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Posted 10/20/2011 8:21 PM (GMT -5)
Hello all!

My name is Heather, and I have been lurking here for over a year...figured I'd dive in and introduce myself, especially since I feel like I know so many people here just by following their stories. My main reason for lurking was a need for insight into other's experiences with pain, while at the same time holding on to denial - as I thought/hoped/prayed that my pain would go away. I have finally come to grips that it is here to stay, so I figured it was time to come say hi.

A little about me. I am 33 years old, and am a researcher in a lab at a well-known cancer research center in Seattle WA. I have been married to my husband for 12 years, and we have no kids - just our two cats (which are like kids to us :))

My journey to chronic pain started 7 years ago, when I was found to have a pathologic fracture in the second tow of my left foot - due to a benign tumor called an aneurysmal bone cyst. This type of tumor is very rare, and ends up basically being a pressure-filled tumor full of blood that expands and/or destroys the bone around it. This was caught pretty early, and I had surgery to cut open the toe bone, scrape out the tumor, and pack the hole with a coral-based putty (hence my screen name). These types of tumors have a high recurrence rate...ranging from 40-70%, but they almost always recur within 2 years. So, after an easy surgery, and 2 years going by with no evidence of recurrence, I thought nothing of my toe for a long time.

Then....almost exactly 2 years ago (5 years out from the surgery) I started having really bad pain in my toe. I brushed it off, tried to ignore it, etc. After a month or two - the pain was bad enough that I knew the tumor must have come back. I had moved to a different state since my first surgery, so found a local podiatrist who x-ray'd my foot...and lo and behold the tumor was back with a vengance. It had gotten to the point that my entire bone was a fluid-filled cavity, and the tumor had expanded the bone to about twice its normal size. So - back to surgery. This time however, I never felt like I was recovering. My foot never stopped hurting and I found it very hard to walk any distance.

about 6 months after the second surgery, my pain sky-rocketted again. I had more MRIs and x-rays....and long story short, due to the tumor expanding the bone, my toe was no longer sitting in joint, and the motion of bending my toes whilst walking had torn my plantar plate. So, in January of this year, I was back in surgery - this time with incisions on both the top and bottom of my foot, to have a screw put in to re-anchor the plantar plate, and my toe pinned in order to fuse the joint. While in surgery, my doc discovered I had "the largest nerve he had ever seem" entrapped in the scar tissue from my previous surguries...so cut that out at the same time. For the first few months after surgery I was hopefull that everything would soon be back to normal soon. By this time, I had been on opiates for over a year - so in March my doc started tapering my meds. Everything went well at first when I was only tapering my IR med....but as soon as I started tapering my ER med, everything came crashing down.

Now, I am left with permanent nerve damage, and more pain than before the last surgery. Both my podiatrist and pain doc have thrown around the possibility of CRPS...but no one is ready to commit to that diagnosis, and I am not confident that I have all of the symptoms. My podiatrist had suspected things were amiss in the time frame between the two surgeries, and thankfully sent me to a pain management doc last fall, in order to get a better handle on my pain. That has been the only thing that has gotten me through this.

Now it has been around 3-4 months since I realized my pain wasn't going to go away. I have been taking Nucynta (100mg 4 x a day) and Opana ER (20mg 3 x a day) for awhile now. Nucynta has worked great for me, so we are going to eventually try switching to Nucynta ER and Opana IR eventually. Over the last few months we have discussed SCS as well. At this point I figure I have nothing to lose with the trial, so we've gotten the ball rolling. I have my pshych consult next week.

Anyway - sorry this is so long, but that's my story. I am hoping I can learn from you fine folks, give some feedback of my own, and have a community to lean on when the going gets rough!
Posted 10/20/2011 10:15 PM (GMT -5)
Hello Coraltoe, and welcome to the best cp forum ever.  I have a question for you the SCS you talk about, is that some kind of neuro stimulator to be installed, I ask because you mentioned a trial and that is the only thing I have ever heard of that required a trial and a psyc evaluation.  Whatever it is, I wish you all the luck in the world that it works for you and helps relieve your pain.

Toes are a funny thing huh?  You never think about how much you need them until something happens and you find yourself having to learn to walk in a very different way.  My issues are mainly in my lower back, but in 2007 I fell and somehow injured my right leg all the way down to my right toes.  I have neuropathy, at first my leg from my kneecap to my toes on my right foot felt like they were on fire.  The pain was unbearable, the pm doctor that was treating me for cp in my back was not at all interested in finding out what was going on or how to help me.  Finally, trying to get the pain to a bearable place, I accidently overdosed.  When I got out of the hospital the next morning, I found a new  pm doctor.

When I saw this doctor, which was only a day after I got out, I was in tears, when he explained to me what he though was going on and he could help, I really broke down.  True to his word, I received 3 injections over a 6 week period, 1 shot then I had to wait 2 weeks for the next.  By the time he was finished with the 2nd injection, the burning had all but stopped, by the 3rd it was gone, never to return.  I wanted to kiss him, but I knew that was not the thing to do.  But to this day, I remain grateful to him, I dont know what I would have done if I had not gone to this doctor.

