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Leg / Groin Pain Post Surgery

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User

Posted 02 Dec 2018 at 18:01

Hi, I had a robotic prostatectomy in June 2016 at age 53. All went well and, at the time of writing (Dec 2018), no detectable cancer so happy boy!

However (and here we go!).....since my op (2.5 years ago) I've suffered from severe pain in my right upper leg / groin after around 40 mins of continuous walking. The onset of the pain always follows the same pattern - tingle turning to pain in the right buttock, then the groin, then the femoral muscle - at which point I need sit sit down to 'recover'. After around 10 mins I can start walking again but for shorter periods of time. If I rest for around an hour then I get my full 40 min 'allowance' back - if that makes sense! Since my prostate op I've seen a string of neurologists, rheumatologists, cardiologists, vascular specialists, physios, and an osteopath. Lots of scans, X-rays, Ecographs, Ecodoppler, MRI's and 2 failed nerve blocks. My leg 'files' make my prostate cancer ones look pretty insignificant!

After trawling the internet over this time I have, as you can imagine, become a fully fledged medical professional - joking of course! After my op, there was an 'issue' removing my final drain catheter which resulted in a lymphocele. Personally, I've always suspected this lymphocele is the 'offender' as it shows on one of my MRI's as being in conflict with the obturator nerve that heads towards my right leg. So with my fully qualified Doctors hat on (!) - it feels to me that the repetitive motion of walking does something to the lymphocele, which does something to the nerve, then to the buttock, the groin and the femoral muscle......but hey, what do I know, I'm only the patient :-) My original Urologist isn't keen on the idea of draining the lymphocele but after 2.5 years I'm up for just about anything. It's a difficult one - he saved my life but I'm left with a debilitating issue...:-(

My question to the community: is there anyone else out there who's experienced similar issues to me. I'd love to hear your story and specifically about any success you've had sorting it out!

User

Posted 02 Jul 2021 at 15:48

Hi all - now 5 years down the line from my robotic radical prostatectomy and all's good - still undetectable PSA readings.

I've popped back onto the community to update on the issue I had with severe leg pain following my prostate op.

To cut an incredibly long 5 year story short - I've been fixed! That possibly sounds quite blasé but I assure you it isn't - it's actually been life changing. It's taken 16 specialists, endless medical appointments, physio, osteo, scans, treatments and perseverance to rid me of the excruciating (to the point of vomiting) pain that radiated into my right buttock, groin and down my right quadriceps every time I walked for more than 20 mins (it dropped from the original 40mins!).

I appreciate some people don't even have the luxury of walking 20 mins so I hope I don't sound like a wimp. As you can imagine - over the past 5 years we've had to plan lots of things around my reduced walking ability.

My prostate op left me with a lymphocele in my lower right abdomen which rubbed against (was in conflict with) the obturator nerve of my right leg every time I walked. It was the repetitive motion which caused the issue.

The lymphocele was identified on a check up MRI shortly after my op but was simply never considered to be the cause of my pain issue. I always thought it was and banged my head against many brick walls - specifically with my neurologist!

Eventually, this April 2021 my urologist performed a marsupialisation of the lymphocele with great success. It has literally been instantly life changing for me - I can't stop walking and exercising and it's something I'll never take for granted again!

My message is a simple one - never give up! :-) Simon

Edited by member 13 Apr 2022 at 06:55 | Reason: Not specified

User

Posted 02 Dec 2018 at 18:40

Is the lymphocele close to the sciatic nerve? If so, it seems like a no brainer to get it drained although it may take more than one attempt.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Jul 2021 at 00:54

Really glad that is sorted. A shame they didn't look at the most likely cause five years ago.

Dave

User

Posted 08 Jul 2023 at 15:52

A quick update on my situation. My pain in the upper left leg after walking the dog continued and didn't seem to improve so when I saw my consultant I asked about lymphoceles and she immediately booked me in for a CT scan in August.

However, a week later it wasn't improving and so I went for a blood test and it showed my fibrin levels were through the roof and so the GP arranged for a vascular consult with echo to check for thrombosis. That came back clear but the vascular consultant noted a reduced flow in the left leg query a constriction as a result of surgery.

So the CT scan has been brought forward to Monday pm so I should get the results on Wednesday and will update.

User

Posted 30 Jul 2023 at 17:59

Originally Posted by: Online Community Member

Thanks Chris

I was referring to the use of "orifice" LOL

Steve , I think my brain was reading what I thought was there. 🤣🤣.

Thanks Chris

User

Posted 30 Jul 2023 at 18:08

Originally Posted by: Online Community Member

Sorry, newbie here.

I started a new thread 2,3 days ago on this subject but cannot find it again.
What can I do to SEARCH and find it?

