Pain Diary

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    • #10733
      21tomlinson
      Member

      I’m a 33 year old male. In January of 2015, I begin suffering chronic testicular pain as a result of a previous epididymal infection. In April of 2015, I underwent a spermatic cord stripping surgery in an attempt to treat the problem. This surgery diminished the testicular pain, but left me with something far worse: chronic burning pain on my scrotal skin. I have suffered with this everyday for the past year, and it has taken my entire life away. I underwent a laparoscopic genitofemoral neurectomy in February and an orchiectomy in March of this year to year to try and stop the pain, but for some reason I continue to suffer. I have decided to begin writing a pain diary in this thread. It may help me to get my thoughts out and reduce how lonely I feel everyday. Here goes. Hope everyone doesn’t mind.

      Thursday, March 31

      Woke up 9:00am this morning. Today was an off-day from work, thankfully. I have somehow managed to keep my job as a financial counselor so far, due to my employer being extremely lenient and understanding while I have been going through this. I am not sure how much longer this will last, though. I felt OK upon waking up, and decided to sit in a hot bath. Within a few minutes, the burning on my scrotal skin started, as it does every single day. I took 800mg Gabapentin and had some coffee. The Gabapentin doesn’t help much, but I take 2400mg daily anyway.

      Went to the gym around 1pm. In spite of the pain, i try and remain somewhat active. Unfortunately i didnt get much working out done, as the scrotal skin pain was particularly overwhelming today. I took 10mg of percocet upon leaving the gym. Within about 20 minutes, the pain had lessened to a bearable level.

      Went to Mcdonalds around 9:00pm. I used to love eating healthy, but I don’t care much about that these days. Took another 10mg of percocet prior to eating. This controlled the pain and I was able to have a nice meal.

      Heading home now, will take a shower and try to relax and watch some TV. These days I’m able to sleep pretty well as long as I take another 10mg of percocet prior to bed. Yes, I know it seems I am hooked on pain killers. I promise I am not. I could stop at any time, if I could just get whatever is causing this horrible pain fixed.

      Hopefully I can relax a bit tonight. Tomorrow will be another struggle. Will write more then.

      Goodnight, diary.

    • #13517
      21tomlinson
      Member

      Pain Diary

      Fri, April 1

      Woke up at 10:00 am today. Today was another off-day from work. Had an 11:00 am appointment with an endocrinologist, which I scheduled because of the orchiectomy I underwent. The burning sensation in my scrotal area started within about 10 minutes of waking up, and was with me during the whole 30-minute car ride to the endocrinologist. The endocrinologist said that she wants to test my levels to see if I may need testosterone. I go in for that test tomorrow morning.

      Managed to go to the gym around 1:00pm again. The scrotal pain was not as intense during my gym visit today, so I managed to get a decent back workout. I tried doing some jogging on the treadmill after lifting weights, but this caused the scrotal burning to intensify, so I only managed about 4 minutes before having to stop. I miss the days prior to my surgical injury when I would do 45 minutes easily.

      Went to my office at work for a bit after the gym. Tried to get some things done, but as sitting causes the pain in my scrotum to worsen, I couldn’t really concentrate.

      Leaving the office, I started to get an intense headache and hot feeling in my head. I get quite often ever since the surgery. Why do I get this? I can’t figure out why a headache would be connected to nerve damage in the groin.

      Went to eat at an italian restaurant with my dad around 6:30. I took 10 mg of percocet prior to going to dinner with him so that I could relax and be without pain. The headache was present but the scrotal pain wasn’t bad.
      We had a nice meal and conversation. I feel so bad for him. He wants so badly for me to get better, but feels helpless.
      He doesn’t deserve to see me like this. He lost his wife of 44 years back in 2012, and now has had to watch me deteriorate physically and emotionally since I sustained this surgical injury. It’s not fair.

      It’s 12:40 am right now. I hate being in this prison of pain. I try to have hope that one day I’ll have a surgery that can fix this. But that day seems so far away. Going to try to sleep now.

      Goodnight diary.

    • #13518
      21tomlinson
      Member

      Pain Diary

      Saturday, April 2

      Today was one of the milder days as far as pain. Woke up at 9:30am and went to have my blood test to check my T levels. Afterwards, went to my office for a bit and managed to get some work done. Went to the gym around 12:30pm and managed to have a decent arm workout. The scrotal burning began about 20 minutes into my workout, but I pushed through it. By the end of the day, my headache had returned and the scrotal burning had returned. I took another 10 mg of percocet, and this eliminated the burning within about 20 minutes.

