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Need diagnostic insights

Postby posertiermadness » 04 May 2022, 20:15

Any insights…


-Tried Botox (CRS), made worse.
-Colonoscopy clear. MRI indicated small fistula (CRS dismissed as artefact and not relevant)
-Had fissurotomy, did nothing (General surgeon, not my CRS and CRS was annoyed the general overstepped while he was away).
-Tried Botox (CRS), helped a bit.
-Was going to have 2nd Botox, but name came up for CRS to do exploratory.
-Follow-up, told looks like healing and nothing more can do. Said could see no fistula and dismissively said my butt is better off then his.
-I got annoyed and told him he rather than using confirmatory bias he should get diagnostically curious as to why it is not healed and why it still hurts.
-He is referring me to a colleague for a 2nd opinion.

1. Has anyone else had a fissure that looks like it’s healing, but never heals underneath?
2. Feels like it tears from just bending over to put on shoes, moving quickly, being bumped?
3. Feels better most days upon waking in the morning, not too bad after a BM, and pain progresses throughout the day until evening (sleep and start over)
3. Gets a little better over the course of 3-5 days and then progressively worse again for 2-3 days (round and round)?
4. Get a pins and needles feeling around area that seems associated with a partly closed, partly open fissure…like a seething paper cut. Feels very nerves.
5. When starts to feel quite a bit better occasionally for a few days, I will start to get a slight sting about an inch higher up.

Despite this supposedly “closed” fissure, yesterday I tried some oil I’d ordered awhile ago that never helped and OMG it hurt so bad I could not sleep like I’d put in on an open cut or on an open nerve (can’t be a neuroma or the CRS would have seen it).

I’m in Canada, where our docs tend to be diagnostically complacent due to limited funding and patient overload.
posertiermadness
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Re: Need diagnostic insights

Postby Rich44 » 05 May 2022, 11:32

posertiermadness wrote:Any insights…


-Tried Botox (CRS), made worse.
-Colonoscopy clear. MRI indicated small fistula (CRS dismissed as artefact and not relevant)
-Had fissurotomy, did nothing (General surgeon, not my CRS and CRS was annoyed the general overstepped while he was away).
-Tried Botox (CRS), helped a bit.
-Was going to have 2nd Botox, but name came up for CRS to do exploratory.
-Follow-up, told looks like healing and nothing more can do. Said could see no fistula and dismissively said my butt is better off then his.
-I got annoyed and told him he rather than using confirmatory bias he should get diagnostically curious as to why it is not healed and why it still hurts.
-He is referring me to a colleague for a 2nd opinion.

1. Has anyone else had a fissure that looks like it’s healing, but never heals underneath?
I never looked at my fissure.
posertiermadness wrote:2. Feels like it tears from just bending over to put on shoes, moving quickly, being bumped?
I never had that feeling.
posertiermadness wrote:3. Feels better most days upon waking in the morning, not too bad after a BM, and pain progresses throughout the day until evening (sleep and start over)
I could have great days and horrific days. Mine seemed to be at their worse during or after a morning BM. Many times I would have a second or third BM not long afterwards that was excruciating.
posertiermadness wrote:4. Gets a little better over the course of 3-5 days and then progressively worse again for 2-3 days (round and round)?
Absolutely.
posertiermadness wrote:
5. Get a pins and needles feeling around area that seems associated with a partly closed, partly open fissure…like a seething paper cut. Feels very nerves.
I don't know about that but we know the nerve endings are super sensitive in the rectum.
posertiermadness wrote:
6. When starts to feel quite a bit better occasionally for a few days, I will start to get a slight sting about an inch higher up.
I don't recall having that.

