Ok, today’s post is all about me but also contains important messages to ANYBODY needing or undergoing medical care in the United States.  Turns out our medical system has some huge holes in it.  Here’s one.

Eight years ago I developed a stabbing pain in my right groin and a throbbing pain in my right testicle.  Initially diagnosed as a kidney stone, 3 CT Scans later and it was determined I had no stones.  Then I passed a fairly large kidney stone.  Turns out mine are radiographically invisible; of course mine would be impossible to see.

The pain continued.

The last resort from the Urology department was a Ureteroscopy.  This is a procedure where they insert a very small camera into your penis and thread it through your bladder all the way up your ureter to your kidney.  IF I had anything going on in my urinary tract they would find it.  They found nothing.  As a precaution they left a stent in my ureter which turned out to be one of the most painful experiences of my life.  So scarred and bruised and emotionally drained I was faced with massive chronic pain and no diagnosis.

My primary care doctor at the time acknowledged he was out of ideas.  I was on the strongest pain medication he had available (I had Kaiser Insurance at the time), and I was miserable.  I think it was about this time when my Mother was diagnosed with terminal ovarian cancer.  My husband and I now refer to that period as “The Dark Period”.  I weighed 250 pounds (vs 195), spent most of my time at home and drinking at night.  I honestly thought my life was over.  Then Google intervened.

At one point in time Google announced they were going to scan everything that had ever been written and index it on their site.  One of the documents they scanned before getting shut down by the courts for copyright infringement was a medical case study of an adult male that had undergone my exact same experience right down to the stent.  His doctors however diagnosed him as having Genitofemoral Nerve Entrapment and they treated it with Botox injections in his Back around L1-L2 where this particular nerve originates.  It worked for him and after I showed my doctor he referred me to Kaiser’s botox guy and it worked for me. More or less. By the way, when I went back and tried to find the case study that saved my life I could not.  I have searched many, many times and it’s simply gone.  Thank you God for putting it up there the one desperate night I was searching for answers.

I was able to resume a mostly normal life without pain medication.  I lost a bunch of weight, my partner and I rejuvenated our relationship (Thank God), and life went on.  My Mom died, my partners’ Father died, but we persevered, got married, bought a beautiful home and life was great.  Except I still had pretty serious chronic pain in my Back from injuries I had received and, again, nobody seemed to know what to do, not even my Orthopedic doctors.

Again, thanks to my research and a fluke encounter with a Pain Management doctor, I was introduced to Facet Joint Nerve Ablations which COMPLETELY knocked out the back pain I was having.  I had a new Pain Management doctor, a fantastic guy, and he referred me to an Interventional Anesthesiologist to get the Ablations done.  But then my last Botox shot failed and my groin pain came roaring back.  Again I was knocked down to my knees but this time more optimistic because Google Scholar has a ton of medical information in it and it’s not bogus crap like you can find on plain old Google.  I started searching for solutions to Genitofemoral Nerve Entrapment.

I want to digress here for just a moment.

For 8 years I had asked my doctors, any doctor I came in contact with, “Why can’t they just cut the little sucker out?”.  By “sucker” I mean the Genitofemoral Nerve.  Every single doctor answered basically the same way.  “It doesn’t work like that”.

Guess what?

It works EXACTLY like that!

but there are only a handful of surgeons in the United States that do the procedure.  Another miracle opened up in front of me and then kept opening.  One of the surgeons is based here in San Diego and in less than a month I had multiple appointments with him, had multiple scans done to rule out anything else, then had my pre-op appointment and yesterday I underwent a 3 hour surgery to remove the Genitofemoral Nerve.  As it turns out there was also a 2nd nerve involved (I was pretty stoned when the Surgeon was talking to me after the procedure so I don’t remember what the 2nd nerve was) and I also had a small hernia.

This is day 1 after the surgery and while it’s a bit painful, I can already tell that the stabbing pain that I used to get is gone.  In fact, I’m amazed at how little pain I do feel but some of that is due to a miracle drug that all of you need to write down in case you ever have surgery.  Exparel is a time-release local anesthetic that will keep you numb for a few days.  It was originally introduced for Hemorrhoid surgeries  (introduced to San Diego by my surgeon) and is now used for a slew of different procedures ranging from Mastectomies to, well, what I had.  (Open abdominal exploratory surgery with a double neurectomy of the Genitofemoral Nerve and the ???? Nerve and a hernia repair).  By the time the numbness wears off a lot of the healing (and pain) will be done.  In the meantime I’m completely comfortable with a handful of Percocet every day.  I don’t anticipate needing the pain meds for more than 3 or 4 more days.  It will be nice to be off of them after months and months of constant use.  Without them I was bed bound.

So, the lesson here is this.  Don’t believe your Doctor when he tells you there’s no solution and certainly don’t ever give up.  There’s a service out there you can subscribe to called Wellthy.Com  They will help you track down basically any kind of medical care/help you need.  They found my surgeon here in San Diego and two more in Los Angeles.  I had only found the one doctor in LA.  I believe these are the only 3 doctors in Southern California that do this procedure.

I want to repeat this.  DO NOT GIVE UP.  I can’t tell you how many times I was so frustrated it brought tears to my eyes.  Of course I considered suicide but never seriously.  The wave of destruction that would cause is simply not acceptable.  I stopped exercising (except for two 500 mile treks across Spain) and my life got a lot smaller.

My amazing husband stood by me the entire time and cheered me on when I discovered the surgery.  I think you can tell by now that I’ve had a lot of luck in my life.   Tim, my husband is living proof of that. We are only months away from our 10 year anniversary and I couldn’t love him more than I do now.  That’s something else that should be taken away from this post.  Get a support network.  If you don’t have a partner, find a smart friend or even find a group dealing with chronic pain.  They are out there.  GET HELP if you are overwhelmed.

I’m facing a virtually pain free life when this surgery heals.  I haven’t been pain free for 25 years since the first time I broke my Back.  Yes, I will no doubt have issues later on; my spine is a disaster, but for now with the ablations and this surgery I see clear sailing at least for a while.  I’ve got a grueling diet ahead to shed these pounds and it’s really going to hurt to start working out again, but I am so looking forward to the day when I’m lean again.  I hate to disparage overweight people especially since I am one now, but life is just a lot better when you aren’t carrying a lot of extra weight around.  Another lesson from this blog; get healthy!

I love my life right now.  I’m proud of myself for tracking down this cure and then making it happen.  I’m super proud of my Husband for standing by me, extra pounds and all, I’m in awe of my surgeon, Dr Jeffrey Mazin.  I derive great joy from my family (Nephews, Nieces, & Great Nieces) and my one surviving brother, we love our home and we even have the greatest dog on earth; a 4 year old doberman female.  She is so cute she makes you weak in the knees.

If you are reading this and saying F**k Y*U because your life sucks right now; before you get too carried away you should know that I have experienced things that would give you nightmares.  Death, mutilation, multiple serious injuries to myself, It has not always been easy but I NEVER GAVE UP.

Tell me to F**k Off as much as you want.  But DON’T BELIEVE IT IF THE ANSWER IS NO, GET HELP, AND TRY TO STAY HEALTHY.  Once you accomplish that then the F**K YOU will turn into a THANK YOU and for that I say “You’re Welcome”.

Joe Jeter      June 15, 2018

 

 

For the strong of heart you can watch basically the same procedure I had yesterday.  Warning, it’s pretty graphic.