If you started a new thread, it wasn't posted - the usual reason for this is choosing a name for the thread that someone else has used previously. According to your orifice, you have made 2 posts - this one and a previous one just saying that you were testing whether it worked

just to reassure, what I meant to type was ‘profile’ …. any reports that I have looked in Mistermind’s orifice are libellous

Edited by member 30 Jul 2023 at 18:09 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 02 Dec 2018 at 18:40

Is the lymphocele close to the sciatic nerve? If so, it seems like a no brainer to get it drained although it may take more than one attempt.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Dec 2018 at 18:58

As someone who suffered from a slipped disc 30 years ago, I can sympathise with the pain and trouble you are experiencing. The pain would go down the back of my leg and into the foot with tingling before the agony sets in. Initially it was my left leg then some years later moved to the right leg. Currently it is behaving itself but your symptoms of walking, resting etc is almost identical.

I found this article which seems to be an exact match. Prostatectomy, lymphocele etc.

Quote "Lymphocele formation was the most common cause of hospital readmission after radical prostatectomy."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5927813/

Edited by member 02 Dec 2018 at 19:02 | Reason: Not specified

User

Posted 03 Dec 2018 at 07:01

Hi Lyn and thanks for your input! The lymphocele is nearest to the obturator nerve. The pain I experience never descends lower than the femoral muscle on the front, top of my right leg - essentially it's centered around my right buttock, groin and the femoral muscle. I've been banging on about draining the lymphocele since my op but there seems to be a 'reticence' to do it. I'm not giving up though :-)

User

Posted 03 Dec 2018 at 07:04

Hi Mr Angry and thanks very much for your input and the article - I've added it to my 'ammo' file. Sorry to hear about your own pain issues and glad things are stable!

User

Posted 02 Jul 2021 at 15:48

Hi all - now 5 years down the line from my robotic radical prostatectomy and all's good - still undetectable PSA readings.

I've popped back onto the community to update on the issue I had with severe leg pain following my prostate op.

My message is a simple one - never give up! :-) Simon

Edited by member 13 Apr 2022 at 06:55 | Reason: Not specified

User

Posted 03 Jul 2021 at 00:54

Really glad that is sorted. A shame they didn't look at the most likely cause five years ago.

Dave

User

Posted 28 Mar 2022 at 18:16

Dear Simon

I have found your post and it gives us a bit of hope for my wife's father who is going through hell after RALP.

He also cannot walk without a huge pain and went through all possible diagnosis which did not find any couse for it.

He also had a lymphocele found on a CT scan but was told by his urologist that it was too small to cause any pain. How big was yours when your pain had started?

Tom

User

Posted 28 Mar 2022 at 18:28

Hi Tom - my lymphocele was a mere 2cm at its widest point - really small but it caused one hell of a lot of pain!

I can't tell you how difficult it was to insist that I believed it was the source of my problems - all I can say is be as much of a pain in the arse as you can!!!

Sometimes the patient knows best - which doesn't always go down well with some medical professionals. To me it was pretty obvious but hey....

Best of luck to you father in law!

Simon 👍👍👍

User

Posted 28 Mar 2022 at 18:35

Thank you for prompt reply.

We will compare this with CT scan we got from the hospital.

I can only imagine what you went through. It is so difficult when not only you have to fight the pain but also your own doctor which appears to be the case for my wife's father.

User

Posted 29 Mar 2022 at 19:59

Dear Simon I hope you don't mind one more question.

Could you share the name of the doctor who helped you?

Best

Tom

User

Posted 29 Mar 2022 at 20:07

Tom Hi - happy to do that however, I live in France and all my treatment / surgeons etc are Toulouse based. If you still want the info then possibly best you contact me via my Facebook page.

Cheers / Simon 👍

User

Posted 29 Mar 2022 at 20:26

Originally Posted by: Online Community Member

Dear Simon I hope you don't mind one more question.

Could you share the name of the doctor who helped you?

Best

Tom

One of the few rules for this forum is that we are not permitted to name medical professionals. We aren't supposed to name hospitals or clinics either but everyone ignores that 😒

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Apr 2022 at 06:30

I appreciate that you posted issues that you have had. I was diagnosed with Prostate Cancer just prior to COVID lockdown in 2020. Surgery was delayed due to no room in hospitals and not wanting to have COVID spread. I finally did have prostate cancer and I came out a success. PSA levels at zero and cancer gone.

Now 2 years later I'm researching and trying not to be my 'own' doctor but I'm having pain in my left leg. Mainly down the front of my thigh and constant tingling down the leg. Feels okay when sitting but then when I get up I'm in pain, the wrong step pain, standing in one place pain/tingling. I joke that it was from my surgery but it is looking like this could be a culprit to my pain that I've had.

I had laparoscopic radical prostatectomy (LRP) and was good afterwards, but started my sports up again. Started having pain like hamstrings were torn. I had PRP process with no success. Pain felt like my back surgery in 1990 for herniated disks. This time around it is sudden pain and tingling down my leg. Standing up it is a sharp pain down the front of the left leg going down the leg as a feeling of warm water or blood flowing through the left leg.

