Strange Pains!!!! PLEASE HELP

[djbds]

SOME IMPORTANT BACKGROUND: I am an otherwise healthy 26 year old male diagnosed with chronic pain due to bi-lateral inguinal neuralgia/neuropathy of the lower extremities. 3 years ago, I had 2 inguinal hernia operations (L and R) fail to heal properly leaving me with bad pain. The pain was random (no apparent triggers) and could best be described as burning, shooting, stabbing, radiating, crawling, tingling, etc. The treating surgeon recommended a third surgery (R inguinal neurectomy) one year to date after the herniorrhaphies...after I consulted more surgeons and had a consult with Dr. Parviz Amid with the Lichenstein Hernia Institute. They recommended the neurectomy. The procedure was performed (Feb 2006) and the treating surgeon explained the results as mixed...

Only two nerves were excised; the genital femoral and ilio-inguinal. The surgical report stated they were unable to locate the ilio-hypogastric nerve. The procedure ran on longer than expected for many reasons; 1) massive amounts of dense fibrous collagenous tissue had to be separated from the nerve branches and cord structures 3) the genital femoral nerve was not completely excised due to it being wrapped within a granuloma that was in too close of proximity to the spermatic duct and adjoining blood supply and 4) a foreign body-type granuloma and neuroma were discovered that directly corresponded with some of my severe complaint pain.

Since that surgery, my pain has increased easily 500%...and what is worse, I have an extremely high pain threshold, always have...and this pain breaks me.

All told, I have undergone 8 major surgical procedures since the original hernia...the three aforementioned, two stim trials, one periph stim implant (infected/removed), and the most recent; the second stim implant. The stim has brought my everyday pain (constant/unrelenting) down almost 40%. What the stimulator and prescriptions have NOT successfully reduced are the PAIN FLARES. Understandably, the pain flares cannot be controlled by meds (no meds can control it...including 75mcg/hr fentanyl with 3600mg/daily neurontin). Also, the stim is not meant to control flares.

I am now in a very good pain management regiment that includes prescription treatment (lyrica, methadone, wellbutrin, and Ritalin) with Dr. Snook in Sacramento. He has tried several approaches to this problem including injections and medication management.

MY DILEMMA: Over the past 6 months, Dr. Snook has seen a troubling pattern with my case. Whereas the neural pain used to affect specific areas (bi-lateral inguinal, upper/inner right thigh, and right hip); it has now rapidly grown in size.

Now the pain has spread bi-laterally in my inner/front thighs, lower abdomen, and inguinal region…also into my right hip, bi-laterally to my lower back (near the hips), and the WORST pain is back in.my genitals.

The genital pain is VERY specific...located in 4 regions; bi-laterally in the upper region of my testicles, the bottom 2 inches of my penis (opposite the head), above the bottom/base of the penis and each testicle (front of the pubic bone), and the extreme pain is underneath my penis along the structure between my thighs extending to my anus. I am also experiencing pain in my buttocks near the penis base.

There are no specific triggers to all of this pain, however, there are definitely ways in which the pain flares come on quick, strong, and last. If I engage in sex, instant pain flare. I am doing my best to keep my relationship healthy by maintaining a regular sex life; however, this increasing pain is challenging all that in the worst way. I can go without sex...that is not my main concern. My main concern is what my body is going through.

After sexual activity, I experience up to 1 hr of throbbing pain in the base of my penis followed by very strong/dull throbbing pain throughout the other complaint regions. The pain will radiate through my genitals, last up to 24 hours; stinging, shooting, and burning. Although he did not feel such causes were likely, Dr. Snook eliminated the possibility of any infection/STD through extensive testing and various anti-biotics.

I must stress this pain comes on RANDOMLY...sometimes in my sleep.

I am also experiencing a mysterious problem in association with that pain...sometimes randomly, however, almost always during and after intercourse. Up to arousal, I will feel extreme pain in the base of my penis, however, once I reach an erection, 9 times out of 10 I experience something more; an absolute COMPLETE loss of sensation in my genitals. It will run from the tip of my penis to the base and all throughout my testicles.

The numb sensation runs deep, almost as if I cannot feel major tissue/nerve sensations.

Other than that sensation, I can only feel one thing during sexual activity (or during an unrelated pain flare); superficial sensitivity. I can only describe this pain as extreme pain on the very surface of my skin...EXTREMELY painful to contact, the worst of which I feel on my scrotum. It literally feels as if my scrotum is being squeezed, twisted, pulled hard, and burned. I know this must sound far fetched, however, I cannot stress how much this sensation hurts!! That is exactly how it feels to me though. The pain is almost an allodynia-type sensation. When I am experiencing one of these new pain flares, all I have to do to set off this superficial pain is lightly touch the surface of my skin...that is it. You can imagine how hard it must be to avoid one of these pain flares during sex without touching that region...it is impossible. It might help to tell you that this numbness makes it impossible for me to ejaculate 90% of the time...I literally cannot feel the sensation enough to climax. Problem is, when I DO ejaculate that 10% of the time, I experience what I can only describe as the worst pain of my life!! Every time this pain gets worse. There have been a couple of times in the past month that I feel pain so severe in my testicles (almost as if there is swelling within), once we initiate intercourse, my body automatically makes me ejaculate...that is not normal for me at all.

I have to mention again that my doctors know this problem is not associated with infection or a prostate problem...and the clear expansion of my pain regions over the past 6 months has made Dr. Snook feel that I might be experiencing a neurological pain problem on a broader scale.

