CoralToes and buzzing butts!
 

Hello Everyone! After posting a couple of comments in Mark's Boston Scientific SCS thread, I figured I would start my own for a proper introduction. My story is long, so bear with me!

My journey to chronic pain started in 2004, after a broken toe and 4 Dr's - it was determined that I had a tumor in my toe called an aneurysmal bone cyst (ABC). This type of tumor is very rare, and is a benign but aggressive tumor. In other words, it is not malignant (cancer), but does grow fast, and is very destructive to the bone in which it resides. After many months of pain, I had surgery to scrape the tumor out of my toe, and pack it with a coral-based putty (hence my name - CoralToe). These types of tumors have a high recurrence rate, however they almost always recur within a year.....so as a couple of uneventful years went by, I thought nothing more of my toe.

Then, in December of 2009 (5 years from my tumor), I began having increased pain in my toe. Ever since my surgery, my toe acted slightly like a barometer - and was achey with pressure and temperature changes - but nothing too bad. This was different though, the pain seemed to be gradually getting worse.....and I was in denial. Finally, by Jan 2010 - I could ignore it no longer, and went to see a podiatrist (not the same one, as we had moved from Portland to Seattle after I finished Grad school)...Low and behold - my tumor was back, and was about 5x the size of the original. Back to surgery, to scrape out the tumor and pack it - this time with bone chips. Unlike the first surgery however....I never felt like I was healing, and the pain was constant. I will spare you all the details - but over the next year, I consulted with 4 different podiatrists and an orthopaedic oncologist - who all eventually came to the conclusion that the relapsed tumor had expanded the bone so much, that my toe was not longer in joint, and I had consequently torn my plantar plate on the bottom of my foot....I was referred to pain management in Oct 2010 (which I truly believe saved my life) - and was able to get the pain better controlled until surgery.

So, in Jan 2011 - I went back for a third surgery....this time more of a reconstructive/salvage job. My surgeon had to open large incisions on both the top and bottom of my foot, sew up the torn plantar plate and screw it in place, remove some bone from my toe and insert a pin to fuse it, and excise "the largest nerve my Dr had ever seen" from old scar tissue from the previous two surgeries. While recovery was long and arduous - I felt much better after this surgery, and hoped/prayed that my nightmare would be over.

As I had been on high levels of opiates for a few months, we waited until 4 months post op, and then started slowly lowering my doses. As I lowered my breakthrough meds, everything was fine. Sure, I had withdrawl symptoms...but no increased pain. Then we decided to start tapering my ER med (Opana ER). As soon as we lowered the dose (by a very small amount), ALL of my nerve pain came roaring back. I felt like the top of my foot was on fire, and the lightening was shooting out my toe. My Drs had warned my prior to surgery #3 that it was possible that I had nerve damage that would be permanent....and when the nerve pain came back, we all knew that this was indeed the case. This all happened this past May/June, so my pain doc has been doing her best to keep my pain controlled since then.

At my very first appt with her (in Oct of 2010, before surgery #3), she had brought up the possibility of an SCS unit. At the time, this scared me - as I was "sure" my pain was temporary, and that this was overboard to even think about it. She mentioned it every visit I had - never in a pushy way, but almost as a subliminal reminder to me to not give up if the pain did not go away. My pain doc is a doc of many "hats" - she prescribes meds, does injections, does ancupuncture and does SCS implants. In August/Sept I asked her for a few accupuncture appts - just to give it a try. These ended up not helping me, but during my last one she told me that she was giving a presentation about SCS implants to a handful of local MDs - and asked if I wanted to come along to listen. So, I rode along with my pain Doc, and her SCS rep, chatted with both, and got a very open view of the whole concept - from an MDs perspective (I should say that alot of this has to do with the fact that I have a PhD.....and most of my Drs treat me as a colleague and really listen to me when I have questions, concerns etc). By now I had also been reading a few forums here and there (this being one of them!), and decided that a trial was worth a shot....so we got the ball rolling.

I had my trial last week, and my leads pulled yesterday. It was an unbelievable success! I had not wanted to get my hopes up in case it didn't work, that by the time I had the trial placed - I had convinced myself that it was going to fail. I was very nauseous after the surgery, so didn't really get to play around with things until the next day....at which time I just stood in my living room in complete awe, shock and disbelief at the complete absence of pain! Day after day, my back felt better, and I pushed myself as hard as I could to try and make my foot hurt - and my little SCS unit kept pace the entire time. I begged my doc to let me keep the trial leads in - but alas they of course had to pull them yesterday. Within an hour my pain was back - which made for a very emotional night last night :( But - I now have a long-term solution to pain - and hopefully a means to lower some of my meds with a permanent implant. Right now, as long as insurance cooperates - I will have the full surgery on Jan 13th (happens to be Fri the 13th - which scares me a little). It will be a long 3 weeks, but I can handle that knowing that pain relief is on the horizon!

So anyway - I know this is a long post, but now you all know my story. I have read so many of your stories on here - and seen the comraderie between you all. No one understands chronic pain unless you have lived with it - and I truly hope to both give support to others on here, and also recieve support and encouragement from you all when needed :)

-Heather

Re: yeh good results!
 

:yahoo Glad the trial for your SCS pump worked for you. Every time there is a patient on this site that has good news is reason to celebrate. I hope the time goes fast until you can get your permanent pump. You have every right to be happy, and it gives hope to others. I know you will have a happy holiday, knowing there is help right around the corner.:):yahoo::Trapeze 2:ginnie

Hi CoralToe!
 

