5 Year Surgery Updated from RJR

[RJR]

Hi all,
This week marks 5 years since TG surgery, which immediately and permanently alleviated my deep burning perineal pain. The mild surface discomfort continues at a low level and is very manageable. I am able to sit up to 10 hours a day…most any hard surface is just fine…as compared to less than 1.5 hours per day pre-surgery. Standing and walking are zero pain, unlike pre-surgery. And no longer does engaging core muscles cause painful burning flares. Life feels about normal, and I continue to work full time. Surgery was a life-changing event for me. Were it not for surgery, I would likely have been on a LT disability path. I remain grateful to Dr Hibner and Dr Castellanos.

2015 brought some challenges. I experienced increases in the mild surface burning, though nowhere near pre-surgery pain, that caused me concern and resulted in a referral to Dr Jan Fritz, an interventional radiologist at Johns Hopkins. Dr Fritz did a fellowship under Dr Hollis Potter (HSS) and is very familiar with the Pudendal nerve. He used MRI guidance for precise delivery of the steroid to 2 locations that have some level of fibrosis – within 4 days my pain was knocked back to nominal. I’ve had 3 steroid injections year to date, each spaced about 3 months apart. Since 2008, I’ve had 9 Pudendal nerve blocks from 4 doctors in Houston, Phoenix, and Baltimore. Only those from Dr Fritz resulted in therapeutic benefit – he has a unique ability.

Never give up on improving - take charge, and implement a strategy that is best for you.

My best to each of you, and prayers for your continued healing and hope,
Bob

[nyt]

Glad to hear of your progress. Also, good to hear of your experience with the different doctors with the pudendal nerve blocks.

[Violet M]

Thanks for the update, Bob. It's great to hear that you are able to work and living a normal life now.

Violet

[CheshireLady]

What is surface pain? At 18 months my pain is still a six but gone from frontal, to rectal to external on my bum cheek. It feels lumpy. I will see Dr. Hibner next month. Will shots help? Is surface pain progress? Thanks for all your help. Cheshire Lady

[Violet M]

Cheshire, I can think of a couple of kinds of surface pain -- either a burning feeling if you are touched there or more of a bruised/achy feeling near the skin. Is your pain in the area of the incision? If it's in the incision you could try cold laser therapy of if you have lumpy scar tissue in the incision area you could try local steroid injections (not nerve blocks) into the scar tissue.

You could try topical ointments or patches on the skin. Lidocaine patches, salon pas, or compound ointments with lidocaine, ketamine, and gabapentin might help.

Violet

[CheshireLady]

RJR: it has been 21 months since surgery with Dr. Hibner and my pain is still 6. However it has changed from vaginal to rectal to anal to swelling and burn in bottocks cheeks. Is this what you call surface? Is it progress? In April Dr. Hibner had his radiologist give steroid shots but with no help.

Livacane on the cheeks helps. In June Dr. Weiss tried shot of Livacane and glucose to the cheeks but no help. Are your shots to the nerve or buttocks tissue? Suggestions?

Thanks so much

Cheshire Lady

[nyt]

CheshireLady, I had rectal problems before my pudendal surgery but the surgery made it worse. I had both sides done and the incision with my 2nd side has been quite painful. The couple of things that I found that decreased the pain have been:

1) My tailbone after the surgery was out of alignment. A chiropractor after about 6 months worth of seeing her once a week was finally able to get it to stay in place. That did help decrease the rectal pain.
2) I use 10 mg Valium alternating rectal then vaginal, twice a day. I insert the whole pill. It is the only thing that has ever made any difference with my rectal spasms. The rectal spasms are absolutely crippling when I get them and they can last 30 minutes to 2 hours. The Valium decreases the frequency of these episodes.
3) For my incision I have a compounded medication that is Ketamine 10%/Lidocaine 5%/Gabapentin 6%. A special compounding pharmacy makes this for me and I put the cream on both of my pudendal surgical incisions 2-3 times a day. It is the only thing that has helped with the shards of glass sensation in my incision from the 2nd surgery.

Have they tried either a pudendal block or a ganglion impar block to see if that would help? You might need to have both to determine which is the source of the pain.

[CheshireLady]

Thank you nut for your reply, Cheshire Lady

[RJR]

CheshireLady,
My surface symptoms are more of an uncomfortable sensation and not deep and intense burning like before surgery. Pain level throughout the day is mostly a 1 or 2. Each of us have a different path after surgery, but most have flares at the 6-12 month point. My flare seemed to last 10 months, and then at the 24 months began a substantial and sustained decrease to its current level. Note that the flare never gave me the deep burning pain as pre-surgery.

I personally put a lot of stock in a MRI done by someone skilled in pudendal issues. Though it is not a 100% correct in interpretation in all cases, it is an important indicator (most objective and least intrusive short of having surgery). The cause of my current pain is some fibrosis that formed post op (conformed by Potter and Fritz independently post-op). But this level of entrapment is nowhere as severe as was pre-surgery entrapment by the STL (100%). Dr Fritz via MRI-guidance is able to precisely place steroid between the nerve and the fibrosis scar giving additional and lasting relief.

Best,
Bob