PD + Complications….

Kokoda

New Member
Country flag
Hi Everyone,

First this is an amazing resource and very glad I found it. People sharing stories is the only way to be really informed.
Maybe my story can help some others, and welcome any advice too!
At risk of TMI, but seems the more truth we tell, the better informed we will be.
I am in my 50’s, and had Pilonidal problems since my 20’s. Becomes very painful over a few days but then either drains, or get antibiotics.
I’ve had MS for about 20 yrs, but still work full time. I credit seeing the very best specialist and taking all latest drugs, and a good attitude. It’s getting harder all the time now.

I don’t know why the Pilonidal returned with a vengeance last week.
As I can’t walk far, Cycling is the exercise I need and love so maybe it’s from that?
I am scrupulous about hygiene and change my “bibs” or shorts even during a ride.
I’ve had some skin boils on my thighs that needed lancing and antibiotics.
So for past few years, I shower using Hibiclens to disinfect all pores and sweat in the butt area.
The other problem I have is with antibiotics. I had recurrent C Diff for 4 years. Can’t explain that either, as avoided antibiotics and also stringent hygiene. That is one awful illness.
Together with MS, those were bleak times with several hispitalizations. I am terrified of a return, as it’s a beast.
I was scheduled for a trial of a Neuro Stimulator to better control MS bladder symptoms, and reduce chance of UTI’s.

This means more antibiotics and risk of C Diff This is a wire inserted into the lower spine.
The Pilonidal started hurting again last week, out of the blue.
Was advised to see Colo Rectal surgeon in NYC. She confirmed I have one pit, draining thin fluid but likely spread to side buttock. Ordered MRI and Plastics consult this week.
She booked surgery for 11/28. Plan would be she opens and cleans it, and hopefully seals it with one stitch. Or she removes it and allows “secondary healing”, ie keep it open and change dressing daily etc. If more disease is shown, calls in Plastic surgeon to close it.
I’m not a doctor but I know that stitching over an infection can be bad news. But so is leaving it open and ongoing wound care.

Naturally the neuro stimulator surgery is cancelled due to risk from PD infection.
That’s a big deal because I also can’t risk more UTI’s.
Then I started reading these forums, and while the scar looks scary, the anatomy and logic of the Bascom-style cleft lift makes perfect sense.
In expert hands, it seems to heal quickly and few complications.
I also need to have procedure with minimal risk of infection and need for antibiotics, as PD surgery + C Diff would be the perfect nightmare!

Amazing that nobody in NYC seems to have a devoted Pilonidal surgery practice!!
Nearest I can find is at Pilonidal Treatment Center in NJ (Brian Schrager MD).

From what I read, PD experts don’t usually order MRI’s etc as it’s a clinical diagnosis, and the Bascom cleft lift is the best solution to almost every PD that doesn’t go away.
Am due to consult with him this week.

Meanwhile the PD is still sore and draining, otherwise pain would be even worse. I’m just showering several times daily and using Hibiclens to clean.

I emailed Dr Schrager over the weekend and he got back to me on Sunday, saying that ordering an MRI indicates surgeon may not be PD specialist.
He also said to avoid any excision done by a non-specialist.
I plan for consult with Dr Schrager this week.
One problem he is not in Cigna network but may be able to get Cigna to make an exception given what an expert sub-specialty this is.
If Cigna don’t help out, I don’t have cash to pay out of pocket, so probably see if I can fly to Dr Immerman in Eau Claire, WI.
He does take Cigna I believe but the hassle of flights and my wife coming too is not a great option.

If anyone’s interested, I’ll post as I go along.
I’ve learned sooo much on this forum, so would like to”pay it forward” and educate others from my experience.

All the best to everyone!

Kokoda Man
 

diseasedone

New Member
Country flag
Hi Everyone,

First this is an amazing resource and very glad I found it. People sharing stories is the only way to be really informed.
Maybe my story can help some others, and welcome any advice too!
At risk of TMI, but seems the more truth we tell, the better informed we will be.
I am in my 50’s, and had Pilonidal problems since my 20’s. Becomes very painful over a few days but then either drains, or get antibiotics.
I’ve had MS for about 20 yrs, but still work full time. I credit seeing the very best specialist and taking all latest drugs, and a good attitude. It’s getting harder all the time now.

I don’t know why the Pilonidal returned with a vengeance last week.
As I can’t walk far, Cycling is the exercise I need and love so maybe it’s from that?
I am scrupulous about hygiene and change my “bibs” or shorts even during a ride.
I’ve had some skin boils on my thighs that needed lancing and antibiotics.
So for past few years, I shower using Hibiclens to disinfect all pores and sweat in the butt area.
The other problem I have is with antibiotics. I had recurrent C Diff for 4 years. Can’t explain that either, as avoided antibiotics and also stringent hygiene. That is one awful illness.
Together with MS, those were bleak times with several hispitalizations. I am terrified of a return, as it’s a beast.
I was scheduled for a trial of a Neuro Stimulator to better control MS bladder symptoms, and reduce chance of UTI’s.

This means more antibiotics and risk of C Diff This is a wire inserted into the lower spine.
The Pilonidal started hurting again last week, out of the blue.
Was advised to see Colo Rectal surgeon in NYC. She confirmed I have one pit, draining thin fluid but likely spread to side buttock. Ordered MRI and Plastics consult this week.
She booked surgery for 11/28. Plan would be she opens and cleans it, and hopefully seals it with one stitch. Or she removes it and allows “secondary healing”, ie keep it open and change dressing daily etc. If more disease is shown, calls in Plastic surgeon to close it.
I’m not a doctor but I know that stitching over an infection can be bad news. But so is leaving it open and ongoing wound care.

Naturally the neuro stimulator surgery is cancelled due to risk from PD infection.
That’s a big deal because I also can’t risk more UTI’s.
Then I started reading these forums, and while the scar looks scary, the anatomy and logic of the Bascom-style cleft lift makes perfect sense.
In expert hands, it seems to heal quickly and few complications.
I also need to have procedure with minimal risk of infection and need for antibiotics, as PD surgery + C Diff would be the perfect nightmare!

Amazing that nobody in NYC seems to have a devoted Pilonidal surgery practice!!
Nearest I can find is at Pilonidal Treatment Center in NJ (Brian Schrager MD).

From what I read, PD experts don’t usually order MRI’s etc as it’s a clinical diagnosis, and the Bascom cleft lift is the best solution to almost every PD that doesn’t go away.
Am due to consult with him this week.

Meanwhile the PD is still sore and draining, otherwise pain would be even worse. I’m just showering several times daily and using Hibiclens to clean.

I emailed Dr Schrager over the weekend and he got back to me on Sunday, saying that ordering an MRI indicates surgeon may not be PD specialist.
He also said to avoid any excision done by a non-specialist.
I plan for consult with Dr Schrager this week.
One problem he is not in Cigna network but may be able to get Cigna to make an exception given what an expert sub-specialty this is.
If Cigna don’t help out, I don’t have cash to pay out of pocket, so probably see if I can fly to Dr Immerman in Eau Claire, WI.
He does take Cigna I believe but the hassle of flights and my wife coming too is not a great option.

If anyone’s interested, I’ll post as I go along.
I’ve learned sooo much on this forum, so would like to”pay it forward” and educate others from my experience.

All the best to everyone!

Kokoda Man
I hope Cigna covers this surgeon for you. I have read of this Pilonidal center in NJ on this board as well. It surprises me that there aren't centers like this in every state.
 
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