So happy that you found this site, and found some relief for your pain as well! The people on this forum are so helpful and understanding. Hope to hear of your premanent installation soon :hug:

Celebrate indeed!
 

:Head-Spin::Head-Spin::Head-Spin: Ginnie is right! This is a time to be very excited!
I know the waiting period in between will be a test, but stick with us, we'll help you thru it! We can get pretty silly at times.....helps keep the mood light :)
Feel free to vent when the need arises....we've all been thru the gammet of emotions.

Thank you for sharing your story and for starting your own thread! This will make it easy for us to follow along with you and you'll have a chronicled story of how this unfolds.

I'm really impressed with your Drs the way they take you 'seriously' and really hear you. You've been thru quite alot. Now it's time for some reward to come your way!

It's so great to have you, Heather!

:hug: Rae :hug:

Well Dr. Heather Coral Toes
 

It is marvelous, wonderful, and gratifying to read of your progression through the darkness of pain to the ultimate enlightenment of SCS as a real possibility!! Congratulations upon your successful Trial period.... NOW if only the 13th of Jan will arrive rapidly for you so pain abatement may once again be realized through these wondrous inventions.

I am still standing in awe of my experience. Your post reminded me well of that moment during Trial when my wife asked how I felt, and I became choked up, tears began to flow, and my reply was to the effect I could not discern pain! You know this for yourself now. I just wholeheartedly pray you will come to know permanence of pain management with SCS. I do. I am sold on it as a therapy most especially when the manufacturer rep allows the patient to become personally involved with the programming of the permanently implanted device. For this reason, the article awaits my submission to publication. It will be a blessing if it survives editorial review and makes presentation in front of physician eyeballs.

For you, my friend, I pray this season will be somehow collapsed into a brief period temporally, so you awaken one morning realizing "Hey, I gotta get to the surgery center!"

Take a number,
Prayin,
Mark56:grouphug:

Hi Heather!

Welcome to the group!

I'm so glad your trial was SO successful. We all enter with great trepidation in hopes of pain relief.

You say the three weeks will be long but it will go by quicker than you think. My Dr. would not consider implant for at least 2 months. His concern was infection. So waited I did and then was delayed for 3 weeks due to scheduling issues. The three weeks will give you time to get over the holidays and prep yourself and your home for recovery. Take the time to evaluate your daily routine and see what itadjustments you'll need to make so there is no Bending, Reaching, Lifting and Twisting. Look at what it takes to get ready in the morning, reaching for that cup for coffee or tea in the morning. Doing your hair... Laundry...Cooking... Climbing stairs. It all takes more than we think. Do you have a grabber to reach things above your shoulders?

So glad the trial brought relief. I wish you peace and calm until the day and that 2012 will bring you comfort and relief from pain.

Good Luck
Sandy Kay

Thank you all for the warm welcomes! Reading these forums as a "lurker" you guys all seem like such great group of people - who have come together due to their lot in life to be in pain - and yet support each other whole-heartedly through all of the ups and downs of pain management.

@Mark - I truly hope your article gets published. I think the ability to program myself really made the difference in my trial. I've already put my rep "on notice" that I want to program the permanent as well - and she has no problem with that. If there is anything I can do, or any way I can help (as like you I was able to program myself) for the article let me know. I work in cancer research, and publish in scientific journals all the time, so I may be able to help in some way :)

@Sandy Kay - I'm sure the three weeks will go faster than I anticipate. Today was so very long and drawn out - being my first day back with all my pain back. It was actually pretty depressing, and I had a hard time getting through today. I know I have hope now - but it was SO nice feeling "normal" ie no pain for almost an entire week! And I know all about prepping the house for surgery, although thank you so much for the reminder! I have had a laminectomy before (so know the whole BLAST and log roll routine), I have had shoulder surgery where I could barely move my arm and had to have my husband dress me, bathe me, and put my hair up in a ponytail every morning (he got quite good at that at the end...which is impressive for a bald guy!)...and then my three foot surgeries in which my average time non-weight bearing has been 2 months, during which my husband took care of me. I count myself so blessed to have such a loving man in my life. We are young, and I feel like I (because of my pain) have held him back from all of the activities we used to do (skiing, rock climbing, etc). Yet, for the last two years, he has done all the cleaning, all the grocery shopping, and even when I am in pain, and being a very grumpy wife - he still stands by my side. I could never have made it this far without him.....and I so hope that the SCS will give us some of that quality time together back. The one thing I do not have is a grabber - and after seeing many recommendations for this, I am going to pick one up this weekend :)

-Heather

Welcome Coral Toe
 

This is the place where you can vent, ask questions and get helpful opinions. I am also a newbie :p and had second thoughts about having a SPS installed. Not like you~~I did not like the trial so therefore I was very hesitant in considering the real thing. After getting questions answered here and from my doctor and the representative from the company I am now comfortable in having the procedure done. I am scheduled for Jan 3rd so hopefully the rest of my NEW YEAR will be pain free. However I doubt because I have more than just the sciatic pain going on. Anyway hoping the stimulator finds relief for you and let everyone know how you are doing with your recuperation. Have a Merry Christmas :circlelove:

Sure Heather!!!
 

How GREAT could that be?!?!?! We join stories demonstrating the force of growing numbers with success and you are urged if you will, when it feels right, to PM me so we can put heads together. Definitely, we need to get into The Back Letter. Other journals of a scientific bent would be grand, and articles written with subtle variations of originality could cover a large spectrum!!

Yes, yes, yes, yes,
Waiting to learn of your permanent self programming!!!!
Prayers,
Mark56:grouphug: