So glad you are getting positive results. Keep on going.

dear saffy
hope all is getting better
i remember how it was for you
so sorry
it does seem as though many stories i read
many have problems with infection
that screws up so many things
anywho, you take care and
kick butt

much love
happy holidays
a friend

someone who cares

my trial scs was very successful!
 

I had the st jude brand scs and it really helped reduce my pain level!

The trial was 10/29-11/2. I truly wanted to keep the unit although I would miss showers for the rest of my life!

I am 51 and have excruciating small fiber neuropathy in both feet. My Dr also believes that I have some other unspecific neuropathy or erythromelalgia or RSD. Ive had this pain for 2 yrs and have had probably 25 different tests and procedures, including 6 months of sympathetic nerve blocks (had 2 hrs of pain relief).

So having 50+% relief in the trial was fabulous! Only problem was the day I had trial scs removed my painnmgt Dr gave his notice the same daynand he couldn't fit my surgery into his schedule before leaving.

Also this Dr wasn't allowed to tell me where he was going. So my st jude reps had to find me another Dr in the Atlanta area who would do the surgery. I was not able to get into new Dr for 1 wk. He had to have a consultation with me and my st jude Rep came too, bringing my xray. He couldn't fit me in until 12/19 so my perm unit wont be installed for 7 wks after trial! I'm trying sohard to ignore my worries and concerns.

I need to try to 'get back to my optimistic self or at least not the negative Nellie ive become.

Brenda

Hi Brenda and Welcome!!
 

We are thrilled, of course, to have you come along and post, most especially regarding a very positive Trial outcome!!!! YAY!!!

Now to the movement of your original doctor. Partnership agreements be darned and full speed ahead. Even if the agreements of the practitioners were constructed to inhibit competition and freedom of access by relying patients..... contact the licensing entity in your state and ask whether the trusted physician relocated to another locale within your state [maybe even your metro area, else the dark harbingers of anti-competitiveness would not have descended to shroud doctor from patient].

Doc may have been forbidden by some agreement to tell you the next destination, BUT, if that profession is anything like mine, there is a licensing and practice imperative which compels said moving doctor to very quickly file notice of relocation with the licensing state authority. They will usually share such information with an inquiring member of the general public, because promotion of access to medical care and continuity is usually a governing goal. If you are able to access information that way, your tracking of doc and asking whether you may continue as a patient may well produce a rewarding reconnection which MAY provide renewal of a more realistic and timely treatment. Doc knows your case, and I absolutely hope and pray your dectective work may produce good fruit.

Prayin for ya,
Mark56:hug::grouphug:

Hey there Brenda
 

Hello Brenda!
 

WELCOME ABOARD! :hug:

Thank you for sharing your experience!
So sorry you are battling this nasty neuropathy/RSD as well. Such a frustrating condition to say the least.

You certainly are not alone and I'm so glad you found us! :)
You'll find the support here to be fantastic and we'd love to have you stick around to let us know how this goes for you.
I know the long wait between the trial and permanant can seem like torcher. Hang in there tho, as I'm sure it'll be well worth it.
As far as the worries and fear of the unknown, it's completely normal. Stick with us and you won't feel alone in this. We are constantly lifting one another up throughout the gammet of emotions that tend to go along with this. You'll be fine! :hug: and NO, you are not a negative Nellie! :rolleyes:

I'm glad your Rep showed up for the consultation with your new Dr. So, at least it's not like having to 'start over'. Hopefully this doc has done many of these implants and you'll feel confident in him.

How are your pain levels since having the trial taken away? Hopefully you have ample medication on hand to use as ammunition!

Feel free to ask anything!

Caring,
Rae
:grouphug:

smart and wise
information a powerful
thing

Another thought. The medical grapevine is not known for it's discretion. If you know any of the surgical nurses where the doc practiced, they will most likely have the info you want and spill the beans. I am betting at least one of the reps knows too. Getting the info off the record would be more difficult. You can also do a simple web search by name. If he has relocated in a nearby community, there most likely will be an announcement in the newspaper. That will be on the internet.

A number of years ago, I needed to track down a former pain doc that I had issues with.............me and hundreds of former patients and their attorneys. This guy gave the word "slick" new meaning as he moved about every six months, practiced in a number of specialties, and used about a half dozen variations of his legal name. I was always about six months behind him but after two years, I found him practicing in a small town on the other side of the country. I kept doing web searches and finally found a recent announcement of a new practice opening and the doctor's name was a spot on.

Hopefully this doctor will work out and you will be experiencing blessed relief soon. Hugz.

YEE HAW Andy!!
 

I did it again.... went to the brickyard for a couple of bricks and overloaded the wagon.....

So Andy, you get the gold star for easy readin' and move the head of the class for figuring out the gobbledygook I wrote!!!

For everyone else.......

PLEASE FORGIVE ME MY SPONGY BRAIN!!!!!!Too much mumbo jumbo. I should not have taken the class in Mumbo Jumbo. I knew it when I did it and would not listen........

THIS is the perfect example why D.C. is so upside down and confused, because of all of the mumbo jumbo spillers elected or rather "bought" into the system there.......

nuff said,
sigh,
Mark56:o

thanks!
 

Hey everyone! Thanks for the warm welcome. I appreciate all the advice. I was able to find my old pain mgt Dr and I have an appt Jan 3rd. He is going to be my post op and future pain mgt Dr. Yay! !!! I'm not even considering him for the surgery due to time constraints. The replacement Dr fit me into his busy schedule and insurance already approved surgery thru his practice.

I do want my old Dr to help me slowly get weaned off all or some of my pain meds. I'm currently on very high doses of methadone, amitryptilene, lyrica and cymbalta just to try to handle pain, plus 4 advil every 4 hrs. And most evenings I am still in horrible aching, stabbing, cramping, burning pain.

I have to keep my feet elevated at all times or the pain starts earlier and stronger. My feet turn purple when they dangle and color = pain.

Oops, I pulled a "Mark56" aka "Brenda Ingram" by going into much more detail than is required!! LOL!! Mark, ive done that all my life and always believed that this "additional info " helped me become an excellent communicator. Unfortunately, my high doses of meds have really messed with my mental acuity and I repeat myself then I forget everything! Does this happen to anyone else?

What were we dikscussing? Oh yeah. I cant spell. I repeat myself endlessly, going over the same material over and over. I am redundant. Did I mention I forget everything?

Ok I'm done playing. Or am I? I cant make simple decisions.

Goodbye? :eek: