Verneuil's disease AKA Hydradenitis Suppurative

I'm glad to hear about the news! I'll write the doc's name down and pass it around. I hope it will reach those who have gone through something similar and give them a much needed solution and/or relief.
 
This is great news about Atreides! It's also great news for anyone else suffering from this. Thank you for sharing, Ailen.

:hug: Atreides! Hurry and get totally well. :flowers:
 
Ailén said:
Another key factor in the recovery seems to be for all patients to be surrounded by all their loved ones. Laura's and Andromeda's presence during the surgery and after made a world of a difference, as well as Laura and Perceval doing all that driving to meet us faster. It wasn't easy, but we all made it back home safely, and Atreides is now getting healthier and healthier by the day. Feeling there is hope is super important. Once we found out exactly what it was he had, all kinds of doors started to open up. So, let's hope that the same happens to each and every one of you who are suffering from HS.
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Wow you guys, what a difference indeed for Atreides. :flowers: Great news!
 
voyageur said:
Ailén said:
Another key factor in the recovery seems to be for all patients to be surrounded by all their loved ones. Laura's and Andromeda's presence during the surgery and after made a world of a difference, as well as Laura and Perceval doing all that driving to meet us faster. It wasn't easy, but we all made it back home safely, and Atreides is now getting healthier and healthier by the day. Feeling there is hope is super important. Once we found out exactly what it was he had, all kinds of doors started to open up. So, let's hope that the same happens to each and every one of you who are suffering from HS.
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Wow you guys, what a difference indeed for Atreides. :flowers: Great news!
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Indeed. That is a wonderful news! All the bestest speedy in recovery to Atreides.

:hug:
 
Well i have just arrived back from Lyon ,after seeing Doctor Guillem. The consultation was arranged for last friday and operation for this tuesday.This was all arranged by the crew at the Chateau which I am forever grateful for.Really I could not say enough about the unbelievable amount of support and help I have had from them.In another forthcoming post maybe I will attempt to do so. Belibaste watched over me 24 hours a day from my arrival up to my departure -really unbelievable stuff. Thank you all for your support, your love and your care.

Alas my wishful thinking was that i could then hop on a plane thursday and back home to my family.A longer period of stay was impossible due to no support in being able to arrange child care for our son , and no time given off to The Hammer for being able to look after him.

Doctor Guillem after examining me says that it would be a minimum of two weeks before i could consider traveling back home after the operation.So the holiday time The Hammer has off due to her, coming up soon will hopefully be spent on enabling me to have the surgery carried out.

Actually having the consultation and talk with Doctor Guillem was amazing and beneficial.He spent close to an hour talking and explaining stuff in a humane manner.Very unlike any Dr I have ever come across.

I had an email waiting for me from Doctor Guillem on my arrival home which is for the attention of my Doctor ,asking him for help and collaboration regarding my case. This is in the hope that I can get the Danish state to cover my medical bills.Although the surgery itself is not really expensive , the stay and the hyperbaric treatment is. So fingers crossed.Below is part of the Letter from Dr Guillem to my doctor.

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This 50-year-old man has a typical hidrosadenitis suppurativa, which extensively affects his
perineum (from groins to peri-anal area, including scrotum) and more mildly axillary folds.
The lésions are strongly painful and constantly enflamed with several, fistulating and
probably subcutaneously communicating tunnels.

Although his armpit lésions are probably not deserved to be operated on, those of thé groins
are unlikely to résolve without surgical large excision. That is what I explained to him, along
with surgery modalities, post-operative complications and guidelines. He accepted thé
principle of a unique surgical procédure that would remove ail thé skin and thé underlying
sweat glands of thé perineum (from groins to peri-anal area, including inferior part of thé
scrotum). After this excision, spontaneous wound healing will be expected. Accélération of
this healing process can be obtained using hyperbaric oxygenotherapy and/or négative
pressure therapy.
Hospitalization is therefore planed on……….A minimal
2-weeks stay near thé hospital is warranted after thé surgery (thé first 8-10 days in thé
hospital), before thé patient feel trusting and healthy enough to go back to Denmark. In fact, I
really think that close collaboration with you will be helpful for thé management of this
patient. Do you think that we could collaborate with each other to propose thé best
management as possible, including post-operative folio w-up of thé wound healing and local
organization of hyperbaric oxygenotherapy and/or négative pressure therapy?

-------------------------------------------------------------------------------------------------------------

The above is part of the letter.I now await response from my Dr here in Denmark.If given the green light it will enable for me to have my family near by during said period and not have to worry about them.
 
Away With The Fairys said:
The above is part of the letter.I now await response from my Dr here in Denmark.If given the green light it will enable for me to have my family near by during said period and not have to worry about them.
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Happy to read that Away With The Fairys and hoping that you will have the green light so that you could have your family near by . :hug2:
 
Away With The Fairys said:
Below is part of the Letter from Dr Guillem to my doctor.

-------------------------------------------------------------------------------------------------------------

This 50-year-old man has a typical hidrosadenitis suppurativa, which extensively affects his
perineum (from groins to peri-anal area, including scrotum) and more mildly axillary folds.
The lésions are strongly painful and constantly enflamed with several, fistulating and
probably subcutaneously communicating tunnels.

