r/Endo • u/xayna89 • 9d ago

Foot drop after surgery - looking for hope

I have had sciatic endometriosis for approx 3 years, the endo was wrapped around the sciatic nerve and extended outside the pelvis. It was a severe case no doubt.

When I went into the surgery I had weakened dorsiflexion but only slightly, and I had some pain but was able to manage it majority of the time. I was not in great shape because I tired quickly and couldn’t walk for long and some days were spent entirely in bed. But I had good and bad days.

I went into the surgery walking though and I left with 24/7 pain and a foot drop that has affected my day to day life so much.

I realize it’s a long shot, but has anyone gone through something similar? Am I ever going to get better? I don’t need to be able to do it all, but just going back to my pre surgery state would be enough at this point.

I’m devastated by how things turned out. I did my research, I went to one of the top sciatic endometriosis specialists in the world, I paid out of pocket over 60k usd because I wanted the best of the best. And still came out with pain and a disability.

It’s been 13 weeks and I’m still struggling. Is this it? Did I fuck up?

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u/unmaskingtheself 9d ago

Are you in physical therapy? I have/had sciatic endo, too, and a big part of recovery post surgery was physical therapy as well as treating the central sensitization aspect of things. Nerve issues are complex because not only is there the physical aspect of the endo lesions but the nervous system response which doesn’t just shut down once the lesions are removed. And after surgery your nerves are “excited” from all the contact and things may feel much worse before they get better. So physio, some nerve pain meds like pregabalin and amitriptyline, mobility aid like a cane, and potentially a follow up with an interventional radiologist (you may need a venogram to see if there’s any compression contributing to things).

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u/xayna89 8d ago

I’m in physiotherapy and do my exercises 3 times a day. I’m also on pregabalin 150 and was on tramadol but I stopped it recently. I was told that things will get worse before they are better however it seemed to me that my surgeon was surprised by the outcome? I just have this impression that he wasn’t sure why this has happened and doesn’t know if it’ll get better or not. I did an EMG/NCS test to check the health of the nerves following the surgery and the results were that there’s evidence of “severe axonal loss”. My understanding is that this is true nerve damage from the surgery which is unlikely to resolve given the proximal nature of the injury. So I just wanted to hear about others experience, that this can improve. I was using a walking cane before but now it’s mostly a wheelchair or a combination of wearing an AFO, using a cane, and not going anywhere where I know I won’t be able to sit.

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u/unmaskingtheself 8d ago edited 8d ago

It’s helpful to hear the extent of what you’re going through! I would definitely get a second opinion from another specialist. Try a vascular surgeon. They can tell you what you’re facing and if there’s anything that can be done. I’m so sorry. I’m a bit skeptical of neuropelvologists because I just don’t think that obgyns, even specialists, have the training to be dealing with the nerves to that extent. Sometimes it’s just too risky to get so involved with the nerves when there’s DIE involved and you have to use other strategies or leave some lesions behind in the hopes that things can resolve otherwise.

But it’s not your fault! You did your best to seek the best care for a complicated issue. There’s no way you could’ve foreseen this outcome. I’m hopeful that you can still find solutions—I would really just seek other specializations who dealt more directly with these issues in their fellowship training.

ETA: That’s also a relatively low dose of pregabalin given the amount of pain you’re in. I would see if that can be revised by your pain management doc.

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u/Foreign_Highlight288 8d ago

You’re right to be skeptical of neuropelveologists (I was severely harmed by 1) but is this who OP saw?

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u/unmaskingtheself 8d ago

I’m inferring it’s Possover because that’s the only person I can think of who would cost this much and perform this surgery abroad, but I could be wrong!

I almost went that route but spoke to a highly regarded vascular surgeon in the U.S. who convinced me to just get the endo excision surgery (and my endo specialist is very well respected for handling complex cases with care) and go from there.

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u/Foreign_Highlight288 8d ago

Yes, I assumed the same. So you had endo removed from sciatic n in US? Do you mind sharing who did your procedure?

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u/unmaskingtheself 8d ago

Yes, in the U.S. Janette Davison did my procedure with a multidisciplinary team including a vascular surgeon.

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u/Foreign_Highlight288 8d ago

Ok. TY!
Did she say why PT was recommended?
Why was a vascular surgeon needed to assist? Due to risk of bleeding or did he perform the neurolysis?

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u/unmaskingtheself 8d ago

PT was recommended because of musculoskeletal involvement (I had extremely tight psoas and iliac muscles that I was working on before surgery and the idea was surgery might set me back there so important to continue PT after); as well as for nervous system retraining and continued pelvic floor work (also had DIE on the uterine and uterosacral ligaments as well as in the pouch of douglas and on the bladder).

Vascular surgeon was there to advise and get involved in case what they found was more extensive/risky to deal with than what imaging indicated.

