Ongoing pain 5 years after decompression surgery

[barb21949]

I had pudendal nerve decompression surgery in December 2020 done by Dr Andrew Elkwood in NJ and a secondary minor surgery 18 months later to address ongoing pain in another area. 5 years later although I am better I am NOT pain free. I had the transglutal approach surgery. My surgery report stated they were able to decompress the nerve but also noted significant scar tissue in the surrounding areas.

I know it takes YEARS for nerves to heal and I know my pain did get better as time went by after the surgery...the first 2 years saw some progress but not as much as I had hoped...got a little better as more time went on and now 5 years later I feel I have platued and have reached my baseline.

My surgeon told me before and after the surgery they don't promise a cure but rather a 60%-80% success rate in reduction in pain. Since I have seen a reduction I guess I am considered a success. I try to look at it that way but it is hard. It did bring my daily baseline pain scale down to about 4-5 but I still feel like I am sitting on something and I still have difficulty sitting, walking or standing for long periods of time. Many different variables factor in to if that 4-5 pain scale will go up how bad or how long my pain will last. It's unpredictable in both intensity and duration.

Mornings I feel the best which is great! Which it would stay like that all day every day.
I have days where I get through it okay only to have it catch up to me later.
I have days where within an hour or so my pain is kicking in more.
I have days where my pain stays low.

The surgery helped with the stabbing pains...my pain now is more achy like having a “toothache down there” and it travels down to the ball of my foot.

My pain began in late 2015 so I had pain for 5 years before I had the surgery. After countless tests and countless doctors I was sent to Dr. Conway in New Hampshire who diagnosed me. I tried physical therapy, medications, nerve blocks for pudendal , sciatic and vascular.

Since I tried so many different things before I had the surgery I don’t know what else I could possibly do to address my ongoing pain since I know surgery is considered last resort after all else fails.

I am grateful that I am not in the excruciating daily pain I was in prior to the surgery, but it is frustrating to still be dealing with this.

[April]

Hi Barb,

I'm so sorry that your pain is continuing. We were on a similar timeline. Mine started in early 2015 (due to an intensive workout routine on a step machine), and I had surgery in Dec. 2018. I also had transgluteal (Hibner), and I had a significant reduction in pain but I do still have pain. I almost always have a low level of discomfort, but I also have flares of pain that seem to come out of nowhere. But, I manage with no regular medication---justan occasional tramadol and/or OTC pain killer. It sounds like your pain is higher on a more regular basis. What do you to do manage it? I use heat as much as possible. I had a zoom meeting with Hibner in 2022 and he thought I had muscle spasms (I don't think I do) and/or that my nerves are programmed to have pain (doesn't seem right to me, but who knows). What have doctors told you the problem was?

April

[barb21949]

Hello April and thank you for reading and replying to my post. I am glad your surgery helped with your pain.

I think I’m just one of the ones where surgery reduced the pain but didn’t elimate it. I due feel pain where the incisions were so I guess scar tissue is there?

Due to bad insurance, frustration and being tired of everything I put my mind and body through over the years … I haven’t seen pain management or specific pudendal doctors in 2 years. My primary care has been giving me gabapentin and baclofen to take for flares. My pain management self care has been lifestyle changes , limiting sitting straight up as much as possible and heat and ice.

Also depression and anxiety is an issue. I am sure centralization of pain is a factor. I do wonder after YEARS of this if I am just so hyper focused on the pain.

I haven’t been on this forum for awhile. I came on looking to see if maybe there are different things for me to try to address the ongoing discomfort. My husband saw me reading up again on pudendal nerve and asked me “haven’t you done all you could?”

Being in low pain every day although better is not fun. I am grateful but also find myself worried if I do too much it’s going to turn into a high pain day. My mornings are great! Feel almost normal. I am glad I had the surgery as I am “better” …. the pain before the surgery was unbearable but there is still this constant reminder and discomfort there every day that is distracting.

Hi Barb,

I'm so sorry that your pain is continuing. We were on a similar timeline. Mine started in early 2015 (due to an intensive workout routine on a step machine), and I had surgery in Dec. 2018. I also had transgluteal (Hibner), and I had a significant reduction in pain but I do still have pain. I almost always have a low level of discomfort, but I also have flares of pain that seem to come out of nowhere. But, I manage with no regular medication---justan occasional tramadol and/or OTC pain killer. It sounds like your pain is higher on a more regular basis. What do you to do manage it? I use heat as much as possible. I had a zoom meeting with Hibner in 2022 and he thought I had muscle spasms (I don't think I do) and/or that my nerves are programmed to have pain (doesn't seem right to me, but who knows). What have doctors told you the problem was?

