Sunday, April 7, 2019

Preparing for Surgery #9...or is it #8?  And...this is NOT cancer!
It's hard to imagine that someone might not be able to remember how many surgeries they have had....but it's true.  I'm preparing for #9, although it might be only #8.  If you know anything about me, or my health history....I have had cancer 3 times.  I was 21 when I had it the first time, 42 the second and 53 the third.  In between there were bowel obstructions and many, many complications from all three cancer surgeries.  So now, after suffering from excruciating sciatic pain for the past 10 years, I am giving in to the recommendation to have a nerve decompression surgery.  This one should be minor, compared to the many MAJOR surgeries I have endured, but I'm terrified, nonetheless.  I've put it off for so long, and if I don't have it, I might be facing some nerve damage down the road.  I have tried EVERYTHING...and I mean everything in the past 10 years to alleviate the pain.  During the past 8 months I have not had one pain-free day!  Scary, huh?  In fact, I wrote about my sciatica (in a piece called "MY SCIATICA) about 9 years ago, and quite surprisingly, everything I wrote then is basically still true today.  I've shown this to many people, and most people have told me to publish it I'm self-publishing it here:

My Sciatica
I have survived 3 bouts of cancer, 8 surgeries, so many hospitalizations that I have lost track, but now, I truly believe that sciatica might actually kill me. I have been dealing with minor hip pain for several years, but it got significantly worse last year when I spent 23 days on my back at Stanford Hospital recovering from a huge Whipple surgery (feel free to Google it!) to treat neuroendocrine pancreatic cancer.  The diagnosis of this tumor took about 8 months and during that time I underwent octreatide scans, CT scans, MRIs, ultrasounds, biopsies – you name it, I had it.  During that time, I also got more medical advice than I ever thought I’d receive about what to do, where to go, who to see, etc.  But, I have to say, that was absolutely NOTHING compared to what I have experienced dealing with an excruciating pain (did I say excruciating?) from my left buttocks shooting down to into my foot.  I describe it as an electric volt shooting down my leg, or at times it feels like someone is taking a knife and slicing through the nerve running down my leg.  This pain started out as a bit of an annoyance, but in the past 5 months it is gotten exponentially worse. The pain is so severe at times that I cannot walk, sit, stand or lie down, and I’m not kidding.  OK, so what advice have I received?  I need to write this in a list form so you can get the full effect.
Don’t rest – move
Get a better chair for your desk (cost ~$700)
Move your computer screen higher
Have your legs at a 120 degree angle from your hips when you sit
Stretch (Just do these simple stretching exercises daily and the pain will go away)
Don’t stretch – the nerve doesn’t want to be over-stretched
Weight train (your muscles are too weak)
Don’t weight train (your muscles are over-worked)
Your muscles are too tight 
Your muscles are too loose
One leg is shorter than the other
You have poor posture
Your abs are too weak
If you do swim don’t wear fins, kick, do flip turns, or do breaststroke
Don’t swim
Use heat
Use ice (cryotherapy)
Combination of ice and heat
Tylenol and Ibuprofen 
Cook with turmeric, take turmeric but only curcumin
Use other dietary supplements including fish oils and SAM-E
Use Arnica
Take painkillers – but don’t get addicted
Take Gabapenten/Neurontin
Take Cymbalta/Duloxetine or other antidepressants
Don't take anything - nothing gets nerve pain
Do yoga, but only do Iyungar
Do yoga, but only therapeutic 
Don’t do yoga – it can make things worse
See an Ayurvedic doctor
Find out if you are Earth, Fire, Water, Air or Ether and treat accordingly
Find out if your doshas (Vata, Pitta, Kapha) are out of balance
Do Pilates
Don’t dance
Physical therapy
Massage therapy
N.M.R. – neuromuscular reprogramming
A.R.T. – active release therapy
Heller Body Work – but only 11 treatments at $200 each will work
Cranio-sacral massage
Cortisone injected into L4-L5
Cortisone injected into S1-S2
Cortisone injected into the hip, buttock, etc.
Cortisone injected anywhere
Lidocaine injections into the piriformis 
Intravaginal pelvic floor manipulation (Not kidding! Cost $800 per visit including injections above)
Get a morphine pump inserted or an implanted drug infusion (Not kidding!)
Get back surgery (see a neurosurgeon or an orthopedic surgeon - I saw both!)
Stop drinking coffee
Drink coffee
Stop drinking wine or any alcohol
Drink wine or any alcohol
Try medical marijuana (any form, CBD, THC, smoke it, eat it, use the cream)
Buy a new bed (We did.  Cost $5,000)
Sleep on your side
Don't sleep on your side 
Sleep on your back
Never sleep on your stomach
Buy an inversion device to hang from (Got one. Cost $350)
Have a spinal fusion/discectomy or micro discectomy/foraminectomy for my herniated discs 
Get a nerve block or a radiofrequency ablation of the nerve
Do TENS (Transcutaneous electrical nerve stimulation)
Do PENS (Peracutaneous electrical nerve stimulation)
Have a spinal cord stimulation implant
Have bioelectric therapy
Do biofeedback
Have Reiki work
Read Dr. John Sarno’s books: The Mindbody Prescription and Healing Back-Pain; the Mind-Body Connection (The premise: talk to your brain – tell it you won’t take it anymore!)
Don’t do too many things at once