      One thing that gives me hope: When I wake up in the morning, I usually feel pain-free. But within a half hour or so of getting up, the pain starts. This tells me that there must be something wrong with one of the nerves that is firing off with activity. But which nerve? Can it be fixed? I am trying to hold out hope that it can be.

      It’s 1:30 am. Took another 10 mg of percocet about a half hour ago. Eyes are getting heavy.

      Goodnight, diary.

    • #13519
      drtowfigh
      Keymaster

      Pain Diary

      Not sure if it will help, but may want to consider investing in a TENS unit and play around with it.

    • #13521
      21tomlinson
      Member

      Pain Diary

      Monday, April 4

      I missed my diary entry yesterday. I fell asleep while in the process of writing. Yesterday was bearable, but today was pure agony from start to finish. Didn’t get much work done and was unable to make it to the gym. Aggravating things is stress from the fact that I have a new boss who has zeroed in on my decreased production. My new boss is unsympathetic to the pain I am in and appears ready to replace me. I think that would be the final nail in my coffin.

      How the hell did this happen to me? How I wish I could go back in time and not allow that urologist to do this to me. I had a life and it’s been taken away.

      I feel I may be close to ending things. I want so desperately to live, but I can’t live in brutal agony. Can’t go much further. Struggling to find the strength to fight further.

      Good night, diary.

    • #13527
      jgens99218
      Member

      Pain Diary

      21Tom

      Sorry you have to suffer like this.

      Not that you have not tried this already but apply ice on the burning area it should help temporarily and does not cost anything and wont harm you. Also I have had really good luck with Aspercreme with Lidocaine, which essentially is straight Lidocaine (numbing agent). try to keep as positive as possible as your mental state will influence how you perceive the pain.

      Time will help you it is just long and difficult. Keep busy, Hang in there. You are not alone.

      JG

    • #13528
      drtowfigh
      Keymaster

      Pain Diary

      I’m happy you have found this site as a means of expressing yourself. There are many patients who can relate. I hope this process is helping you as well as others.

      I also urge that you seek support with Chronic Pain support groups that are available both in communities and online. And I hope you have a compassionate primary physician who can help guide you through this process.

    • #13530
      21tomlinson
      Member

      Pain Diary

      Wednesday, April 6

      Thank you to jgens and Dr. Towfigh for your compassion.

      Woke up at 9:00am this morning and went to work. The pain was immediately present upon waking, which usually does not happen. I tried my best to be productive, but it’s very difficult. My new boss seems to think I’m faking my discomfort, which is disheartening because I’m suffering beyond words and was such a tireless worker before this happened to me. It is easy to look at me and think that everything is OK. Wasn’t able to make it to the gym today unfortunately.

      I am trying to have hope, but I don’t understand why I have to wait so long to get help. Surgery is the only thing that will fix this, but why can’t I have it now? Every day I suffer with this is a lost day of life. Tomorrow will be lost, as will the next day, as will the next day, and the day after that. Why isn’t my suffering a priority to anyone? After I am gone, people will say “We shoud have acted sooner.”

      Goodnight, diary.

    • #13531
      21tomlinson
      Member

      Pain Diary

      P.S. Dr. Towfigh,

      Thank you for your advice regarding chronic pain forums. I have delved into this, however the reason I have chosen this forum to express my thoughts is because in my experience, my problem is vastly uncommon and no one understands it on standard chronic pain forums. Here, I am among people who understand this particular issue. I know that you understand it as well as anyone.

      Dr. Chen is a great guy and I can tell you are a great person as well even though I haven’t met you. I wish I could pick up the phone and talk to one of you each time I am feeling desperate. It is hard to keep fighting right now but I am trying.

    • #13532
      skaadland
      Member

      Pain Diary

      I’m reading your pain log and hope that you are finding help and relief….did you have mesh?
      You are not alone in hernia repair issues and, although a stranger to you, I am not a stranger to pain; I’ve lost five years of my life, but I will fight to get help. If you need an “ear” or “eye” [email protected] and know you must fight…..I’ve been pummeled to the ground by doctors; hopes up then knocked down, but I am worth the fight. I’m very, very, cautious of doctors I see….when the number 1 hospital in the nation has doctors who get away with what happened to me, it makes one very leery of the medical world, but, there are good ones and keep fighting.