I've had an x-ray with nothing to show. MRI shows some issues with my spinal disks but not equating to the pain that I'm having. This is the first time I've read of issues of exactly what I'm having. Oral Steroids or Advil calm the issue but do not fix. I was thinking it was herniated disks but after a year of pain and now low quality of life I'm trying to figure out who to work with or mention. I have my Primary Care Physician who has been great, My surgeon for the Prostate Cancer, and then the Orthopedic doctor who doesn't understand where my pain is coming from at this time as it is not the Lumbar disks.

Next step is epidural and then a nerve test in 4 months.

Wondering who I should pester to get some relief. This is a constant issue. Neurologist, Family Doctor, Orthopedic Doctor, Surgeon??? Any suggestions would be appreciated.

Edited by member 13 Apr 2022 at 06:31 | Reason: Not specified

User

Posted 13 Apr 2022 at 07:22

Hi Lurch and sorry to hear about the pain you've been suffering since your LRP.

Based on my own experience, my initial suggestion is simply don't give up!

In my case I kind of always knew / felt that the culprit of my 5 years of pain was the lymphocele I was left with post surgery. Apparently lymphoceles are pretty common after any kind of abdominal procedure but don't always cause any lasting issues. I guess if your MRI doesn't show any then that can't be the cause of your pain.

The pains you describe sound different to mine which were essentially caused by the repetitive movement of walking which resulted in the lymphocele rubbing against the obturator nerve leading to my right leg. In fact the lymphocele effectively 'straddled' the nerve. No amount of drugs even touched the pain I experienced - I simply couldn't get them into me in time for them to be effective. Tried 2 different nerve blocks and loads of nerve tests. My neurologist utterly dismissed the lymphocele as the cause of the pain - she knows better now - a learning experience :-)

Best of luck with your search for a solution - maybe someone else will pop along with suggestions.

User

Posted 15 Oct 2022 at 14:01

Dear Simon

I have found your post.

I had RALP on 23rd Sept, 2022 in New Delhi, India.

I also can’t live without walking and tried going for walk. After about 800 steps had unbearable pain in my left hip and groin area, which lasted for about 10 minutes and then subsidised. Was put on Pregabalin.

After a week tried walking again and had similar pain with very high intensity. Good is the same vanishes after hot water bottle massage in 15-20 minutes as if it was not there.

Have to visit my auto-Oncologist after 6 weeks.

Don’t know weather will be able to walk in future.

Mukesh

India

User

Posted 04 Jun 2023 at 19:24

Hi Simon. I have recently had a radical prostatectomy (April 2023) and have started to develop the same symptoms post op - i.e.sharp pain at the top of my leg/groin area. So about 4 weeks after surgery as I was walking, I started getting strong stabbing pain at the top of my right leg/groin area. The only way I can attempt to describe it is - it is rather like a burning sensation which starts in that area and then radiates around to my hip and then lower back. It is difficult to analyse whether it is a nerve or muscular pain. I have monitored it exactly and it is after approximately 1 mile of walking that the pain jabs start. If I then take a 5 minute break, I am able to continue before it recurs. I am also now starting to get the pain when at rest so I have taken ibuprofen as needed which seems to help. I have spoken to my consultant who at this stage does not think it has anything to do with the operation and could not be a lymphocele as he didn't do a lymph node dissection. He thinks it would be more likely that it is either orthopaedic in nature or a hernia. I have no sign of a hernia (no bulge etc..). Your symptoms seem to be very close to mine and I would rather not wait 5 years to find out a treatment!! Can anyone else out there in a similar situation please get back to me as this is now getting frustrating! Steve (UK)

User

Posted 04 Jun 2023 at 20:02

Hi Steve,

I'm 4 months since surgery and have very similar symptoms to you , Ive had utrasound scan and plenty of " you should expect some pain after surgery" GP put me on Gabapentin last week so I'll see how that goes also seeing consultant tomorrow.

Really frustrating as I'm struggling to walk more than two miles if I push it and walk four miles I'm done and can't do anything next day.

I'll update as to what consultant has to say , my wife says she coming to appointment tomorrow to push point of just how much it's impacting on what I want to do. One bright thing this is my first week of completely dry it's been pretty low but still nice to at least on top of that

All the best

Vern.

User

Posted 05 Jun 2023 at 08:25

Hi Vern

Many thanks for getting back to me. So you're a little ahead of me - very interested to hear how you get on, so do keep in touch. I was very active (5 mile walks each day and landscaping) so this is becoming a real worry. Good to hear your continence is back, mine is definitely improving but still need a pad and there is the occasional wet bed - god, the last time I had that I was 8 year old!

Best wishes

Steve

User

Posted 05 Jun 2023 at 09:33

Morning Steve,

I'll keep you updated.

For interest im 65 retired Xmas 2020 was a fruit farmer for 46 years , became office bound in last few years and gained weight went to 18 stone ok nearer 19 ! Took up walking got weight down to 14 stone 12. Before op I was walking 5 miles a day like you but now I'm down to 2 miles just not worth doing more as cause to much issue.

Talk soon.

Vern.

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