Well as usual I have rambled about myself, I am sorry, I really am not a selfish person, but I alway manage to turn the conversation to me and my many trips thru chronic pain.

So, glad you are on board, good luck to you and let us know how things turn out, I promise I will not ramble about myself again.

Take care,, good luck

Kat

Posted 10/21/2011 10:22 AM (GMT -5)
Coraltoe

 

Welcome to the Healing Well Chronic Pain Forum, sense you said you have been lurking around the forum for over a year, you must reealize what a great place this is!  I am glad you finally desided to post and join our family! 

 

Boy it sounds like you have had one heck of a time with your toe!  It makes me hurt just reading about what you have went through!  Well we might not be able to take away your pain in your foot, but we can sure share in your misery and your, thoughts, feelings and frustrations that you are having with it. If nothing  else,........ as they say....misery loves company, and when your here you have lots and lots  of company!  You  are not alone anyway, and we do understand and can empathize with you! You have a family now that can share in your pain!

 

Again I welcome you to our forum!

 

Heather, your work as a Cancer Researcher, is so very important, I salute you for what you do!

 

White Beard

Posted 10/21/2011 10:24 AM (GMT -5)
Nice to meet you sure wish it was under better circumstances than chronic pain...
Many well wishes on the implanted stim, there are past postings on neuro stim devices,
you can go back and read thru those....
Welcome to our family as that's what we are like...Can you get a second opinion on your
foot pain...Might be something to consider...
Well wishes to you and keep us posted...
Posted 10/21/2011 11:24 AM (GMT -5)
Hi Heather, I too would like to say welcome to Healing Well's chronic pain forum. I am very glad that you decided to join in and tell your story. Every person here has a story to tell as to what has led them down the path of CP.

It sounds like you really have been put through the wringer with that toe. You are so right, I have never heard of your situation before either with that toe, all I can tell is I read a lot of pain in your post. I am glad that you are under the care of a PM dr, those guys really can help people out with CP if they are a good dr.

You mentioned nerve pain, has any of your drs ever tried you on the medications specifically geared towards nerve pain like, Cymbalta, Lyrica & Neurotin? I did not see those mentioned in your post. Its amazing how our standard pain meds have little effect on nerve pain. Nerve pain is a completely different animal all in itself.

I don't know if you have used the search feature here at the forum or not about SCS units, but you can find quite a bit of info here at the forum as they have been discussed quite a bit. I wish you well with your trial. Its said if there is a 50% reduction in the pain, then the trial is considered a success, I would not settle for anything less. I am assuming you have done your home work about these units.

Anyway, I wanted to pop on and tell you welcome aboard. Please let us know when your trial is scheduled. Take care.
Posted 10/21/2011 12:21 PM (GMT -5)
Thanks for the welcome everyone. I have searched through MANY a past posts on SCS....in fact that is where I have gotten the bulk of my information to convince myself it was worth trying :) Nothing is better than hearing feedback on something from others who have been through it.

Chartreux - I have had opinions from 4 different podiatrists and an orthopedic oncologist regarding my foot. The podiatrist who did the last surgery in January is Seattle's most well-respected foot specialist. He is the one that sent me to pain management last fall - thinking that they would be able to better control my pain. Both him and my pain doc were of the opinion that I likely had permanent nerve damage prior to the last surgery (due to the amount of pain I was in)....so in the end we all knew that this was a possibility.

straydog - nerve meds like those you listed are things that I have not tried yet, for a number of reasons. One is that I have side effects from what I am already taking, and have heard some horror stories around here of people feeling sick, drowsy, etc. The other is a little more silly...in that I already have gained weight due to being sedentary over the last two years, so don't want to pack on more pounds. That said - I will never know if it works or not until I try it - so it is still an option :) One of the reasons that my pain doc originally prescribed Nucynta was because my pain was nerve pain. I will never forget that day that I first tried it. Up until then NOTHING had touched my pain. Then 30min after taking my first Nucynta - my pain went down to the lowest it had been in a year - I cried. The other thing I have in my arsenal is a topical cream with ketamine, diclofenac, baclofen, teteracaine and 2 more things I can't remember off the top of my head. That has also helped my nerve pain a ton - has taken away alot of the sensitivity that I had on the top of my foot, and has taken away the lighting like electrical pain that I get through my toe.

In the end, I am young, and spent so much time in school/grad school to get where I am today - that I am not willing to give up my career. So, it means a balance between finding drugs that work, but with side effects that don't mess with my brain. Am hoping that the SCS will help in this regard as well :)
Posted 10/21/2011 1:29 PM (GMT -5)
Welcome to the forum Heather, I am also Heather! I am glad you have decided to post, I too was a lurker before I started posting.