    • #13536
      InPain
      Member

      Pain Diary

      Dear 21tomlinson,
      Thank you for sharing the pain and agony you struggle with every day, and I think many of us can relate. I’m in the same situation as you are, and I know the feeling when you just want to give up, because nobody in the health system seems to care or understand how severe this pain really is. I’m not able to work or do anything now, and the pain has been so bad the last two weeks that I have been close to calling the hospital and ask them to either help me with the pain, or have the decency to just euthanize me.. Everyday is a struggle.. Most days i’m also waking up almost pain free. On good days I can walk around for 3-4 hours with little pain, and on bad days I can’t even wear underwear for five minutes before the pain is out of control.

      The pain we are suffering now is not going to last forever. We are both going to find the right doctor who really cares, and don’t quit searching for the source and the solution for this pain. You probably have checked out if pulsed radiofrequency can help you? I’m not sure if botox is possible in that area, but I know they inject it into the bladder muscle, for pain after hernia repair and abdominal cutaneous nerve entrapment syndrome with success. In a couple of years, it will come a new medicine that is very effective against nerve pain. This medicine already exist today, but is only used against cancer. http://www.ncbi.nlm.nih.gov/pubmed/26475804

      Keep on fighting and this pain eventually will just be one bad memory.

    • #13537
      21tomlinson
      Member

      Pain Diary

      Thursday, April 7 2016

      Woke up at 8:00 am today. That’s early for me these days. Usually I try to sleep in as long as possible, because if I’m not awake, I can’t be in pain.

      Got to the office around 9:00 am. It’s hard walking around and trying to be normal with everyone in the office, but I do my best. I did manage to go to the gym on my lunch break. Had a decent back workout but was really hurting with the scrotal pain afterwards.

      My feelings changed a lot between hopeful and desperation today. I still have a glimmer of hope that I can be out of this horrific pain one day, and I get excited when I think about that. But I get scared when I think about the fact that I may never get out. I may always have to live with burning pain in my scrotum because of what was done to me. What will I do then? I think I know what I will do, what I will HAVE to do, and that scares me because I don’t want to do that. I shouldn’t have to.

      Took 10 mg about 30 minutes ago. Eyes are getting heavy again. I should get up right now and take a shower, but I think I may just fall asleep instead. Thank God I am still somehow able to sleep despite the pain. Sleep is the only time I can be at peace.

      Goodnight, diary.

    • #13560
      jgens99218
      Member

      Pain Diary

      21 Tom

      What surgeon performed your orchiectomy? If it was not Dr. Chen did he advise for/against this procedure? Why would you have not had Dr. Chen perform this procedure as well and stay with the same surgeon?

      When you go to the gym what type of workouts are you doing. Since the workouts seems to make the pain worse, I was curious as to what exercises you are doing?

      Regards, JG

    • #13586
      21tomlinson
      Member

      Pain Diary

      Jgens –

      Sorry for not writing recently. I need to stay up with my diary entries. Dr. Chen is an awesome Doctor, however he is a general surgeon, and general surgeons do not perform orchiectomies. Only urologists perform this procedure.

      I try to do regular exercises like bench press, squats, curls, and pull ups at the gym. Running seems to set the pain off the worst, but activity in general seems to aggravate it (walking, sitting, etc.)

      As mentioned before, I usually feel pain free when I first wake up. This iz why I think there is a nerve injury that gets aggravated as soon as I start moving. I just don’t know which nerve it is.

      One thing I am sure of is that time is not going to make it any better. I have suffered this pain for a year now, and am suffering just as bad now as I was a year ago. So it will not get better on its own. That I am 100% certain of. It needs to be surgically fixed. I just don’t know if it can be. That’s what scares me. If it can’t be fixed, I will have to make a horrible decision. There is just no way around it. I can’t live with this pain.

    • #13587
      drtowfigh
      Keymaster

      Pain Diary

      21Tomlinson:
      Has anyone evaluated you for a simple cause for your pain: such as a hernia recurrence?

