St Jude SCS
 

Just wondering if anyone here has the St. Jude SCS??

If so, does it help lumbar/lower body---leg and foot pain---?
This is where I would need mine implanted.

What is your percentage of relief?

I am awaiting consultation to have the trial/temporary implant.

Any information good or bad will be greatly appreciated!!

Thank you...
http://www.andyroddick.com/forum/Smi...ault/sad11.gif
Abbie

St Jude
 

Dear Abbie-

I was originally supposed to receive the ANS EON mini by St Jude and had researched it thoroughly in advance of showing up for my Trial Surgery only to learn within the hour prior to surgery that this smiley faced young man walked into my prep room to introduce himself as my rep and, oh, by the way he was from Boston Scientific. I was suddenly in lawyer mode about to go through the roof and cross examined the fellow before anyone proceeded to stick something into my spinal cord space.......

That behind me, I had performed such complete research on the St Jude model, I knew going in it was similar in many respects to the Boston Sci unit with which I was implanted. In my doc's office I had actually seen the specimen implant, realized it was about the size of the Boston Sci, which is about the size of a silver dollar by diameter and three thicknesses thereof. The wiring harness between emplaced computer/battery unit consisted of two wires which would connect to the inserted leads or paddles, depending on the selection made by you and your surgeon. The recharging unit was trasndermal, similar to my recharger for Boston Sci [that reminds me, I need to recharge this evening]. The remote control was a radio freq unit similar to a TV remote, again like the unit I have from the competitor.

I watched the DVD information disc my doc had for me pre-Trial, read every word online I could find, then resorted to speaking with a couple of actual patient ambassadors......... Now THIS is where St Judes has Boston Sci all beat in the marketplace. They planned and provided actual patients for contact via telephone or email regarding questions. THIS REALLY IMPRESSED ME, and you should take advantage of it as well. Both of the patients with whom I spoke were frank and forthcoming even to the point to discussing what about taking care of toilet needs post surgery. Boston Sci has earned an F on this point, even though I volunteered to aid them in this way, I believe they are far more concerned with selling shares in their company than patient care or preparation. Gee, my blog thread has seemingly become the source for physicians to refer their patients if they are considering Boston Sci....... not so good for an up and coming durable medical equipment manufacturer.

St Judes regarding the coverage of lower body trauma and nerve issues was going to be the same as I have come to experience with Boston Sci. The placement of the leads or paddles has everything to do with the targeting of the nerve bundles which address the extremities desired. Regarding myself, I have permanent nerve damage from L5-S1 throughout my entire legs. The surgeons selected T8-T9 space as the go to point for insertion as it would assure potentiality for coverage of the parasthesia affect [the numbing as it were of the nerve desired]. I have achieved programmatically coverage from about my waist down. Certainly, the St Judes model should be able to address this if surgeons, rep, and patient are all on the same page.

One cool thing I give an A+ for my rep was that he intuited my understanding around computers, so he sat me in front of a computer interfaced with my implant and guided me through programming my own bionics. SO MANY of the complaints I have read registered on this topic and the follow on tweaking and tweaking sessions that go on could be avoided resulting in diminished expense, cash outlay, insurance involvement if the patients were ALL allowed to program, with guidance, their own bionics. Use of the stim is hyper-subjective and ONLY the patient knows and understands how certain stim affects portions of their target zone, and whether it is effective or pain producing. If you have any control over this aspect, demand personal involvement with hands on control of the programming. I have four programs in my unit which I established and have never needed a tweak session since my permanent implant surgery 30 June 2010.

From what I understand, the durability and reliability of both products are about the same, and my surgeon implants several different models of product depending on pain doc reference, patient choice, and his professional opinion.

ASK questions of your docs, both pain doc and surgeon to get the most up to date information. Ask to speak with patients implanted with the device if you can, and definitely avail of the St Judes patient ambassador program. The video is a lot of hype and sales. The moments speaking one on one with a patient who has received the unit is GOLDEN.

May you truly be blessed with your experience as I have been,
Prayin,
Mark56:grouphug:

Hi Abbie
 

Hi

I have a St Jude Ans SCS. It was implanted in August 2010

I have Failed Back Syndrome. I have pain in my lower lumbar area and down my legs. The SCS works great on my legs but I have trouble trying to get it to work on my lower back. This might happen if I lay down with the SCS turned up fully. But you say for your legs and feet well im surethis could help as Mark also said.

Before I was implanted I too was sent a video. This was from the actual company and naturally they were very one-sided. However, I do find their Reps to be very good particularly my last Rep as he seemed to hit the right places for my legs while walking.