It sounds like you are in the care of good doctors. I understand your hesitation on the nerve pain meds, but many people do not have bad side effects. The fact that Nucynta helped so much makes me think a nerve pain medication might help even more. I took gabapentin for a while and didn't experience any drowsiness or things like that. I did gain weight, but honestly weight gain is a pretty rare side effect with gabapentin. I guess I'm just lucky!
Posted 10/21/2011 2:15 PM (GMT -5)
It turns out that my middle name is Lynn as well :) Thanks for the welcome!
Posted 10/21/2011 6:10 PM (GMT -5)
Hi Heather Welcome to our chronic pain family. As you know by lurking, we're a very supportive and caring group of people. I'm glad that you decided to post as well.

I also have never heard of what happened to your toe. Ouch. I wish you good luck with your pain. It sounds like you have good doctors caring for you. Take care.

hugs
Loretta
Posted 10/21/2011 6:56 PM (GMT -5)
I have been taking Neurontin for 7 years to treat nerve pain in both feet and lower left leg. All the small fiber nerves in my feet and lower leg died or were damage because of my Crohn's disease. I take a moderate dose of Neurontin, 600 mg three times a day. Without the Neurontin the pain, burning and tingling in my feet makes me want to saw my feet off.

My prescribing doctor started me out very slowly, 100 mg at night for 3 days. Then we added another 100 mg in the AM for 3 days. I gradually built up until the pain was gone.

I have gained no weight while on this. In fact I have lost weight. I attribute the loss to being able to be more active. The Neurontin does not make me drowsy. It can cause drowsiness if one starts out at a higher dosage without gradually building up to it.

I take 50 mg of Tramadol with the Neurontin. Before this I could not stand to have anything touch ny feet - no socks, shoes, bed linens, etc. I can now where socks and shoes! Hope my story helps you.
Posted 10/21/2011 7:05 PM (GMT -5)
Heather,

Welcome aboard. I am a new guy to this board as well, after a long period of lurking. I read your story with interest, and sounds to me like you are doing all the right things to help yourself, and you sound pretty educated on your condition and situation. My oncologist likes the fact that I am a well informed prostate cancer patient, it makes his job easier, and he said he loves it when a patient is well in tune with their bodies and how they are feeling specifically. He said despite what some patients think, doctors aren't mind readers. The more detail and specifics you can give a doctor, the easier it is for the doctor to tune into one's situation. Makes sense to me.

Look forward to your future posts

David in SC
Posted 10/21/2011 8:45 PM (GMT -5)
Again - thank you everyone for the warm welcome. The few positive stories of nerve-pain meds some of you have described here is making me second guess my hesitations. Thanks for the feedback :)
Posted 10/22/2011 2:15 AM (GMT -5)
Welcome Heather I had a neuroma in my right foot at one time and i agree with other postings....Toes are ignored when they feel fine but when a painful situation happens ,owww!

I feel for you and I am glad that you are aware of your body. Please keep us updated on your condition.

Looking forward to getting to know you better.

Soft Hugs
Betsey
Posted 10/22/2011 9:31 AM (GMT -5)
Hi Heather and welcome to Healing Well, though like everyone else has said, I'm sorry that you've had reason to join us. You really have been through it. I'm sorry that CRPS is a possible on your diagnosis list - I have had CRPS for 12 years, very badly for four years, so if you have any questions or I can help in any way, please just ask. If there is a suspicion of CRPS, it's imperative that they do try to get you a definitive diagnosis - simply because CRPS needs such aggressive therapy.

I can appreciate your problem with medications - I am not the person I was without them, but they are necessary for me to get through the day with some illusion of quality of life. Not all nerve meds cause weight gain; one exception would be Topamax (topiramate).

I wish you all the very best with your SCS trial. It can be difficult to get good stimulation into your feet and toes as I know from experience (I've had my SCS for five years now), but be persistent and let your technician know exactly what you need. Sometimes it helps to take notes about what causes changes in stim pattern, that sort of thing, and this can help if deciding if the SCS is for you or not.

Any questions that I might be able to answer, please feel free to ask :)

Laura
Posted 10/22/2011 12:35 PM (GMT -5)
Thanks Laura....from what I have read about your story, you are an inspiration to us all with what you have been through. Does your stim reach your toes? Because my pain is pretty much isolated to my forefoot, my doc is going to do a retrograde implantation of the perc leads. She says she has done this on a few others with CRPS in their feet, and with good success - so here's to hoping.

My main question that I seem to not be able to get a firm answer to is what type of lead is best. My pain doc is doing perc leads, but I am young, and would give ANYTHING to be able to be a little more active - so am wondering if the paddles would be better for me? Along these lines I have had a previous laminectomy for a disc issue over 10 years ago....if I choose to go the paddle route, is it possible that they could use the hole that is already there? I have my phsych eval next Wednesday, and then see my pain doc the following week - so not sure how long it will take to get to the trial.
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