    • #13589
      fromindia25
      Member

      Pain Diary

      I can relate to this. I am having same kind of problems after my hernia repair and i am just 25 year old

    • #13590
      21tomlinson
      Member

      Pain Diary

      Dr. Towfigh:

      When Dr. Chen performed my laparoscopic genitofemoral neurectomy back in February, he checked for a hernia and did not find anything. My pain was caused, somehow, by a spermatic cord denervation. I know that this is an unusual cause for neuralgia in the groin, but somehow it occurred. Dr. Chen and I both believed that the pain was being caused by a genitofemoral nerve injury, but I have continued to suffer the same pain even after resection of that nerve. I experience burning in the groin and scrotal skin.

      There is definitely something pathologically wrong. Ilioinguinal nerve injury maybe? That’s the last thing I can think of. I can’t think of what else it could be.

    • #13593
      fromindia25
      Member

      Pain Diary

      you might want to try http://www.purclinic.com/

    • #13594
      drtowfigh
      Keymaster

      Pain Diary

      21Tomlinson:

      Im happy to see you if you can benefit from another set of eyes on your situation.

    • #13631
      jgens99218
      Member

      Pain Diary

      21Tom

      How has it been going for you recently? We have not heard from you in awhile, I for one am concerned.

      Please provide us with an update.

      Thanks

      JG

    • #13695
      21tomlinson
      Member

      Pain Diary

      Hey everyone,

      Sorry I haven’t posted for a while. I have been in a lot of pain and haven’t really had the energy to post. I recently took my final shot at curing my problem, a groin exploration along with neurectomy of the ilioinguinal and iliohypogastric nerves. However, it unfortunately did not help me. For some unexplainable reason, I still am suffering from the same burning scrotal pain that I have suffered from since I made the unfortunate decision to undergo spermatic cord stripping surgery.

      I don’t how it’s possible that I’m still suffering. The only thing I know for sure is that there is no longer any hope for me. There is no longer any hope of enjoying life again, of having a career, of having a family. It is all gone now. At one point, I really had hope that I could be cured. But I know now that there is no possibility of this.

      I never expected my life to end this way. I’m 34 years old, and had a lot more life ahead of me. It’s gone now though. At this point, I am just living on borrowed time.

      I wish I could go back in time and not let that doctor trick me into spermatic cord denervation. But I can’t do that. I died on that operating table.

    • #13696
      21tomlinson
      Member

      Pain Diary

      Dr. Towfigh, do you know what could be wrong with me? How could a spermatic cord stripping surgery harm me this badly? And even if the urologist did harm me, shouldn’t cutting the genitofemoral, ilioinguinal and iliohypogastric nerves at a higher level have fixed the problem? Why am I still in pain? Why can’t I figure this out?

      I don’t want it to be over.

    • #13697
      jgens99218
      Member

      Pain Diary

      Dr Towfigh

      As I last posted in the thread “Options after open triple neurectomy + meshoma removal” (still unanswered) If the standard neurectomy is done correctly in the first place then why would a neurectomy “higher up” be necessary? Why wouldn’t the higher up neurectomy just be done in the first place?

      Do you think 21tom’s resolution is just a matter of time?

      Thanks JG

    • #13698
      drtowfigh
      Keymaster

      Pain Diary

      21tomlinson: I’d have to physically se you and review all that’s been done to figure it out. You’re quite complicated and seemed to have undergone all the right procedures.

      But there is always hope: a missed nerve, a new neuroma, a hernia recurrence, etc. there are also localities we can try to address your pain besides surgery if it’s none of the above and more of a nerve system issue.

      I am happy to see you and help you. But you have to be patient with me and allow me to figure it out. Another surgery may not be your answer. You remember I was concerned that you have been having a lot of back to back operations, with potential of compounding your problems and not curing them.

      Jgens: every patient is different. Anatomy can be different with aberrant nerves and branches. Some are more likely than others to develop scar tissue, neuromas, and so on, which in essence results in recurrence of the same neuropathic pain. In others it’s a completely different probem that is being missed. And there are complications with each procedure. For example, Higher neurectomy in some cases can denervate the abdominal wall causing potentially irreversible abdominal protrusion on one side.

    • #13699
      jgens99218
      Member

      Pain Diary

      Thank You

    • #13700
      Chaunce123
      Member

      Pain Diary

      21tomlinson, I am sorry you are going through this suffering. There is always hope, don’t give up!