April

[29Mari]

Hi Barb

If you haven't already you might try to find a pelvic floor therapist who also does dry needling. Dry needling of the perineum, lower ab, hips, and sacrum has reduced my pain levels and frequency of flares, and seems to be most helpful when I am having a bad flareup, especially if I schedule sessions on 2 or 3 consecutive days. My current PT is using that exclusively on me for the time being. So far she hasn't even done an internal exam because it is just too painful. So we're just working with the dry needling to get my pain levels down.

I also saw a pain management doctor recently who prescribed compounded low dose ketamine sublingual lozenges. These too work to some extent when I am in a bad flare. He also recommended I try ketamine infusions, which I guess are done in office via IV, as this would be a higher dose. If I try that I will post my experience here.

So these are some things that might be worth a try. It always helps to have some new tools in the box to help manage flares!

Best wishes, Mari

[barb21949]

Hello Mari and thank you for reading and replying to my post.

After I had my surgery other than taking medications and lifestyle changes, I didn’t know what I could possibly try. I have not heard of dry needling. I have reached out to a few physical therapist recently and will again go reviewing with my primary care doctor.

Before I had the surgery, my pain doctor had mentioned the potential of Botox treatments helping. But they were not covered by my insurance and were expensive but from what I’ve read recently they don’t help a lot of people. Doctors also talked to me back then about the implant, but ultimately they decided the surgery was best.

I already put my body through so much. I am afraid of being a guinea pig for some of these “treatments”. I also get weary of success rates. I think some doctors consider success even the smallest amount of reduction in pain, which I guess is good but if it doesn’t really improve your quality of life, or it’s very short term relief, I don’t think that’s “success”.

Part me think I need to still be proactive which is why I came back on here but part me things I’ve done more than enough and to just to accept where I am at with my progress. Again, I did not regret having the surgery as I do feel that it helped reduce my pain. But it still is a challenge to have pain, even if it’s low, almost every day of my life.

Currently, lifestyle changes seems to be the thing that helps me the most. Limiting my sitting and just listening to my body and knowing when to take a rest and to lay down. I don’t have bad days every day, but I still have days that can get really bad.

I only work part time and it’s close to home which really helps with not having to sit or drive too long as those tend to be triggers. Again not every day is bad but it’s hit or miss. I could sit for hours some days and have a good day and then I could sit for hours another day And it puts me in a flare. It’s the most frustrating part of all of this.

Hi Barb

If you haven't already you might try to find a pelvic floor therapist who also does dry needling. Dry needling of the perineum, lower ab, hips, and sacrum has reduced my pain levels and frequency of flares, and seems to be most helpful when I am having a bad flareup, especially if I schedule sessions on 2 or 3 consecutive days. My current PT is using that exclusively on me for the time being. So far she hasn't even done an internal exam because it is just too painful. So we're just working with the dry needling to get my pain levels down.

I also saw a pain management doctor recently who prescribed compounded low dose ketamine sublingual lozenges. These too work to some extent when I am in a bad flare. He also recommended I try ketamine infusions, which I guess are done in office via IV, as this would be a higher dose. If I try that I will post my experience here.

So these are some things that might be worth a try. It always helps to have some new tools in the box to help manage flares!

Best wishes, Mari

[Pain_Darren]

.

[Violet M]

Hi Barb,

Have you considered neuromodulation or intrathecal pain pump? I don't know if your pain is severe enough to consider those options but they do help some people significantly.

Violet

[barb21949]

Thank you, Violet for reading and responding to my post.

I haven’t tried any new treatments in two years. I came to this form years ago and it is how I found my surgeon so I came back on here to see if there was anything new worth considering trying.

The past two years my pain management has been taking gabapentin or baclofen for bad flares but I can’t take it during the day because it makes me drowsy and I can’t concentrate.

In addition to that I’ve mainly been enforcing lifestyle changes, which is working part time so I’m not sitting for too many hours a day, laying down a lot to calm down or prevent a flare and heating pads and ice.

I tried so many things before I finally had the surgery. I put my body through so much and after the surgery, I just was done with doctors and “treatments” out of frustration, depression, and finances.

The surgery reduced my pain overall and I am forever grateful however it is still a struggle to do normal things on many days because I have pain every day and although it can be low many days I have to manage myself so it doesn’t go up. It still feels like I am sitting on something every time I sit and the pain in the perineum is hard to ignore. Standing doesn’t help much as my pain travels down to my foot.

So my pain is always on my mind because I wake up every day feeling good and in one respect wanting not to do much because I don’t want it to become a high pain day but at the same time I want to be active and productive.

Hi Barb,

Have you considered neuromodulation or intrathecal pain pump? I don't know if your pain is severe enough to consider those options but they do help some people significantly.

Violet

[Pain_Darren]

.

[Violet M]

I know some people who have really significant pain relief with neuromodulation. But unfortunately, there are some risks involved with anything invasive so you always have to weigh the risk vs. the benefit. It's kind of like getting in your car to go somewhere. There are people who get killed from car accidents but we drive anyway and we don't ban cars because there are a lot of benefits to being able to go somewhere in a car.

Violet