[Teresa Marie]

Hi my Fellow Friends at Neurotalk,
I have been a visitor to this site for the past few months and so far have just read stories about others struggle to maintain lives with RSD. While I've made a few posts I have not commented much...feeling too new to do anything but get to know the site. Now I feel confident in sharing my story.

In August of 2005 I woke up to pain in my feet. Pain that had no reason to be there. Realizing the pain wasn't going away I began popping ibuprofen to try to reduce it. Not only didn't it go away it got worse! Great! I had to go back to school the next week to prepare for the new year as an 8th gr. Algebra teacher and wondered why this cropped up now when it had the whole summer to come and go. Yikes! By the time I left the cabin to prepare for the new year I could hardly walk for the pain in my feet. I couldn't even hop!

So I started the new year in pain that only increased with each day. I saw my general physician who thought I should see a foot doc. So off to the podiatrist I went. By this time it was almost time for the school year to begin and I was getting desperate. The podiatrist thought I had tarsel tunnel syndrome of the feet/ankles and I would need to have surgery to relieve the pain. Well, having never been a fan of surgery I asked my general physician for a second opinion at Mayo Clinic in Roch, MN.

I spent the next four months going from one specialist to another. Test after test, going from crutches at the beginning of school to a wheelchair by the beginning of November. Nothing made sense and I was going out of my mind with the raw, ragged, stabbing, bed of nails pain that I now had all of the time. I refused any medication until these special doctors at the Mayo Clinic could find a diagnosis. Needing my job and insurance I had to continue to work. it wasn't until I saw one doctor who suggested I focused on getting better and signed a note that said I would be unable to return to work for a few weeks. That was Dec 23, 2011. At the time I didn't know it, but I would not return to work that school year or for the next six either.

After that I finally was able to see the neurologist and the foot and ankle specialist (they were so booked that there was no way I could get in before that time). The neurologist said, "It is not neurologically based" and that I should begin walking again w/o the wheelchair. Ohhh, every footstep was agony. Finally I got in to see that foot and ankle specialist. I rejected the idea to just put a shot into my feet to make them feel better and challenged the doctor to look closer. He thought a few moments and then ordered the test that has changed my life. He ordered a nuclear bone scan of my feet. After the scan I met with the doctor. He came in, showed me the scan results on the computer, and while tracking a point on my foot he explained about the reasons why my foot looked like cottage cheese. Then all at once that point disappeared. The point was not a hole in my bone but a nerve misfiring. The doctor turned to me and said that I had Reflex Sympathetic Dystrophy. His fellow explained the disease to me and said I would be forwarded to the pain specialist for help with this very misunderstood disease. One that is not curable but only managed. My heart fell 10 stories. After that it was years of pain blocks, physical therapy, pain medications, pain clinics, pool therapy and a bunch of tests which included several EMG's. The pain began to migrate. First from the foot to the ankle. Then from the ankle to the knee, and then up to my hips and lastly to my arm/neck and hands.

This June (2011) I found myself confined to my recliner at our lake cabin with my feet up as high as I could get them, my knee up on a pillow and each of my hands on pillows as well. After considering the pain that spiked so high I couldn't rate it I finally came to the conclusion it was time to follow-up with the doctor about a spinal cord stimulator. From there I had the trial implant on June 20. It went so wonderful I cried for an entire day--tears of joy.

Today, almost exactly 6 years to the date I had a Boston Scientific Precision spinal cord stimulator placed into my spine with the battery inserted in my right butt cheek. I'm sitting in my recliner now without pain in my lower half of my body for the first time since that fatal August day. For the next 6 months I will continue to take the Lyrica, Cymbalta, Trazadone, Celebrex and Rinitadine and then at that time I will try to tapper off my medications as much as the pain will allow.

The spinal cord stimulator trial and surgery were not as painful as I thought. However, I realized the trauma it inflicted on my back after the trial was taken out to be considerable. The doctor recommended a minimum of 3 weeks before implanting the final stim. Boy, did he get that right! The two incisions on my back are about 3-1/2 to 4 inches long each--one on the lower part of my spine and the other down about 2 inches and to the right about 4 inches. They should heal like a fine line. No showering for 4 days (Yikes) and no submersing for 4 to 6 weeks.

So, there it is. My story. It only took up 8 inches of typing but a lifetime's worth of agonizing pain. Now I'm onto part 2 of my story; one which has yet to be played out. Thank you for reading about me. Let me know if I can help in any way. ~Teresa Marie

[Mark56]

You and I share a similar path to management of pain, to wit: the implant of a Boston Scientific Precision Plus SCS device. I am now a year plus out from my implant, and thrilled with my results to date.

My implant occurred 30 June 2010, over six years after a serious auto wreck which reduced me to a pile of flesh in constant agony. 28 surgeries later, I received the Boston Sci solution to help manage the permanent nerve injury pain with which I was left, and my report is glowing. I withdrew from all pain management meds in August and September of 2010 following a process managed by my Physiatrist, a doc whom I now count among my friends.

Your story is inspirational and a blessing to share, so thank you very much bringing your path to our knowledge, knowing as well if you have issues along the way, we are quite a family of caring concerned people here willing and ready to reply.

May all go well and be well with your pain management, your follow on physical therapy [anyway I had much of that], and the task of withdrawal. It will not be easy, and meds for withdrawal will be prescribed to aid you in attaining your goal.