      I hope this is not out of line, but there are some nontraditional treatments out there for chronic pain that perhaps are worth exploring or looking into. I am not a doctor so you would want to discuss these options with your care provider.

      One is called ketamine therapy, which I believe is a low dose anesthetic. There are clinics around the country which perform this, and there is some evidence that it can be effective for otherwise difficult pain management. It looks like there are ongoing studies about this, but here are some links and some supporting research if you are interested.

      http://www.ketamineclinics.com/ketamine-treatments/pain-treatment/

      http://www.californiapainmedicinecenter.com

      http://www.ncbi.nlm.nih.gov/pubmed/18266808

      https://www.researchgate.net/profile/Graham_Hocking/publication/8993984_Ketamine_in_Chronic_Pain_Management_An_Evidence-Based_Review/links/0fcfd509b0fac70385000000.pdf

      http://www.ncbi.nlm.nih.gov/pubmed/23432384

      http://www.pharmacytimes.com/publications/issue/2014/august2014/ketamine-reinventing-chronic-pain-management

      Another is pelvic rehab physical therapy, which is a bit harder to find for males, but there are some positive outcomes that can be reported for pain syndromes for both male and females with the rehab therapy.

      Locations

      https://pelvicguru.com/2016/02/13/find-a-pelvic-health-professional/

      Finally, and this is by far the most controversial so please don’t take offense to this, but ongoing research supports certain types of medical marijuana as potentially beneficial for chronic pain. If you go this route, please seek out a qualified knowledgable doctor and not a hippy on the street corner, as it appears the type of marijuana matters, as do other factors.

      http://jama.jamanetwork.com/article.aspx?articleid=2338266

      http://ns.umich.edu/new/releases/23622-medical-marijuana-reduces-use-of-opioid-pain-meds-decreases-risk-for-some-with-chronic-pain

      https://www.nabp.net/events/assets/Carter_Aggarwal.pdf

      https://www.cdph.ca.gov/programs/MMP/Pages/default.aspx

      There is also something called a TENS unit, which I think uses electricity to disrupt pain signals, but I think you’d need to work with a doctor to have it target the proper regions.

      Perhaps some of this information will be helpful to you (or to others in similar situations). Do your best to stay positive, and don’t give up!

    • #13705
      DrEarle
      Participant

      Pain Diary

      21Tomlinson – Hang in there my man. Don’t give up. You should consider alternative forms of health care – there are many, and I am no expert in them, but one of them is bound to help. Acupuncture, massage therapy (there are many), holistic medications, naturopathy, and even dietary measures like the paleo diet, among others. If possible, try to get off the narcotics, as they can cause receptor up regulation, and actually make the pain worse in the long run. It doesn’t happen to everyone, but it’s something to consider. Hope this helps!

    • #13708
      21tomlinson
      Member

      Pain Diary

      I believe I’ve figured out what is wrong with me. I have central sensitization of pain. That’s why none of the nerve surgeries are working. The injury to my ilioinguinal and/or genitofemoral nerves caused my CNS to be in a constantly hyperactive state, and thus I will always be in pain even if the original injury is taken away. That is why I cannot get better. My body will no longer let me.

      The only thing I can do now is to try and live out the rest of my days as comfortably as possible. I have a long way to go. I’m only 34, so I’ve got about 40-45 years of suffering ahead of me. Having any sort of quality of life is out of the question. I just have to try and live as comfortably as possible. My life is gone.

    • #13709
      drtowfigh
      Keymaster

      Pain Diary

      This is why it is important that you don’t jump from operation to operation.

      There is treatment for centralization of pain. Are you being treated by a Pain Management Specialist?

    • #13710
      21tomlinson
      Member

      Pain Diary

      Dr. Towfigh:

      I am, but he’s not really helping. He wants to put a spinal cord stimulator in me. Dr. Chen feels that these devices are ineffective for inguinal neuralgia.

    • #13711
      DrEarle
      Participant

      Pain Diary

      Hypnosis therapy and meditation are also alternatives. I like to think of the “alternative” forms of medicine as keys that unlock your CNS potential to cure whatever ails you. We all have different locks, hence need different keys. Unfortunately, we have to find the key that works by trial and error. That means you should keep trying all options until you find the one that works. I believe that if you keep trying, you will in fact find the one that works, and you will get your life back.

