Verneuil's disease AKA Hydradenitis Suppurative
- Thread starter Laura
- Start date
Laura said:
Well thats a relief to hear. How much dumber can I get. (please dont answer that) ive been twiddling my thumbs , reciting Shakespeare , sleeping in it. Read a book but the pages get wet. Half an hour is going to be much more fun.
My blood group by the way is A+ , the only time iv´e ever had an A+.
Franco
Jedi Master
I typically spend 45 - 90 mins in the bath almost every day, I do this by reading.
I don't know why I do it, but I do it in winter and summer in a hot bath.
If I'm reading something particularly interesting I don't want to get out until it's freezing cold.
I do sometimes fall asleep.
I've only ever wet a book a handful of times.
I used to sleep in the bath with my head underwater, I wouldn't advise it as my ears got very blocked with wax, it was only for a short while and never again.
I don't know why I do it, but I do it in winter and summer in a hot bath.
If I'm reading something particularly interesting I don't want to get out until it's freezing cold.
I do sometimes fall asleep.
I've only ever wet a book a handful of times.
I used to sleep in the bath with my head underwater, I wouldn't advise it as my ears got very blocked with wax, it was only for a short while and never again.
EmeraldHope
The Living Force
I just had a chance to catch up on this thread. Wow. I have had auto immune issues for a long time ( cat scratch syndrome), and have always gotten these cysts on my hinney. In the last year I lost a ton of weight, and kept getting those things under my arms, usually both arm pits at the same time. I am o neg for what it is worth.
Daenerys said:
I dont know your age Daenerys, but just wanted to say that i started to get growths under my arms. both at the same time when i was in my late teens , i know how you feel. This went on and off into my twenties then nothing under my arms until about 4 years ago for a short period. im now 50.
The HS symptoms in the groin and bum area started around 7-8 years ago maybe a little longer.Definitely early 40´s. Presently im using the mix that i mentioned earlier in this thread , tumeric . magnesium citrate powder , ascorbic acid(vitamin C powder) teaspoon of each with a good blob of dmso which makes a thick kind of paste. enough for a few servings :)
It is bringing some slight relief , and possibly may have better results for those in early stages of boils , cysts etc.
EmeraldHope
The Living Force
Away With The Fairys said:
I am 43. I had never had them until this past year. I kept popping them and the stuff that came out was about the worst smelling foul mess I have ever smelled. ( sorry for the yucky mental picture there )
The ones on my hiney started about 8 years ago, on and off. I have always gotten them on occasion in the groin area since puberty.
Very sorry to hear that you have this problem too, Daenerys.
Today I read a bit more on this, because unfortunately, although the new changes on the diet are doing great things to Atreides (he's never had so much energy in his life!), very recently he started having some recurrent issues with HS. He will soon go for the "glue" surgery, but some new ones have appeared, and we are worried that they might develop fistulas if nothing is done soon. Cold baths seem to help, and so does keeping the affected areas dry, but everything we've tried has only worked for making the symptoms less painful, NOT removing the problem.
So, I found a specialist in France. There is a pretty good blog (all in French, unfortunately) here: http://www.afrh.fr/la_maladie_de_verneuil_ou_h/
So, here is a hypothesis. Apologies if it sounds too simple or silly, but FWIW, it did give us some hope:
The "disease" (which is NOT a disease but a consequence of the aquatic ape evolution, IMO) has to do with the clogging up and over production of keratin around the follicles, and secreted by the aprocrine glands. Ok. These glands seem totally useless today, if you ask me. Their only purpose is to produce pheromones, and sweat (but we sweat through millions of skin glands all around the body).
In studies where surgery was required (and notice that surgery is considered to be the most effective "cure" - WARNING: do not visit that link if you are sensitive to looking at pictures of serious cases of this condition), what I'm seeing is that the trick was to make an incision deep enough so that the aprocrine glands got removed with it. They also talk about cutting a wider area in case there are tiny pockets of infection around, which could, I think, be explained by the fact that since these glands are located in clusters, the bigger the incision, the greater the chance of removing all glands.
I was reading in several forums that people who got the glands removed together with their abscess never got a recurrence.
However, I can't find one single paper where they talk about removing the apocrine glands as a preventive measure against HS. But it IS done in cases of Bromhidrosis and Hyperhydrose (excessive sweat and odor). The interesting thing is that for those types of conditions, they described permanent treatments involving the removal of the apocrine glands! Either by big incisions or through liposuction.
What caught my attention the most was the possibility of having a "Tumescent liposuction" done:
http://dermnetnz.org/procedures/liposuction.html
It involves local anesthesia, a much faster healing time (1-3 weeks), smaller wounds, and less pain.
