Any neurosurgeons for this trapped nerve in groin

[hank3.14]

Along with PN/PNE, I also have one or maybe two trapped sensory/cutaneous/peripheral nerve(s) in one groin. This medical problem has been baffling, has been going on for more than 3.5 years, and only worsened over the years. A number of medical problems have been ruled out and two musculoskeletal ultrasound expert radiologists studied the groin and found an inflamed nerve. But one of them thought it was the ilioinguinal nerve and the other one said the problem was with the genitofemoral nerve. Recently I was offered **experimental** microwave ablation of the nerves (two would have to be destroyed since they're so close together) but the results of the injections done as tests for me - testing done before microwave ablation - caused another radiologist to tell me I'm no longer a candidate for experimental microwave ablation. Therefore, the only thing left for me is to find some neurosurgeon who does open surgery to destroy such nerves. You see, I'm in constant physical pain which is only lowered a little by high doses of OTC ibuprofen (800 mg taken once or twice and rarely 3 times a day). I'm scared of a heart attack or stroke caused by ibuprofen so I take 'drug holidays', gradually worsen and am forced to take the ibuprofen again.

Do any of you know where I'd find a neurosurgeon who does open surgery to destroy this kind of cutaneous/sensory/peripheral nerve? Is there some neurosurgery forum that you'd recommend to me? After nerve destruction there's numbness but I'd take that compared to the torturing by the trapped one or possibly two nerves. In the past I read here that some PN/PNE patients went to Baltimore neurosurgeon A. Lee Dellon, MD but they reported here that he made them worse so I'm somewhat concerned about going to Baltimore for open surgery for the groin. At his website, Dellon has a useful illustration of groin and hip cutaneous nerves. The red zone in one of these illustrations is for the iliohypogastric nerve. My physical pain occurs precisely in that red zone so I'm wondering if the iliohypogastric nerve is also or only causing all my groin physical pain.

Any help from members here would be greatly appreciated.

[Ray P.]

ibuprofen DOES NOT USUALLY WORK ON NERVE PAIN????????
WHAT DO DOCTORS SAY ABOUT THAT?

RAY

[hank3.14]

ibuprofen DOES NOT USUALLY WORK ON NERVE PAIN????????
WHAT DO DOCTORS SAY ABOUT THAT?

RAY

Ray, I've been diagnosed by two top radiologists (both using ultrasound and both experts in musculoskeletal ultrasound diagnosis) as having neuritis in the ilioinguinal nerve (eminent radiologist #1) in the painful groin and in the genitofemoral nerve (very good radiologist #2 who had studied with #1) in the painful groin-- #1 later wrote to me saying that both those nerves are so close together in the inguinal canal that it's hard to tell one from the other but I know that one of them is outside the spermatic cord and the other one is inside the spermatic cord which is inside the inguinal canal. Therefore, that neuritis is inflammation of a nerve and therefore
heavy doses of ibuprofen usually, but not always for some reason, lowers the physical pain by a small degree. But two injections by radiologists done by the genitofemoral nerve didn't benefit me at all. Also, radiologist #1 found some flaw in my hip. In his report, he wrote: "A small 3 mm ossification fragment at the anterior aspect of the left acetabulum might relate to prior fracture or could represent ossification within an unstable labrum. Intact left adductor tendons and muscles." He was silent during his entire ultrasound study of my painful side. Had he said, during his study, that he found this flaw in my hip, I would have told him that while bicycling, I've been hit on my painful side in two different years, both times hit by dangerous drivers who got in trouble with the law for hitting me. The more recent collision (May 2008) caused all the ligaments in my left knee to be torn and my left femur to be cracked but not offset in any direction. A city ambulance had to take me from the accident site to the hospital. After both of these collisions, I healed and resumed longer distance bicycling with no physical problems and with no physical pain. I still don't know if the two accidents have anything to do with the flaw found by radiologist #1. Anyway, all my hip medical records were requested by the best and famous hip ortho in my
region of the US. [This ortho treats top sports players.] The ortho won't let a person get an appointment with him 'til he reviews all medical records on the hip. Early this year, he had his helper call me to say that from his review and study of all my records dealing with the left hip, the ortho says I don't have a hip problem, therefore I can't see him. [Another independent ortho in my city took X-rays of my left hip and said the X-rays looked normal. He also reviewed a new one done earlier this year and this one was also normal.] MRI scans also show nothing abnormal.