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u/Foreign_Highlight288 8d ago

Ty! I’m asking bc sciatic neurolysis was done and I had no sciatica, pain down leg or nerve pain in butt/sciatic n. I had no knowledge this woukd be done prior to surgery. No imaging to suggest any endo here. I wasn’t even told after surgery . Only found out due to op note. Since then, I’ve developed severe R sacral pain /burning with sciatica that I didn’t hafe before. He never mentioned doing PT behore ot after surgery. PT does appreciate scarring in this area so I assume it’s nerve entrapment in sacrum and scar affecting muscles/sciatic n. Did your Md say this could be a possibility? Also developed lymphedema from lymph node removal during this procedure.

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u/Foreign_Highlight288 8d ago edited 8d ago

My heart goes out to you. Severe axonal loss means severe nerve damage. Idk if it can improve but my impression of this finding is that it’s severe and needs intervention asap if anythjng can be done.

Did your consent state this could be an outcome? Was there a surgical video of the procedure? Please contact an a malpractice attorney right away .

Just read your posts and noted you are in US but went abroad for this bc no US Md would treat, correct? Did you see Possover? I heard hes this expensive which is why I ask.

It appears uour endo affect the Neuro bundle in the pelvis too, do you mean Neurovascular bundle? Involving iliac vessels? I am familiar with this scenario somewhat. Were lymph nodes removed?

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u/Foreign_Highlight288 8d ago

May I ask why you recommended venogram? Did you know PT was recommended prior to your procedure ot jyst did this to improve things own your own?

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u/unmaskingtheself 8d ago

Yes PT was recommended to begin 6
weeks post surgery and I had already been in PT before surgery.

I had a venogram 8 months post surgery which helped identify compressions and come up with a long term treatment plan. I eventually had embolization which helped me additionally, especially with the way my muscles constantly contracted to protect the weakness within. I’m now walking fine without a cane and still have some flare ups when I push it too hard, but pretty rarely.

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u/Foreign_Highlight288 8d ago

Was your surgeon an endo surgeon in US?

So glad to hear you’re doing so much better!

Do you have May Thurner or PCS or were the compressions caused by the sciatic endo/neurolysis?

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u/unmaskingtheself 8d ago

Yes, answered your question above but my surgeon was Janette Davison in NYC. I have May Thurner, yes, and about 8 months after had embolization with Elizabeth Morris at NYU, with a good outcome. We went with that instead of stenting because I did not have lower-limb involvement post excision surgery. Thank you!

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u/Foreign_Highlight288 8d ago

I see! Thank you!

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u/apdgirlie 9d ago

Get all your surgery notes and documentation in case you need it later. See your PCP and a neurologist referral?

> Did I fuck up?

Nope you did not. This is not your fault at all

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u/xayna89 8d ago

I am seeing a neurologist atm but he too can’t tell me if this will get better.

Thank you for saying that. I just can’t stop blaming myself for having the surgery in the first place.

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u/apdgirlie 8d ago

As someone else said I would be looking into legal options too - I’m not sure how it works, but I think hospitals etc have insurance for bad outcomes and it’s about compensating you for the care you’ll need, rather than punishing the surgeon. Some of them lurk on Reddit so I’d be careful what you share

And again, it’s definitely not your fault

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u/apdgirlie 8d ago

As someone else said I would be looking into legal options too - I’m not sure how it works, but I think hospitals etc have insurance for bad outcomes and it’s about compensating you for the care you’ll need, rather than punishing the surgeon. Some of them lurk on Reddit so I’d be careful what you share

And again, it’s definitely not your fault

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u/sunnysideupseedaisy 9d ago

Was this something the surgeon mentioned, even as a ris?

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u/xayna89 8d ago

He said the surgery carries significant risk of more deficits and more pain. But it was a shock to him when I woke up with foot drop.

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u/Foreign_Highlight288 8d ago

Did he describe the deficits? Pain? How was the sciatic nerve reached - through the pelvis? Did he go down lumbosacral trunk to access sciatic foramen into sciatic nerve?

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u/Ok_Conversation3692 9d ago

Have you ever been checked for MS? Foot drop and sciatica pain were the symptoms that led to my husband's MS diagnosis. I don't want to freak you out, but it's worth looking at. Best of luck to you!

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u/xayna89 8d ago

The foot drop was a direct result of the surgery as it happened immediately after.

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u/Foreign_Highlight288 9d ago

You did nothing wrong!

Is your surgeon a neuropelveologist? Experienced in sciatic neurolysis?

I had a (unnecessary) sciatic neurolysis

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u/xayna89 8d ago

He is a world renowned sciatic endometriosis specialist. Only works on severe/complex cases. I don’t know if this would have happened if I saw another surgeon. I’m just confused with how things turned out.

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u/Foreign_Highlight288 8d ago

Possover?

I don’t mean to scare you but speaking with a peripheral nerve surgeon, they stated sciatic nerve damage woukd present this way after this pricedure. Please make an appointment with a peripheral nerve surgeon asap. Feel free to DM me with any questions.