Another possibility suggested by this French doctor is to have a surgery with a bigger incision, and then helping the healing with a hyperbaric chamber, which reduces to healing time to approximately 3 weeks instead of the usual 8-12 weeks. I am still hoping that something like the liposuction would be doable, since it sounds much less complex and certainly less traumatic.
There seems to be a third option, using laser therapy, but I haven't read enough about it.
Anyway, I REALLY don't know enough about this, but will be making some phone calls tomorrow to see if this doctor has any more suggestions. She claims that many surgeons can perform the surgery, since it is the same as for any kind of abscess. But a milder option would be ideal.
It really is irritating and sad to see how useless the medical system is, except for the mechanical part. Come on! The problem involves a specific type of gland, but "there is no treatment" until an infection has formed? Unless I'm missing something major here, it's not rocket science, people! You just remove the cause. In this particular case, there doesn't seem to be any side effect from not having these glands.
Any thoughts would be appreciated.
And I wanted to say to all those who suffer from this that although I can't really imagine what it feels like, I sincerely hope that together, we can find a solution. It might be better to do all you can now, while there are still possibilities to have a surgery done if needed. We don't know what things will be like in the future. So, "keeping things at bay" might be OK if your problem is not severe, but perhaps looking for a more definite solution would save you a lot of suffering later?
Big
to all.
Today I read a bit more on this, because unfortunately, although the new changes on the diet are doing great things to Atreides (he's never had so much energy in his life!), very recently he started having some recurrent issues with HS. He will soon go for the "glue" surgery, but some new ones have appeared, and we are worried that they might develop fistulas if nothing is done soon. Cold baths seem to help, and so does keeping the affected areas dry, but everything we've tried has only worked for making the symptoms less painful, NOT removing the problem.
So, I found a specialist in France. There is a pretty good blog (all in French, unfortunately) here: http://www.afrh.fr/la_maladie_de_verneuil_ou_h/
So, here is a hypothesis. Apologies if it sounds too simple or silly, but FWIW, it did give us some hope:
The "disease" (which is NOT a disease but a consequence of the aquatic ape evolution, IMO) has to do with the clogging up and over production of keratin around the follicles, and secreted by the aprocrine glands. Ok. These glands seem totally useless today, if you ask me. Their only purpose is to produce pheromones, and sweat (but we sweat through millions of skin glands all around the body).
In studies where surgery was required (and notice that surgery is considered to be the most effective "cure" - WARNING: do not visit that link if you are sensitive to looking at pictures of serious cases of this condition), what I'm seeing is that the trick was to make an incision deep enough so that the aprocrine glands got removed with it. They also talk about cutting a wider area in case there are tiny pockets of infection around, which could, I think, be explained by the fact that since these glands are located in clusters, the bigger the incision, the greater the chance of removing all glands.
I was reading in several forums that people who got the glands removed together with their abscess never got a recurrence.
However, I can't find one single paper where they talk about removing the apocrine glands as a preventive measure against HS. But it IS done in cases of Bromhidrosis and Hyperhydrose (excessive sweat and odor). The interesting thing is that for those types of conditions, they described permanent treatments involving the removal of the apocrine glands! Either by big incisions or through liposuction.
What caught my attention the most was the possibility of having a "Tumescent liposuction" done:
http://dermnetnz.org/procedures/liposuction.html
It involves local anesthesia, a much faster healing time (1-3 weeks), smaller wounds, and less pain.
Another possibility suggested by this French doctor is to have a surgery with a bigger incision, and then helping the healing with a hyperbaric chamber, which reduces to healing time to approximately 3 weeks instead of the usual 8-12 weeks. I am still hoping that something like the liposuction would be doable, since it sounds much less complex and certainly less traumatic.
There seems to be a third option, using laser therapy, but I haven't read enough about it.
Anyway, I REALLY don't know enough about this, but will be making some phone calls tomorrow to see if this doctor has any more suggestions. She claims that many surgeons can perform the surgery, since it is the same as for any kind of abscess. But a milder option would be ideal.
It really is irritating and sad to see how useless the medical system is, except for the mechanical part. Come on! The problem involves a specific type of gland, but "there is no treatment" until an infection has formed? Unless I'm missing something major here, it's not rocket science, people! You just remove the cause. In this particular case, there doesn't seem to be any side effect from not having these glands.
Any thoughts would be appreciated.
And I wanted to say to all those who suffer from this that although I can't really imagine what it feels like, I sincerely hope that together, we can find a solution. It might be better to do all you can now, while there are still possibilities to have a surgery done if needed. We don't know what things will be like in the future. So, "keeping things at bay" might be OK if your problem is not severe, but perhaps looking for a more definite solution would save you a lot of suffering later?
Big
to all.