Blessings on you Marie!
Mark56

[Teresa Marie]

Hi Mark56

Thanks for sharing your story~you are right, it is all worth it! The pain I had in my feet/knees/hips was so bad I usually had to meditate each night before I went to bed just to stay normal or should I say close to normal .

Today my butt cheek is going crazy, probably because I backed up into a door knob yesterday...no kidding! I know I'll need help with the coming down off meds as I have been on them for 6 years now. Yes! I can do anything now that the pain is gone. And I mean that...I DO NOT FEEL ANY PAIN!!!

So, thanks again to you Mark56 for posting. Hope to visit again soon.

Teresa Marie

[Mark56]

Yep, Marie, prunes, the amazing fruit. Thought I hated them, but when coming off the drugs, couldn't go,,,,, for all of the trying. Of course, then doc said, ahhhh but you needed a med for that, another script; then, when the dam broke, it broke for good and it was Montezuma's Revenge with emphasis on revenge..... doc said, ahhhh but there is a med for that, another script...... but the trots lasted......... and lasted........ and lasted after the poison of the morphine and other opiates was out of my system.

So, be prepared to take the withdrawal slowly, and ask your doc for a script to aid in the more banal things of life so you are more prepared than waiting to remind them you might, just might need a bit of something.

I just LOVE that thing about NO PAIN. Hallelujah!!!!!zz

Toot, toot!!
Mark56

[Rrae]

Thank you so much for sharing your story!
What a heartwrenching ordeal you've been through.
I'm so glad you decided to start a thread of your own....and I'm sure you've realized by now that we are like a family here. Before I knew of Neurotalk, the only place to get any feedback was searching endlessly online for information sites....very impersonal. RSD can be a very 'lonely' condition, as not many people comprehend what it is. Misunderstood - as you said.
I felt very alone when my battle started almost 7 years ago.

It'll be great to see your posts! You've got a very bright outlook, you are a fighter and a survivor.

Welcome! You've got friends!
Rae

[Teresa Marie]

Hi All

I haven't been posting lately as I had my SCS implant on July 13, 2011. Wow, what an interesting surgery and fantastic results for me!

Presently I am 3 weeks out of the surgery and only have pain in the part where the battery was placed (right butt cheek, 6 inches down from waist). And, when I have that pain it is just plain ugly, burning and ugly! This only happens now about 3-4 times a day. Otherwise, everything feels good. I only need the lower end of the stimulation at night and during the day the upper side of the lowest level to keep my pain (below the waist) at bay!

Today I walked around and felt no pain...what a beautiful feeling! I so happy I could kiss everyone

I'm interest in the PT that I will eventually get into. When do you start? Other than walking I'm afraid to do much. I do NOT want the leads to migrate. I was told as Mark56 said not do bend. lift, twist, reach, or exercise for 6 weeks. So that leaves 3 weeks. Dr. Tim Laymer (Mayo Clinic Rochester MN) is a great doctor! He is just fun and happy. He doesn't act like a doc. as he is so supportive of his staff.

So any suggestions for PT? And just a general update on how I'm doing!

Thanks for such a nice welcome Rae!

Teresa Marie

[Mark56]

You've joined the buzzers club!! So glad to read that it has gone well for you to date and that you are finding RELIEF!!

Regarding PT, your doc will likely prescribe it [either the surgeon or your pain doc] and it will be best of all if the therapy clinic you select has both the gym with its exercise whatnots and stretching/massage tables ALONG with the warm therapy pool in which you would be directed to exercise all for the sake of restoring core strength while keeping those muscles happy. I hope such a place exists in your area.

In the meantime, those walks you mention are just what the doctor prescribed, I imagine!!

Prayin all will be well,
Mark56

[Pizzle]

I love reading all your stories and what how you all feel makes me feel good. I am 35 and I have SFN. I was just told about the SCS by my pain Dr. (who I just saw for the first time) he said it only works 50-60% for SFN!! He obviously has never been in chronic pain.....ONLY 50-60% um, that sounds good to me. But I am afraid that the SCS doesn't work for SFN??!!
Do you know anyone that has SFN and has good success with it?
I am just keeping a smile on my face and staying as positive as I can, I have a wonderful husband and a 3 year old to take care of....I am so sick of being the "sick" one.

Thank you all for your advise!!
Renee

[JoanB]

Hi Teresa Marie, as you see, I did find your thread after reading your post on the other one. I will be another person here following your story. I'm so glad that so far things are looking up for you.

And pizzle, I think that Rrae has had good pain relief for PN with a SCS implant, but can't recall if she had SFN or not. Also pooh...because I asked the same question not long ago on the other thread where you posted.

[Rrae]

Indeed the SCS works wonders for my PN in both legs. Jackie and I are very similar in our conditions - it's our BACKS that are killing us

I'm very grateful for my SCS. I'm so very happy to hear how well you are doing with yours - and only 3 wks out of surgery! WOW

It's good that you are being so careful with your physical activity. Take it from me, it's not good to get overly ambitious after having the implant.... I did have one lead migrate due to bending and lifting. Bad Bad Rae.
Instead of having the lead fixed, we ended up just taking it out because I'm doing so well with just ONE lead. Go figure.

Anyway, congrats on your successful surgery!

Rae