who are more advanced into the disease. > > Pierre > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 Acta Otolaryngol Suppl 1999;540:64-6 Related Articles, Books Prognosis of tonsillectomy in patients with IgA nephropathy.Akagi H, Nishizaki K, Hattori K, Kosaka M, Fukushima K, Doi A, Masuda Y.Department of Otolaryngology, Okayama University Medical School, Japan.IgA nephropathy (IgAN) is a type of chronic glomerulonephritis characterized by IgA deposits mainly in the mesangial area. It does not have so favourable a prognosis as was initially thought. This nephropathy is one of the diseases affected by tonsillar focal infections, and there have been patients in whom tonsillectomy has been effective. In this study, 24 patients with IgAN were followed for more than 2 years after tonsillectomy and studied clinicopathologically. Remission of proteinuria was observed in 41.7% of the patients 6 months after surgery and in 50.0% 2 years after surgery. At 2 years after surgery, patients with minor and focal segmental renal lesions showed a significantly higher rate of remission of proteinuria than patients with diffuse renal lesions. There was no statistically significant difference between positive and negative patients in the rate of remission of proteinuria based on any parameter of the tonsillar provocation test at any time after surgery.PMID: 10445082 [PubMed - indexed for MEDLINE] Re: tonsillectomy Of course...I hadn't even read Marty's post yet...I suspect anyone with any serious disease is desperate...We all want to squeeze out as many "quality" days as possible...I find this disease degrading because "I" want to assign blame, and be grumpy but I can'tIf any studies of import come out I hope whomever will send me an email...guerrerocyndi@...> > Cyndi said: > > > > I think some of the people that ended up on dialysis waited till > too late in the game. They were desperate people trying anything. > > > > > > > > Previously, I had said: Also, I tried the tonsillectomy quite late > in the game.> > > > Cyndi, for your information, I was not a desperate person trying > anything. I was unaware of the news about tonsillectomies possibly > being beneficial until about 6 months before having the tonsillectomy > performed. Working full time and being very busy it took me about six > months to get the surgery arranged. > > > > One should be careful about generalizing about people and comments > like yours above can sound degrading to people on the list (such as > myself) who are just trying to help other IgAN sufferers.> > > > Marty Quote Link to comment Share on other sites More sharing options...
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