Horseofadifferentcolor
Jedi Council Member
I am soooooo very sorry this is coming back. I really hoped that yalls latest diet was the key. This is very quick to return from last time. Compared to what I experienced he should be just now be healed up from the last go around. Is it at the same surgical site or a new one? Again so sorry.
Horseofadifferentcolor said:
Well, it could be due to changes in the body and "die-off" reactions. We don't know. It might simply require more patience.
The same one. This second surgery was already scheduled. But the new recurrence is concerning us, certainly. We keep learning though! Thanks.
Horseofadifferentcolor
Jedi Council Member
I might be wrong but I was thinking that the pathways that are created from the body trying to heal from this can not really be gotten out with the main fistula area. So it just keeps on until enough pressure has built that it creates another pocket.I had four years between the first of my surgeries.
I wish these idiot doctors knew more. My surgeon just says 'well it happens to some people we don't know why or if they will come back'. Grrrrr
There is always a cause for an effect to happen, and that is what is not being addressed in the medical circles.
I don't think my doc would react well if I asked about a gland in body from being an aquatic ape would go over very well.lol :P
I wish these idiot doctors knew more. My surgeon just says 'well it happens to some people we don't know why or if they will come back'. Grrrrr
There is always a cause for an effect to happen, and that is what is not being addressed in the medical circles.
I don't think my doc would react well if I asked about a gland in body from being an aquatic ape would go over very well.lol :P
Some more things, in case any of you are interested:
This paper talks about a case of a leg amputation, which led to HS-type symptoms. We have thought about the heat and humidity factor, because it seems that dry and cold environments help:
Then, there is this video which has, IMO, some good points (e.g. the smoking and obesity as a cause BS, and several treatments):
http://www.youtube.com/watch?v=3gdqZR7SRHs&feature=relmfu
I'm confused. Some say the main cause is an inflammation in the apocrine glands, and some (like in the video above) claim that it doesn't have much to do with the glands themselves. It happens in the follicles, and nobody knows why. There is even one paper in French where they describe a study where no difference was found in the structure, size and amount of apocrine glands in patients with HS compared to controls. However, they don't explain WHY it happens to always manifest in the areas where these glands are situated. So, it might still be good to have them removed anyway? Together with the polycomedonal follicles?
Then, there is this: Hidradenitis suppurativa: a disease of the absent sebaceous gland? Sebaceous gland number and volume are significantly reduced in uninvolved hair follicles from patients with hidradenitis suppurativa
. It's not downloadable for free, unfortunately.
This paper talks about a case of a leg amputation, which led to HS-type symptoms. We have thought about the heat and humidity factor, because it seems that dry and cold environments help:
Then, there is this video which has, IMO, some good points (e.g. the smoking and obesity as a cause BS, and several treatments):
http://www.youtube.com/watch?v=3gdqZR7SRHs&feature=relmfu
I'm confused. Some say the main cause is an inflammation in the apocrine glands, and some (like in the video above) claim that it doesn't have much to do with the glands themselves. It happens in the follicles, and nobody knows why. There is even one paper in French where they describe a study where no difference was found in the structure, size and amount of apocrine glands in patients with HS compared to controls. However, they don't explain WHY it happens to always manifest in the areas where these glands are situated. So, it might still be good to have them removed anyway? Together with the polycomedonal follicles?
Then, there is this: Hidradenitis suppurativa: a disease of the absent sebaceous gland? Sebaceous gland number and volume are significantly reduced in uninvolved hair follicles from patients with hidradenitis suppurativa
. It's not downloadable for free, unfortunately.
Ailén said:
Really sorry to hear about the situation with Artreides. As always hang on in their bro!
Tomorrow i have an appointment with my doctor who really does not have a clue. I went to see him about two weeks ago and asked him for a referral to the hospital so i could get myself attached to an I V drip as I was very inflamed and pain levels where up again.He reminded me that my appointment to see the specialist was in November and then prescribed some tetracylin for me and made an appointment for me to see him tomorrow.
Well pain levels are down and I can walk , but i am still swollen in various parts , and still leaking ,always am , so I dont know what he will suggest tomorrow.
I guess he does not want me to go into the hospital until the specialist is seen.
If i could remain at the level I am at now until November I suppose I could make it , but it wont stay at this level I know this for sure.
The tetracylin stated I could not have any magnesium or zinc so i have had to cut them out for the last two weeks.
Still taking two baths a day.
Any news and I will update.
Once again my thoughts are with you Arteides!
AWTF, try Osmogel in a bandage overnight for temporary help. I think you need to take some papers in to this doctor and let him know that you know what it is, what it is doing, what will happen and some responsibility lies on him if he knows this and does not follow the proper course. Print out the stuff from that website Ailen linked to above. Scare the heck out of him.
Laura said:
Thanks will do all of the above.