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Pain Diary
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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!
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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
http://www.ncbi.nlm.nih.gov/pubmed/23432384
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.
http://www.pelvicpainrehab.com/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
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!
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Pain Diary
Thank You
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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.
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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
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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.
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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.
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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
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Pain Diary
21Tomlinson:
Im happy to see you if you can benefit from another set of eyes on your situation.
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Pain Diary
you might want to try http://www.purclinic.com/
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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.
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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
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Pain Diary
21Tomlinson:
Has anyone evaluated you for a simple cause for your pain: such as a hernia recurrence? -
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.
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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
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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.
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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.
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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” skaadland@hotmail.com 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. -
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.
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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.
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