So, despite the advice about not doing too many things at once, I’ve tried just about everything on this list.  (I’m not kidding!)  And I believe I’ve spent approximately $100,000, some of it covered by insurance, most not.  I’m sorry to report that NOTHING has worked.  Yes, I’ve gotten some relief from some of the treatments, but it is generally temporary, or fleeting might be a better way to describe it. I’ve said several times to my amazingly patient, and need I say worried husband, Richard, that my diagnoses of cancer were much easier to deal with than this crazy diagnosis of sciatica.  Well….maybe it’s sciatica.  It could also be, but not necessarily …..(another list):

A very, very tight IT band
An impinged sciatic nerve
An impinged obturator nerve
An impinged sural nerve
Piriformis syndrome
A very tight QL (Quadradus Lumborum)
A bulging, compressed, or herniated disc at L4, L5, S1 or S2
Lumbar spinal stenosis
Spondylolisthesis (when a bone in the lower part of the spine slips forward and onto a bone below it)
Pudendal nerve entrapment
Impingement/compression syndrome
Trauma to my spine
A build-up of too much scar tissue from all of my previous surgeries
A congenital condition (see next item)
Scoliosis (which I definitely do have)
Bone spurs in the lumbar spine
A tumor pressing on the nerve (could you imagine?)

So, where do things stand?  Early on in this process I saw an osteopath who tried very hard to tell me that I was mostly likely harboring some terrible thing in my life that I wasn’t dealing with. The energy she felt was just so blocked up – it had to be something.  “What are you afraid of? not dealing with? not being honest with yourself about?….come on, there is something blocking your inner energy fields.”  Honestly.  If my internal coping mechanism of denial was causing this excruciating (did I mention that this pain is really, really severe?) pain, then maybe all I needed to do was to go see a shrink?  The problem there is that I happen to live with one, and a really, really smart one, and I think he would be quick to acknowledge that I am not harboring any “inner demons” as the osteopath suggested, and I am certainly not crazy! Except for my cancers, I’ve had a pretty good life.  Honestly. If bad things in one’s life cause a terrible pain down one’s left leg (whatever the diagnosis might be), then I would say most everyone in the world would have this….and they don’t.  So much for me harboring something bad which might be causing this.  So much for blaming the victim.  (May I mention that before this osteopath started working on me, she sensed that there was a man in the room, a ghost or a demon, actually, and wanted to know if I had lost someone close to me who might be paying a visit?  I had not.)

So, what’s next? I will continue on my quest to get rid of this pain.  I swim every day, and that is the only time I am actually pain-free.  There is something about being horizontal and being in the water.  I refuse to let this get to me, but there is a limit to how much pain one person can take. Currently, I’m just seeing a physical therapist, and I have an amazing personal trainer –  neither one blames me for the pain.  I like that a lot.

Postscript: I recently showed this piece to a friend who also suffers with sciatica.  She had a few things to add to my list: (Some of these were also told to me, but I forgot to mention them!)

Light therapy
Sleeping with a pillow between my legs
Sleep with legs elevated
Gluten free diet
Weight loss
Strengthen core
Strengthen hamstrings


So, after 10 very long years of dealing with this, I am going to having surgery. I do not have a  choice, and I found a truly extraordinary neurosurgeon to do it, right here in Berkeley. Now, I can't wait!

Just as there seem to be anti-vaxers out there in the world, there appear to be many anti-surgery folks around, and they are completely comfortable telling me that I should absolutely NOT have surgery, or if I do choose to have it, where I should have it and what surgeon should do it.  Honestly, I don't know why I'm so amazed at people's reactions to our personal health-care decisions.  Astonishing, really!

I'm so excited now to have this operation.  I am praying that all goes well and that there will be no complications or hiccups.  The down-time should be minimal, and I will count the days until I will be able to swim.  But, I've been here before, and I've recovered each time from surgeries way more complicated than this one. 

Now all I need is some powerful thoughts and maybe some prayers.  I'll get through this and come our the other side, hopefully pain-free. This is NOT cancer.  I can't wait to have my life back!

Photos are from a beautiful pre-surgery healing ceremony performed by my wonderful friend, Rabbi Tsipi Gabai.  I was surrounded by good friends and lots of love...and great food.

1 comment:

  1. This piece was amazing ! Thanks for writing and sharing! Sciatic pain is insane . I’ve had L-5,S-1 surgery twice (only because I was re-injured via an assault). I’m with you all the way !