But over 3 years ago I began to note that when I was standing and raised my left leg upward, I had a terrible, painful sensation as if a "ball" were in my left front ab (close to the painful groin) and that "ball" was being painfully squeezed by the upper leg raising up. As this medical problem evolved and worsened, a bad physical burning pain set in as I raised up my left leg which always continues to happen when I'm standing and raising my left foot to put on and tie a shoe and also when I get into my car which is higher off the ground so I have to lift my left leg upward to bring it into the car and I always have this horrible burning physical pain in the upper left groin when
I do this. And in bed, I have a strong, sudden, sharper type physical pain only as I roll from one side to another-- as soon as I stop moving the pain drops to faint or very low. [For an entire year, it was impossible to rest/sleep on my favored left side because the left side/left groin physical pain would be low when first going to my left side but in 1 to 2 minutes would soar to pain level 9+ which forced me to my back or to my unfavored right side for rest/sleep. After that full year, something about this medical problem changed and I was able to rest on my favored left side but when I got out of bed I'd have a moderate level of constant burning pain in the left groin. Walking
around for say 10 minutes made that burning pain end. I know that the burning pain is probably or surely neuropathic but is absent (or very low) when just standing as I do all day long every day.] Just standing and walking around doesn't cause the awful burning pain even though the pain level is probably very low. In the past, there wasn't the burning pain when going up stairs but now there is so I use elevators to go up.

In the past with this problem I had a very strange thing happen always following my formerly favored long walks. Early in this problem I'd go on my long walk made at a fast clip. One to two days after completing the walk, the constant, DULL physical pain in the left groin or left
side would begin climbing and would reach a peak 1 to 2 weeks after completing the walk. It would then take 1 week or more for the physical pain to go down. [For quite some time during the first 2.5 yrs. of this problem I was unable to take NSAIDs due to my stomach. So nothing was taken for the pain when this post-walking problem started. An MD finally told me about the drug misoprostol which usually protects my stomach so that I can take the heavy doses of ibuprofen.]
Over time, the time gap between the end of a walk and the start of the building physical pain became shorter and shorter. So it was 1 to 2 days early in this problem, then some hours after completion of a walk, to 1 to 2 hours after ending a long walk, to only 1 block of walking which made the pain soar from low to pain level 9+ in that 1 block. I gave up on long walks due to this and still remain scared by longer walking.

And on top of all this, there's often a terrible itch where the left half of the scrotum meets the pelvis. This awful, strong itch in that area or else horrible sharp, knife-like stabbing pains occur in the small lower left front pelvis following a shower so I became scared of showering. The simple washing movements of skin and tissues upset the cutaneous nerves in those areas. A derm examined me, saw no evidence of yeast infection and said the itch was due to nerve damage. In the past before this problem began, I did have a yeast infection on the other side and I discovered in this left groin problem that the topical ketoconazole did lower the itch. I told the
derm what the ketoconazole did and he said all topical yeast drugs are also anti-inflammatory so that's more evidence of this problem being neuritis. I'm just scared of taking so much ibuprofen which is known to cause heart attack and stroke. That's why I trying to find some neurosurgeon who can destroy one or more cutaneous/sensory groin nerves. My big rhetorical questions though are these: Will groin nerve destruction somehow end the inflammation or will I still have to take ibuprofen even if the pain is absent? Destruction of nerves will cause numbness but how will I detect inflammation if it still exists?

I forgot to mention that last Dec. I had 3 hernia surgeries in 1 session: left side symptomatic pantaloon hernia surgery (which was my 1st left side surgery in life), belly button hernia surgery, and right side direct or indirect non-symptomatic hernia surgery. Because the anesthesiologist had rammed a breathing tube down my throat, I awoke from the surgeries with a godawful sore throat and my uvula was battered by the tube. An MD gave me a 3 day supply of prednisone for the throat damage. I took the prednisone on 3 consecutive days. Some time in Dec. ALL of my left side pain went away-- I felt perfect but didn't record if all this physical pain was absent on only 1 day or maybe on 2 consecutive days or maybe even on 3 consecutive days. MDs told me that it was the prednisone that made all the physical pain end. It wasn't the narcotic that I was given for the 3 hernia surgeries that made all the left side physical pain end. Therefore, this absence of physical pain due to the prednisone is more evidence that there's some bad inflammation in my left groin.

