Dr. Sternberg or Dr. Immerman??

gogojojo

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My son had the cleft lift procedure done over a year and a half ago by a surgeon in our home star (it was a 5 hour drive).
He had VERY extensive pilonidal disease.
Although his scar seemed lumpy, we thought the surgery cured him
However, 5 months ago, after shaving, he developed a large lump on his buttock, near his anus. We took him back to the surgeon who said it was a boil and not a recurrence. He gave him antibiotics and sent us home.
It never fully healed and has swollen and leaked intermittently since then.
It swelled up to the size of a golf ball last week so we went to a local surgeon to see what’s going on. He lanced it to drain and said it IS a recurrence of the pilonidal disease.
Upset and worried, we went back the surgeon who did the operation. This is was day before yesterday. He still says he really doesn’t think it’s recurrence and again sent us home with antibiotics.
Last night as I was changing the dressing on his wound I noticed three very tiny holes along the old incision line form the cleft lift. They were very hard to see. The lump near his anus is still hard and swollen too. This has to be a recurrence.
He also developed a very painful boil on his thigh yesterday. Where it touches the other thigh also has some smaller bumps. Now we’re worried about some kind of resistant infection (this Augmentin hasn’t helped anything).
At this point I think we need to see an absolute top surgeon to treat this.
We are willing to travel to either San Franscisco to see Dr. Sternberg or to Wisconsin to see Dr. Immerman (these two seem to be the best in the country based on my research).
Which do you recommend and why?
We live in Asheville, NC.
 

gogojojo

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Adding that we ended up at the ER for the boil on his leg due to rapidly spreading cellulitis around it. The doc at urgent care was concerned about possible sepsis and sent us strait to the ER.
They took him off Augmentin and started Bactrim and Keflex. The cellulitis has improved significantly since.
There’s been no reduced swelling or change in the lump on his butt. If anything the area above the lanced opening looks to be a little more full.
This morning as I was changing the bandage on his butt for the lanced lump. I noticed there was a small amount of thick pus coming out of the lump, but not the lanced opening. It was coming from another tiny opening next to the cut.
Now thinking we may need to go back to ER to have that opened up so pus can drain out.
We are so worried and frustrated we just don’t know what to do.
Any advice would be much appreciated.
 

gogojojo

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Ugh. Just truly don’t know if this is a true recurrence or something else.
Local surgeon who lanced it thinks it is a recurrence, but I didn’t much like him. He was arrogant and dismissive. He disparaged the Bascom procedure saying that it was harder to repair recurrences after it. He said prefers a rhomboid flap which is very disfiguring and requires a MUCH longer recovery. No. Just no.
The surgeon who did the cleft lift in Raleigh is more experienced in treating this condition and he doesn’t think it’s a recurrence, although he said it’s not an impossibility.
We are pulling our hair out here. It has to be something - it’s been going on for months!
Worried now especially about MRSA.
 

KatieMarie

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I don’t think you can go wrong with either. They are both very well known for this procedure and are very skilled and knowledgeable. I personally went to Dr. Immerman because he was closer and had an amazing experience! He is great with difficult cases and people who have had many failed procedures!
 

gogojojo

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Thank you for responding!
His surgeon does not think it’s a recurrence, but seems frustrated and perplexed by this persistent weird wound.
In search of a highly qualified second opinion, I emailed Dr. Sternberg. I sent several clear photos and a detailed history. His office responded saying that he reviewed it and that he does not think it’s a recurrence of pilonidal disease. He did suggest possible late onset irritation/infection from suture material low on the scar.
The wound is so odd that they have ordered a CT scan in an attempt to see what’s going on before doing an exploratory surgery. Fortunately they don’t think it’s infected. Just very granulated and irritated. It feels hard when lightly pressed. It leaks serous fluid and blood intermittently and when it’s been lanced it just bleeds - no pus comes out.
I will update when this has been done. Hopefully it’s nothing serious and will be an easy fix.
I applied a Manuka honey bandage to it yesterday. Within 24 hours the swelling has reduced by over 50%!! Absolutely nothing else was helping - oral and topical antibiotics, Hibiclens wash, Anasept wound care, etc. In fact, the lump was just becoming more swollen each day. I’ve been reading a lot about medical Manuka honey and wound care. I was hoping for some positive effect, but I was kind of astounded to see such a dramatic difference in one day. It’s pretty amazing stuff.
 

KatieMarie

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That’s great that the honey is helping and also that Dr. Sternberg doesn’t think it’s a recurrence. I’ve heard great things about manuka honey as well. If it doesn’t get better and you don’t get any answers, Dr. Immerman might be willing to look at some photos as well! I hope things continue to get better and your son heals completely!
 

gogojojo

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Update...
The local colo-rectal surgeon ordered a CT scan because he was so insistent that it was a recurrence of pilonidal disease and wanted to make sure there were no deep abscesses. I had strong reservations about the scan because Dr. Wadie and Dr. Sternberg both said it did not look like a pilonidal recurrence. However, the lump has been such a problem for several months now and I was worried something scary could be going on under the surface... so despite my reservations about exposing him to the small amount of radiation, we went ahead with the scan.
The scan was normal, no abscesses and no tracking.
We have an appointment with a dermatologist because we think it might be Hidradenitis Supperativa, which Dr. Sternberg initially suggested.
I've read that this condition seems to be related to pilonidal disease. We also plan on asking the derm about permanent hair removal.
The Manuka honey (Medihioney paste) has continued to reduce the size of the lump considerably. It looks better than it has in months! The once hard tissue around the lump has softened quite a bit as well.
I will update again after the dermatology visit.
 

Myson

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Hello - I am so sorry you’ve had such a terrible time - this disease is such a drag physically and mentally - mentally as a mother. My son is going to Dr Sternberg on March 3 - I am flying to San Fran in a week and he is meeting me there. Unfortunately, they do not take my sons insurance and we have to pay out of pocket - the trip with hotels, airfare etc... is going to be astronomical however if this is a final cure it will be worth it! My son is 29 and has been battling this for 10 years - lanced twice with minimal success and always came back so it is a rather advanced case. My son lives in Seattle so we chose Dr Sternberg - also because he came up time and again in my research - I didn’t hear of Dr Immerman until after I booked the surgery and joined this forum. I am praying for optimal results and will report back. So far his office has been easy to work with and responsive.
 
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