posertiermadness wrote:I’m in Canada, where our docs tend to be diagnostically complacent due to limited funding and patient overload.
Which is a shame. I have had this discussion with another Canadian on this board. She is on a 12-18 month wait for her LIS and even then may or may not have a great CRS to do it. No such issue in the US. I had mine done within weeks once we decided to move forward and went to a great CRS. Have you considered coming down to the US for this?
Chronic Fissure June 2014 - October 2020
Botox, skin tag removed - February 2015
Levator Ani September 2014 - February 2016 (caused by stress - left my job, cured!)
Lateral Internal Sphincterectomy, skin tags removed - October 2020
Fissure 100% healed!
Rich44
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Re: Need diagnostic insights

Postby posertiermadness » 05 May 2022, 11:50

@Rich44 I was hoping you'd reply given your experience. Thanks. The tearing with movements and tract-like locations does make me think there could be a small non-abscess fistula, with body movement re-re-re-tearing between the internal and external sphincters...Separate connected muscles, tearing of the connective tissue. Don't know why the MRI is just being dismissed. What was the point of it then?
While I appreciate a public health care system, there is no incentive to take extra steps if the person is not on the brink of death. "Huh, you're in pain and I don't know what it is within 2 min of seeing you, not reading your chart, and just glancing at tests while in the room. That's too bad. I think I'll have a ham sandwich for lunch."
Yes, I will travel south if this next CRS is as complacent. I did contact the Mayo in 2020, but covid and they said I'd need a costly EUA (which I've had). Really, I need ultrasound to see if there is a small unhealed tear under the fissure scarring or intersphincteric something. Then some kind of injection to aid healing or stop the tearing (e.g., bio glue).
You have been on here enough and heard so many stories...Any US places you'd recommend? Mayo is supposed to be good at getting to the bottom diagnostically (pun intended).
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Re: Need diagnostic insights

Postby Rich44 » 05 May 2022, 12:01

posertiermadness wrote:@Rich44 I was hoping you'd reply given your experience. Thanks. The tearing with movements and tract-like locations does make me think there could be a small non-abscess fistula, with body movement re-re-re-tearing between the internal and external sphincters...Separate connected muscles, tearing of the connective tissue. Don't know why the MRI is just being dismissed. What was the point of it then?
While I appreciate a public health care system, there is no incentive to take extra steps if the person is not on the brink of death. "Huh, you're in pain and I don't know what it is within 2 min of seeing you, not reading your chart, and just glancing at tests while in the room. That's too bad. I think I'll have a ham sandwich for lunch."
Yes, I will travel south if this next CRS is as complacent. I did contact the Mayo in 2020, but covid and they said I'd need a costly EUA (which I've had). Really, I need ultrasound to see if there is a small unhealed tear under the fissure scarring or intersphincteric something. Then some kind of injection to aid healing or stop the tearing (e.g., bio glue).
You have been on here enough and heard so many stories...Any US places you'd recommend? Mayo is supposed to be good at getting to the bottom diagnostically (pun intended).
Well Mayo is the number one hospital for digestive disorders in the country as they see the rarest things all the time. My CRS was Dr. John Park at Advocate Lutheran General Hospital in Park Ridge, IL. He is the head of the department and has a private office nearby in Park Ridge at LM Prasad /Chicago Colorectal. 847-759-1110. Give them a call if you have questions. Otherwise I doubt you can do better than Mayo Clinic especially if you have some additional complications. I guess the only big factor for you would be paying for all of it. Keep in mind, the amount is insignificant to being back to normal so ask yourself, "If you could make this magically go away right now, how much would you pay?"
Chronic Fissure June 2014 - October 2020
Botox, skin tag removed - February 2015
Levator Ani September 2014 - February 2016 (caused by stress - left my job, cured!)
Lateral Internal Sphincterectomy, skin tags removed - October 2020
Fissure 100% healed!
Rich44
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Re: Need diagnostic insights

Postby posertiermadness » 05 May 2022, 12:06

Rich44 wrote:
posertiermadness wrote:@Rich4 the amount is insignificant to being back to normal so ask yourself, "If you could make this magically go away right now, how much would you pay?"


Indeed, no more pain and I could easily earn back the $20-50k it might cost. The amount of time consumed by pain is incredible.
posertiermadness
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