[Violet M]

Hank, have you been evaluated by a physical therapist yet -- someone who can assess the pelvic floor and other pelvic structures? Just something to consider. The PT I saw seemed to know more about this than the orthopedic surgeon I saw before I had a proper diagnosis.

Violet

[hank3.14]

Hank, have you been evaluated by a physical therapist yet -- someone who can assess the pelvic floor and other pelvic structures? Just something to consider. The PT I saw seemed to know more about this than the orthopedic surgeon I saw before I had a proper diagnosis.

Violet

Violet, yes I've been checked by two p. t.s whom I was told are expert in pelvic floor troubles. But neither of them was good for me.

Last month, I did one of my infrequent searches for answers so that I can help an MD understand this groin nerve problem and then hope the MD can help me. Last month, I found out about ilioinguinal neuropathy which I read is rare and which seems highly similar to if not exactly the same as what I experience. I've been trying to find an MD who can evaluate me for this and then treat it (if I do get the diagnosis) with pulsed radiofrequency (PRF) which I read is quite effective and successful in ending the awful pain from ilioinguinal neuropathy. It's just difficult to find out who knows about this neurological problem and where it's treated with PRF.

[janetm2]

Hank,
You may try searching in this forum in the right top box for ilioinguinal to see if anyone has a post with some doctor or lead.
Janet

[hank3.14]

Hank,
You may try searching in this forum in the right top box for ilioinguinal to see if anyone has a post with some doctor or lead.
Janet

Thanks Janet. Yes, I did a search here and found out about Jason Attaman, DO, of Seattle. He may treat this and he does do PRF (pulsed radiofrequency) which I know, sadly, is NOT covered by any insurance in the US.

Some good news: Today I got a phone call from a medical school in my state. The woman who called me told me about an anesthesiologist who uses PRF for chronic physical pain problems. I hope I can see her in time and have proper medical treatment for this nerve-caused physical suffering and misery.

Though there's been indifference, neglect, obstacles, roadblocks and dead-ends that I encounter, I keep getting hope renewed now and then.

[janetm2]

Hank,
Good luck it will be great if there is someone nearby and better can help!
Janet

[acw]

Hi Hank, what part of the country are you in, and are you willing to travel? I had cryoablation (freezing) of the ilioinguinal nerve done several years ago at a pain clinic in Minnesota.

[hank3.14]

Hi Hank, what part of the country are you in, and are you willing to travel? I had cryoablation (freezing) of the ilioinguinal nerve done several years ago at a pain clinic in Minnesota.

Hello acw,

I'm in Wisconsin, in Madison. Today I met for the 3rd time with the neurosurgeon in the Madison VA. The meeting was extremely brief but he's sending me to the Milwaukee VA where an anesthesiologist does PRF for sensory nerve entrapments. That anesthesiologist also works at the Medical College of Wisconsin, in Milwaukee. [Earlier today a woman from the Medical College called me to tell me about the anesthesiologist.]

In the 2nd meeting with the neurosurgeon he told me about experimental microwave ablation of sensory nerves-- it was being done at UW in Madison. I asked him what the success rate for that is and he said "Microwave ablation has a success rate of 50%" which I thought was poor. He went on to say that if one benefits from microwave ablation, then there's the chance of gaining as much as a 50% reduction in the physical pain. But because one or two radiologists thought I didn't show a certain good response following ultrasound-guided injections done, in two different months, by first the ilioinguinal nerve and then, two months later, by the genitofemoral nerve, I was told by one of the radiologists that I'm no longer a candidate for microwave ablation. Anyway, there was so little discussion and never any mention of cryoablation and no one seemed sure which groin sensory nerve was causing my troubles that I never even knew about cryoablation for one of the nerves. But there's good, sound information and findings that it's highly likely that my ilioinguinal nerve is entrapped and has neuritis.

Were you offered PRF or did some MD just say that cryoablation is the way to go in your case? I suppose some sort of freezing probe had to be inserted in you to freeze the nerve. Was ultrasound used for guidance or was the nerve found by use of a fluoroscope? Was the surgery only a slight cutting to put in the probe? Is there now just numbness after the cryoablation?

I read that PRF is successful for ilioinguinal neuropathy but that it might have to be repeated in time once the physical pain returns. You probably had only one treatment which worked for you. Yes?