    • #13712
      21tomlinson
      Member

      Pain Diary

      I am tired of fighting, Doctor. I can’t keep searching for a cure that I may never find. I have searched for over a year, and I have suffered unimagineably for every day of that year. I am in so much horrific, agonizing, pain. I only see 2 choices now:

      – Committing suicide

      – Having a hemicorporectomy (A surgery to remove the lower half of my body.) At this point, I would do it just to live what remains of my life in comfort

      I probably would not find a surgeon willing to perform such a procedure considering that I do not have a terminal illness, just pain. Plus, the cost is exhorbitant.

      I don’t see any other way out.

    • #13713
      DrEarle
      Participant

      Pain Diary

      I’m sorry you feel that way. It must be awful. If you are really thinking of suicide, you should call 911 for help, or go to an ER. Depression can drive these thoughts, and many times they can be successfully treated, and people feel normal again.

    • #13714
      21tomlinson
      Member

      Pain Diary

      Believe me, I do not want to die. I had a career. I was just about to being my masters degree. I worked out every morning. I absolutely loved life. I don’t have depression. I have severe suffering. And there is no longer any way out other than suicide or cutting off the lower half of my body. I’d gladly do that just to keep living.

    • #13715
      drtowfigh
      Keymaster

      Pain Diary

      Again, surgery is not your friend in these situations. There are great Pain Management specialists near you to handle centralization of pain. It does not involve surgery. Talk to your own Pain specialist and follow their lead if they’re comfortable treating that problem. You’re not treating a single neuralgia anymore. Those who I work with and have had great results are:
      Dr Samimi, Lalani group
      Dr Payam Vahedifar
      Dr Tim Davis

    • #13719
      21tomlinson
      Member

      Pain Diary

      I’m crying right now. I don’t want to suffer anymore. I just want to live but this horrible pain won’t let me. I just want it to end.

    • #13721
      Chaunce123
      Member

      Pain Diary

      21tomlinson, hang in there. I know you’re having a tough time right now. If your pain right now is severe and causing serious despair, you should go to the ER – they can help and offer immediate support.

      Maybe today you can leave a voicemail at some of the office clinics of the providers offered here. Otherwise maybe call them first thing tomorrow morning and arrange an appointment for ASAP.

      I would highly encourage you to go to a new pain management specialist if the current treatment protocol is not working. There are many things to try to manage pain and to help. To me it sounds very clear that your current provider is not understanding the severity of your condition, and to me that says you need to find someone who does understand and is willing to try new things.

      Don’t give up, don’t feel hopeless, you can fight through this. Keep trying things until you find something that helps.

    • #13729
      21tomlinson
      Member

      Pain Diary

      Dr. Towfigh:

      I was reading some research by renowned Pain Management Specialist Dr. Forest Tennant regarding centralized pain. He was saying that the time limit to prevent pain from peripheral nerve injury from becoming centralized is 6-weeks. His belief is that if the nerve injury is not cured within this time frame, the pain will centralize and then no longer be curable.

      I know that the research you and other Doctors have done on post-herniorrhaphy neuralgia usually states that patients should wait 6-months to 1-year prior to reoperation to resect the damaged nerves. I just wanted to mention what I found from Dr. Tennant, as it may be a basis for moving up the 6-month to 1-year timeline to prevent pain from centralizing as it obviously has in my case.

      That said, I know that I am kind of an oddball, because it appears that most of the patients you have helped recover from post-herniorrhaphy nerve damage have not had the centralization problem. I guess I am just one of the unlucky ones 🙁

    • #13844
      drtowfigh
      Keymaster

      Pain Diary

      The number I was told by one of our pain docs is 9months. That is, if pain is left untreated for 9months, that increases your chances at centralization and reduces your risk of cure.

      That said, these are all risks. They are not 100%. For sure I have patients with much longer chronic pain without centralization of pain and who have been cured.

    • #13900
      21tomlinson
      Member

      Pain Diary

      Thanks Dr. My pain management specialist believes that this is Reflex Sympathetic Dystrophy caused by cautery damage to the genitofemoral nerve. He believes this is why the neurectomies have not worked in curing my pain. What is your feeling on this diagnosis? From what I’ve read, RSD usually affects a limb and not the groin/pelvis.