So, after sex, and after my erection subsides, the numbness would otherwise feel like a blessing (helping me to avoid any more pain), however, the numbness starts to slowly meld into that extreme dull pain I spoke about earlier...and lasts up to 24 hours.

I can write much more about the pain, although, the aforementioned explains the most severe problems I am dealing with.

I am asking desperately; please help me!! I need some explanations!! My doctors are great, they are well educated and experienced...however, they are only human and my case is challenging their knowledge in the worst way.

If you folks have any ideas what might be going on with me, PLEASE, help me out!! I know I am experiencing neuralgia/neuropathy and I know what that can entail, however, I obviously do not know everything ;)

Any little bit of info about my case is important to me...any amount of explanation will bring a little more comfort to me!! I am 26 years old...I want to lead a long and fulfilling life, however, this whole situation is stopping me in my tracks!!!

Thank you all for reading, understanding, supporting, and for your time and consideration!!

-Dave M

[jendo]

I am sOoooooooooooooo sorry you had to go through all that.  Wow I cannot imagine what you have to deal with every day.  I definitely feel for you immensely, and I am quite humbled now, as I came here to find help regarding my nerve pain that is primarily in my lower left extremity.  

I have a neuroma in my left leg that developed after ACL surgery when I was 25, two years ago.  Now, the neuroma is growing.  I have already had 2 surgeries that did not go so well and I am deathly afraid to have another one!  How do you find a good doctor?  I dont trust many of them.  I have only found 1 good one and he is retired!  

Have you had any luck since your last post?

Bless you dearly,
J  

[patttycakes1957]

I feel very emotional reading your letter.  I am now a 50 year old female that underwent what was suppose to be a routine fix of a disc in my neck!  I was 42 years old at the time, I was unable to go back to work as a flight attendant unless I did the surgery because I could not take any pain killers and still fly.  My pain was controllable with pain meds on an as needed basis at that time.  After I did the surgery, everything got worse!  I had a surgeon that said everything was alright, and I could go back to work.  However it was all I could do to hold my head up, and impossible to sit down.  I too ended up at the pain specialist, and never made it back to work!  I did look for another surgeon, which did some tests and found that three of four titanium screws that were inserted to hold a titanium plate were fractured/ broken!  They would not do anything to try and help me because they were afraid they would leave me a quadraplegic!  Almost seven years went by with me having to go see the pain specialist every month for strong pain medications!  (200mg of fentynl among other medications)  I had saw a specialist to talk about a stimulator or a pump, but it was less than five minutes and I was back out of his office with his opinion and advice that they were not very helpful.  At the end of 2006, my father got real sick and we didnt think he was going to make it, so I made a trip to Texas where he lives.  Since I was there for more than a month I was going to need pain medications.  I made an appointment and saw a doctor in Texas.  He had my doctor from home fax all my info to him including the medications that I took, and the last time that I got refills on them.  When I saw the doctor in Texas, he told me " you are on sooo much medication"  I was afraid that he was not going to prescribe for me what I had been taking!  We talked a bit about why they could not go back in and try and fix things, and other procedures that I had done with the pain specialist!  He asked me if I had done any trials for a stimulator or a pump.  I told him about the quick office visit I had with a doctor at home.  He told me that he thought that I would benefit from one of them.  He asked me how long I would be in Texas, I asked him how long I needed to stay!  To make a long story short, that was the beginning of January 07, and I stayed in Texas until the end of September.  He tried radio frequency, and a stimulator trial, neither of which helped me!  Knowing that the morphine pump has a fairly major complication, I then went ahead with a trial for the morphine pump.  I had the pump permentantly implanted in July 07.  I still do not know how much morphine 5 mc or mg of morphine is that is pumped into me on a daily basis, but I am told that it is small compared with all the fentynl that I was getting between the patches and the actiq lozengers I was taking.  I now take loratabs for break thru pain and a muscle relaxer.  Things are not perfect in my life, but I am much better off than I was before they implanted my pump.  I am told I am getting much less medication, and physically I feel 50 percent better.  I  can sit now, and most of the time can do what I want so long as I dont overdo it!  I am not sure if I have said anything here that might help you, but I want you to know that there are many of us out here of all ages!  You are not alone!  You might get some help by joining one of the many pain groups that are out there on the internet!  They share there illnesses, and what has helped them as well as what has not!  I will pray for you, do not give up until you are at a point that you have some comfort!
sincerely Patty

[GDSM]

Have you had the mesh taken out, I am going thru similar problems. I had the mesh removed by a highly qualified surgeon and it did help some, it brought my pain down from a 10 to about a 7. he told me the mesh had hardened like concrete and had wrapped arpound all the nerves. i have been researching this for some time now and found that the heavy polypro meshes are very bad and can cause all the symptoms that you are experiencing. I have had 3 operations already. so I do feel for what you are going thru. I have been working closely with the FDA and they do know of the many mesh complications. I to was in pain management and on all the same meds that you are on now. Don't get me wrong, I am still in discomfort but it is nothing like it was when the mesh was in. The stabbing hot needles thru groin pain have almost deminished and yes the testicular pain is still there but also not as bad. I will be 45 in may and I feel for you man. you can contact me at coach_jim2001***@**** if you would like to speak, I may be able to offer some suggestions to you. Best of luck...Jim