Verneuil's disease AKA Hydradenitis Suppurative
- Thread starter Laura
- Start date
Laura said:
Supposedly he took the pics for 'bizarro-ness' and actually purchased it to donate to a local hospital.
Hope Atreides has a super-speedy recovery!
Gimpy said:Was Atriedies able to make it home over the weekend? Hope so!
Yes, we drove over yesterday with the van and a bed in the back and I drove him home myself while Perceval brought the car back. It was a long trip. We were on the road over 10 hours there and back. He would NOT have made it scrunched up in the back seat of the car for 5 hours.
The medical supply company delivered a months worth of supplies and he went to the Toulouse hyperbaric chamber today. Tomorrow, the ambulance will start transporting him there and back for the next month. The hyperbaric doctor suggested two sessions a day and since it is an hour to get there, we agreed. Go, do two sessions, come home. Double the speed of healing. They are also doing every blood test in the book, so that will be interesting with him on the KD.
As a side note: three years ago, I would not have been able to travel for ten hours, and certainly not just two days after returning from a three day trip with a 4 hour train ride each direction. I would have been laid up in bed for a week or longer. But heck, I got home, felt fine, hit the ground running! No swelling, no pain, no excessive tiredness. Amazing.
EmeraldHope
The Living Force
I am very glad to hear . I know as a Mom you must worry. Hope he gets better double quick, and I am glad that your stamina has improved so much. Best wishes.
Gimpy said:My eye problems are healing well with the KD diet, but I'm still quite weak. The P/T folks warned me its going to be hard, and they were spot on. I'm hanging in there though.
I can only say that it takes time. And the older a person is, and the more they abused their body, the longer it may take. But this experiment with KD and the exercise really did something, I think. I'm not being faithful about the exercising right now, but we were dedicated for the 6 initial weeks of getting into good ketosis and stimulating mtDNA, and it seems to be an ongoing process. Heck, my legs don't feel like they are weighted with lead anymore when I climb the stairs! And I actually have fairly fast reactions to taking in nourishment that I never had before: I can feel the body utilizing the fuel and the heat rising! I've been cold all my life and now, all of a sudden, just have a bowl of broth and I warm right up!
doublea1535
Jedi Council Member
Laura said:
That's great! Really shows the improvements the KD can make in a persons health.
Atreides keeps recovering, and the wounds are healing at a record speed thanks to the hyperbaric chamber! Even the nurses are positively surprised! He is stilll very tired with all the drugs they have given him, but at least the pain is much less sharp now.
For those of you who have this condition, I can only say that, based on Atreides' experience and that of the other patients that we met, surgery seems to be the ticket to full recovery, provided that it is well done and the glands removed. In the worst case, people experience a small recurrence in areas where the glands haven't been removed, in which case they immediately go to this surgeon, get the nodule removed with a small incision, and that's it. No more constant suffering. At most, one small surgery every three years.
This doctor is awesome, and I promised I would share his contact information here in case anybody here:
a) lives in Europe and wishes to consult with him.
b) knows a doctor who might be interested in knowing more about this condition. He is working on developing a network of surgeons all around France, and hopefully in other countries as well.
Doctor Philippe Guillem
Clinique du Val d'Ouest
29, chemin de la Vernique
69130 Ecully, France
(+33) (0)4 78 81 67 61
We met several of his patients and they all love him. Atreides was super glad to have met him too. He is very human, spends a long time with his patients before and after the surgery, and seems to be really dedicated to helping in all the ways he can, not just with the surgery, but also with any arrangements that make his patients' stay at the clinic easier.
The non-profit who recommended this doctor is called Solidarité Verneuil, and the lady in charge is called Hélène Raynal. She has had a heck of a life, but her recovery is very inspiring. She works constantly toward bringing patients together, creating this network of doctors, and helping others psychologically. She went to visit Atreides every day at the clinic. It was really heart warming to meet all those people.
So, we cannot recommend this doctor and team enough, if you have any possibility of coming to France for a treatment, or of putting your own surgeon in touch with them.
It was a happy coincidence that just as we were researching about the hyperbaric chamber, Dr. Guillem prescribed it. He does it with all patients, and the results are trully amazing. So, that's something else you might need to talk to your doctors about, wherever you are in the world.
In short, there is hope, people! Even if it means having surgery today, with all the suffering that this implies. Atreides didn't hesitate to have everything removed at once, given the option. And it has been totally worth it so far. :D
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.
For those of you who have this condition, I can only say that, based on Atreides' experience and that of the other patients that we met, surgery seems to be the ticket to full recovery, provided that it is well done and the glands removed. In the worst case, people experience a small recurrence in areas where the glands haven't been removed, in which case they immediately go to this surgeon, get the nodule removed with a small incision, and that's it. No more constant suffering. At most, one small surgery every three years.
This doctor is awesome, and I promised I would share his contact information here in case anybody here:
a) lives in Europe and wishes to consult with him.
b) knows a doctor who might be interested in knowing more about this condition. He is working on developing a network of surgeons all around France, and hopefully in other countries as well.
Doctor Philippe Guillem
Clinique du Val d'Ouest
29, chemin de la Vernique
69130 Ecully, France
(+33) (0)4 78 81 67 61
We met several of his patients and they all love him. Atreides was super glad to have met him too. He is very human, spends a long time with his patients before and after the surgery, and seems to be really dedicated to helping in all the ways he can, not just with the surgery, but also with any arrangements that make his patients' stay at the clinic easier.
The non-profit who recommended this doctor is called Solidarité Verneuil, and the lady in charge is called Hélène Raynal. She has had a heck of a life, but her recovery is very inspiring. She works constantly toward bringing patients together, creating this network of doctors, and helping others psychologically. She went to visit Atreides every day at the clinic. It was really heart warming to meet all those people.
So, we cannot recommend this doctor and team enough, if you have any possibility of coming to France for a treatment, or of putting your own surgeon in touch with them.
It was a happy coincidence that just as we were researching about the hyperbaric chamber, Dr. Guillem prescribed it. He does it with all patients, and the results are trully amazing. So, that's something else you might need to talk to your doctors about, wherever you are in the world.
In short, there is hope, people! Even if it means having surgery today, with all the suffering that this implies. Atreides didn't hesitate to have everything removed at once, given the option. And it has been totally worth it so far. :D
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.
Horseofadifferentcolor
Jedi Council Member
Thankyou for sharing. I 'm glad he is healing well. Big hug :)