Although his armpit lésions are probably not deserved to be operated on, those of thé groins
are unlikely to résolve without surgical large excision. That is what I explained to him, along
with surgery modalities, post-operative complications and guidelines. He accepted thé
principle of a unique surgical procédure that would remove ail thé skin and thé underlying
sweat glands of thé perineum (from groins to peri-anal area, including inferior part of thé
scrotum). After this excision, spontaneous wound healing will be expected. Accélération of
this healing process can be obtained using hyperbaric oxygenotherapy and/or négative
pressure therapy.
Hospitalization is therefore planed on……….A minimal
2-weeks stay near thé hospital is warranted after thé surgery (thé first 8-10 days in thé
hospital), before thé patient feel trusting and healthy enough to go back to Denmark. In fact, I
really think that close collaboration with you will be helpful for thé management of this
patient. Do you think that we could collaborate with each other to propose thé best
management as possible, including post-operative folio w-up of thé wound healing and local
organization of hyperbaric oxygenotherapy and/or négative pressure therapy?

-------------------------------------------------------------------------------------------------------------

The above is part of the letter.I now await response from my Dr here in Denmark.If given the green light it will enable for me to have my family near by during said period and not have to worry about them.
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That seems to be a dedicated doctor, happy to read it! :)
 
My best to you and your family AWTF in proceeding with this care. So glad you had such caring friends to help. :hug2:
 
Hi AWTF, I'm happy to hear you were able to consult with Dr. Guillem. I hope your doctor in Denmark gives you a positive response. It seems there is a light at the end of this painful tunnel. Hang in there, you are in my thoughts. :hug2:

I hope Atreides is also well on the road to recovery. I can't even imagine all you guys have suffered with this condition. Sending you strength! :flowers:
 
Lilou said:
Hi AWTF, I'm happy to hear you were able to consult with Dr. Guillem. I hope your doctor in Denmark gives you a positive response. It seems there is a light at the end of this painful tunnel. Hang in there, you are in my thoughts. :hug2:

I hope Atreides is also well on the road to recovery. I can't even imagine all you guys have suffered with this condition. Sending you strength! :flowers:
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Thanks.Latest is that Dr Guillem and my doctor here in Denmark have communicated.I am now awaiting a green light from patientkontoret here, to give me the green light.They are awaiting details from Dr Guillem then they will make their decision.

I too am wondering how Artreides is doing.I hope and suspect he is way on the road to recovery.
 
Away With The Fairys said:
Lilou said:
Hi AWTF, I'm happy to hear you were able to consult with Dr. Guillem. I hope your doctor in Denmark gives you a positive response. It seems there is a light at the end of this painful tunnel. Hang in there, you are in my thoughts. :hug2:

I hope Atreides is also well on the road to recovery. I can't even imagine all you guys have suffered with this condition. Sending you strength! :flowers:
Click to expand...

Thanks.Latest is that Dr Guillem and my doctor here in Denmark have communicated.I am now awaiting a green light from patientkontoret here, to give me the green light.They are awaiting details from Dr Guillem then they will make their decision.

I too am wondering how Artreides is doing.I hope and suspect he is way on the road to recovery.
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Mabey I have missed something but to me it sounds like this doctor of yours has only let you sit around in pain. It is wonderful that you got to go see a profesional who understands and cares. I am always in awe of the love I see on this forum. I'm sorry if this sounds strange but hearing your story and your awful doctor I just wish that doc would feel that kind of pain or worse. Are you still with the same doctor as when you first wrote in this thread? You have been "waiting" far to long! I hope you get this green light soon.
 
Horseofadifferentcolor said:
Mabey I have missed something but to me it sounds like this doctor of yours has only let you sit around in pain. It is wonderful that you got to go see a profesional who understands and cares. I am always in awe of the love I see on this forum. I'm sorry if this sounds strange but hearing your story and your awful doctor I just wish that doc would feel that kind of pain or worse. Are you still with the same doctor as when you first wrote in this thread? You have been "waiting" far to long! I hope you get this green light soon.
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No you have missed nothing Horseofadifferentcolor.My Danish Doctor was happy just to give me antibiotics to reduce inflammation,he has never once asked to have a look at the problem area and instead had a nurse look at it a few weeks back.He got me on a waiting list to see a specialist/dermatologist a long,long,long time ago and that time is in just under two weeks now.Approaching him will be with the attitude of a potential customer now though as after meeting and hearing Dr Guillem he is the one I want to be treated by.It seems from latest communications between both Doctors that it will be impossible to have the hypabaric chamber to quicken the healing process here in Denmark.

The truth of the matter is that there are many people with many difficulties on longer and longer waiting lists ,even here in Denmark.While i can still stand i dont feel i have room to complain.Regarding the love shown by the people connected with this forum ,you are absolutely correct.There is NO PLACE like it on this planet.Thank you for your kind thoughts.
 
Ailén said:
Another key factor in the recovery seems to be for all patients to be surrounded by all their loved ones. Laura's and Andromeda's presence during the surgery and after made a world of a difference, as well as Laura and Perceval doing all that driving to meet us faster. It wasn't easy, but we all made it back home safely, and Atreides is now getting healthier and healthier by the day. Feeling there is hope is super important. Once we found out exactly what it was he had, all kinds of doors started to open up. So, let's hope that the same happens to each and every one of you who are suffering from HS.
Click to expand...

That's so wonderful to hear :) I'm glad Atreides had so much loving support while going through that difficult time and procedure.

voyageur said:
My best to you and your family AWTF in proceeding with this care. So glad you had such caring friends to help. :hug2:
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I'll second that--take care, Away With The Fairys :flowers:
 
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