      My pain doc wants to implant a Dorsal Root Ganglion stimulator in me. Apparently these were just recently approved and have shown efficacy in helping patients with intractable groin pain from nerve damage.

    • #13901
      drtowfigh
      Keymaster

      Pain Diary

      Yes. There is a new treatment as you mentioned.

      RSD is more common in the extremities but for sure can be seen related to the groin.

      Sounds like you are in good hands and moving in the right direction.

    • #13911
      21tomlinson
      Member

      Pain Diary

      This incurable pain caused by the denervation is so horribly agonizing. The urologist assured me that the procedure was completely safe and that nothing could go wrong. Then he brushed my postoperative pain off as anxiety and blocked me from contacting him.

      It disgusts me that monsters like this are disguised as medical professionals. My quality of life was stolen for no reason.

    • #14004
      21tomlinson
      Member

      Pain Diary

      Just an update. As I may have mentioned before, I have been diagnosed with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy in the pelvic region secondary to the nerve damage caused by my spermatic cord denervation surgery.

      My pain management doctor has recommended a Dorsal Root Ganglion Stimulator, as this is the last known surgical procedure that could possibly help me.

      Unfortunately, this procedure has been denied by my HMO as being “not medically necessary.” The “physician reviewer” actually had the gall to state that my pain “is not severe enough to warrant this procedure.”

      Words cannot express how incredibly soulless and stupid I find this statement to be. My groin feels like it’s perpetually being stabbed by hot pokers and my skin feels as though it’s being burned in acid.

      I am so thoroughly disgusted with the medical profession. It was a doctor who did this to me, and it is clear to me now that many doctors are not in the medical profession to help others, but rather to make as much money and kill as many innocent people as possible.

      There is no help out there for me. No one cares about what has been done to me. It makes me sick to my stomach.

      I realize that there are good doctors out there who truly care for others. Unfortunately, they are overshadowed by soulless, uncompassionate monsters like the ones who continue to willfully hurt me.

    • #14010
      Paul277
      Member

      Pain Diary

      I am in a similar situation, however i lost a testicle through misdiagnosis of testicular cancer and have chronic pain in my groin and testicle on the other side. Its like a constant reminder of the trauma ive been through. Im having surgery next month to see if heres a hernia but im really worried that they’re not gonna find anything and it’ll be classed as nerve damage etc. You need to know ur not alone in this. I was 28 and a very active bodybuilder in the best shape of my life. Then the pain started and its cost me a testicle, my confidence, my mental health and almost 3 years of my life. You are not alone my friend. The only way ive survived so far is to coach myself into seeing this whole saga as a challenge i must overcome. If u can make it through this u can make it through anything. I turned to drugs in the first year, cocaine and ecstasy to numb the pain and somehow got through it. Im not sure if i can give my personal email on here but if u want to contact me through that I’ll try and send it.

      Cheers

      Paul

    • #14009
      WasInTN
      Member

      Pain Diary

      To Tomlinson and Paul

      What I would do if I were in your shoes.

      1. Find out what exactly can relieve the pain. Surgery? Medication? Therapy?
      2. Find out the correct surgeon by talking to people – anyone and everyone who knows and who can talk. And find *THAT* surgeon who can fix and talk to him, his patients and everyone around to see if he is THAT surgeon you need.
      3. Find the costs in total and add 20% for sundries
      4. Report matter to local TV, CNN and everywhere on how you were cheated, how your insurance is denying treatment and why your pain was not going away and how you are right in the middle of painful hell. I will even release a you tube video with tears rolling down my face.
      5. Get solid proof before going to surgery table that this surgeon can confirm my pain *and* relieve me of it – at least to a witness or on audio or someway to produce it in court.
      6. Once I found the surgeon that could fix and the costs, if I need money badly I will go to crowd funding websites, bitterly write these details and ask for funding from public. This step I will do along with (4) above. People are very generous and will support.
      7. Continue to push buttons till you get relief – complain bitterly to the FDA, medical communities, local news papers, write long letters to insurance companies and even put a CC to public.
      8. Washington Post has a column that does the “solved medical mysteries” series. I will email her and talk to the post too to find more details.

      Push every button I have in my brain as idea and then pray to God. In one sentence “I will go all out.”

      Paul – if you are UK you have to find a different news paper I think but Washington post is most likely to accept your case too if you get relief.

      BTW people are using crowd funding for going to other countries for volunteering and they are funded well. I am sure people will fund the surgery if it is that prohibitively expensive. But make sure you find **THAT*** correct surgeon to get you fixed. Once you go through the surgery, you cannot complain a second time. Remember that point.

      Have I done this before? I did this for my Microwave that was dead. It may seem trivial but it worked for me.

      An Over the Range Microwave was purchased in Menards (home depo like shop) It died after 10 months abruptly. Calling the shop revealed that counter top microwaves can be returned but OTRs are NOT returnable. Please contact the manufacturer. Manufacturer has 800 number that nobody answers and an email that nobody responds. So I email again and again and now put CC to the local TV (fox TV) lady who investigates such things. I found that from watching Fox TV. So now that the TV is in, for info, the email has been replied by the manufacturer. Sorry that the microwave died, we can send a repairman. He comes and says he cannot fix. Great, now email back to the guy. Okie dokie we will give the money back and he sends me a check. To my horror the check bounced at bank and now bank charges me $35 for bounced check. Excellent. Now I go back to Fox TV lady and then this guy at Microwave manufacturer with an additional complaint. Oh, did it bounce? if you give me your bank account I will transfer money directly to your bank. Ha ha not so fast. I never give bank account to 800 numbers and faceless guys who send bouncing checks. I email him now – send me money order and include the bounce fee or I am going back to Fox TV (did I say unwanted publicity?). By evening when I go home I have the money order and the case is closed. Total time to solve the problem – FOUR months. Cost of Microwave? $99.

      No, I am not saying that IH surgery is this easy but at least you can try. Crowd funding is no more a joke. It is very real and people really help. Also I will use Facebook, twitter and everything under the sun. If the surgeon is good one you can even arrange for a payment plan with him. Most good surgeons agree for a payment plan. Even hospitals do. Nothing is frozen in cryogenic temperatures.

      BTW this is what “I will do” but please feel free to trash this idea since you may or may not have interest in this kind. I wish you all the best.

    • #13996
      Joy
      Member

      Pain Diary

      I am also in the same position, have also been diagnosed with CRPS and also had my DRG surgery denied this week. Here’s what my insurance gave as the reason (I am not making this up!): “Your request tells us you have had back pain (sic) for a long time. Pain can come from both the body and the mind. We need to know that you have seen a psychologist who has determined that your pain is not in your mind”(…etc etc). I am not sure the DRG stimulator is the way I want to go yet, but the letter was very offensive. I got straight on the phone (the inevitable wait just got me madder) and gave the poor gal in the first stage of the appeal an unequivocal piece of my mind. I am demanding a rewritten letter with the CORRECT pain location (doesn’t the doctor read the person’s medical history???) and an apology for the insults and also for the ignorance exhibited by the MD reviewing this. All pain is a perception from the mind,I told the poor gal (who was very kind and professional and said not to worry it was being appealed on Tuesday by my doctor anyway) and how could a psychologist ever say it WASN’T!!! I was told a doctor or nurse would try to call back in an hour (just before Labor Day, so I wasn’t too hopeful, and of course they didn’t call), but I intend to stick to my principles here. I want my record squeaky clean, for many reasons, not the least of which throughtout this now 3 year nightmare I have even restrained myself from crying in doctors’ office for fear someone might see me as anything other than someone who deserves the best medical care there is to give. Of course I cried after I got off the phone, partly because I felt so bad for emoting so someone who has nothing whatsoever to do with this letter 🙁 , or my hernia surgery-related problem for that matter, but also because I have been a customer for many years and I pay insurance dues, and I continue to work to keep my insurance, and here they are cheaping the process for deciding on procedures out to someone who doesn’t even get the correct body part. Wow, keeping fighting for your rights! I intend to do so too! Can your doctor appeal in a peer-to-peer meeting? That’s what mine is doing

    • #12409
      drtowfigh
      Keymaster

      Pain Diary

      All excellent suggestions.

      Patients should advocate for their care. In fact, insurers are more likely to listen to patients than doctors. Yes, it’s true!

      So make a big stink about your situation. Have your doctor do a primary and secondary peer review. Write letters to your congressman, the Insurance Commissioner for your state, and whichever congressman sits on that committee. Write public reviews. Better business bureau. Yelp. Whatever it takes.

      It is horrible that pain control is considered not indicated. It’s just not true.

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