I live in Ireland and the Reps come from the UK so I have to occasionally wait for Appointments for reprogramming. But if you are from the US it seems to be so much easier as they are based there in Texas.

I have the leads placed in my back with a small box in my left upper butt!!
I did have a problem with my internal battery not recharging back in Feb of this year but thankfully that was addressed with a new one being implanted and the company were rapid in sorting that out. I was only about 10 days waiting for that operation.

Well Abbie I'm not sure what else I can help you with but you ask me whatever you want and I will try my best to answer your queries ok

Take care

Jackie :)

Thank you Mark and Jackiey!!


I have RSD full body but my doc is mainly concerned with having the SCS to "treat" my lower body. My pain is a constant 9+... often a 10. I've been on numerous pain medicines.... many did nothing... right now I'm on Dilaudid... it seems to be working but I have to take it so often to get any relief.

I don't know what to expect from an SCS... I don't know if it will take my pain away??? OR will it just lower my pain???

I've had tens units and tried the Dynatron STS which both caused my pain to increase and spread!!!!!! And those were electric stimulation on the outside of my body... So I am scared beyond words to have electric stimulation on the inside of my body?!?!?!?!

St. Jude SCS
 

Hi guys,

I've never heard ot eh St Jude SCS and naturally I don't know anything about it.

I wonder if we start a tread to get a picture of what type of SCS those of us on here have? I'd be certainly interested

Abbie, I hope what ever you decide to have implanted I hope it works out well or you and you don't have to go through the mill for anything else afterwards.

Keep in touch,

All the best, Sinéad xxx :hug:

RSD and SCS
 

Dear Abbie, as I have written in the RSD Forum on behalf of my Sis Terri, who has full body RSD. Her case advanced too far too rapidly for docs to even consider SCS as a paliative measure for her. She has had bilateral amputations of the legs above the knees and now feels the phantom pain of the missing limbs due to the brain and nervous system trick played on the soul who must bear such treatment. She exists now on Morphine and Fentanyl in such large doses as to pretty much keep her "dumbed to the pain."

Her matter I bring not as a means to frighten, but with hope you are a patient whose situation has been caught early enough that SCS might, just MIGHT provide some stime relief from the wickedness of nervous system pain. I know that monster so well personally in my body, that I finally looked forward to the Trial implant as you too will approach. That is a temporary placement of leads in the spinal cord space connected to the St Jude works you will wear around your waist for up to one week to learn whether ANT benefit comes to you through it. At the end of the Trial period you will either KNOW SCS is for you, or you will be beggin for its removal. As for me, I feared the appointment to remove the Trial leads because so much relief had come my way from the mere Trial episode.

Prayin for ya,
Mark56:hug:z

Abbie
 

My pain doc is using more and more St Judes per his nurses.

Abbie...
 

I'm so sorry you are dealing with full-body RSD.
Whether or not to go with SCS is certainly a tough call to make. If your Dr thinks there might be a chance at improving your quality of life via this unit, and if you have confidence in him, I agree with Mark - go for the trial, even if for just a couple of days.

Please let us know which way you go with this, ok.
There have been several with RSD comment on these units and I've seen testimonies go both ways.
It's such an individualized form of pain management, so there's really no way to know for sure. I think I'd lean toward giving it a good test run, especially if Dr thinks this could benefit you. Perhaps the stimulation it offers will come as a welcome soothing relief....and reduce the level of your pain to half of what you currently suffer.
My unit covers the same areas you describe and I've been able to lower the amount pain pills. I'd say approx 75% relief. I still wear Fentanyl patches (50mcg) for a steady flow of pain relief, but it sure beats having to wear 100 mcg patches and take all the hardcore pills all the time. It was putting my liver and kidneys thru the ringer!

You are in my prayers,

:hug: Rae :hug:

Thank you Mark!! I appreaciate the eyeopener... I've been through the Fentanyl and the Morphine... both SEVERELY allergic -- Anaphylactic swelling of throat and lungs.

Thank you Sophie & Pooh for your kind words!!!

Thank you Rrae for your understanding!!

I guess the first step it to go to the consultation with the Doc.. then decide.

Which has yet to be scheduled...they are going to call me...guess they have to check with my insurance first

My Neurologist thinks the SCS may be of benefit but understands my fears... he did re-iterate to me that is why they do a trial first.

I am fearful that it won't work.... But MOSTLY that it will add to the pain!!! I can't take any more pain!!!! I stub my toe and feel it in my scalp!!!! <--- No joking.

Well I better log of... it's late...
:hug:
Abbie

Consultation scheduled for the end of the month....

Will let you know how it goes....

Thanks again!!
:hug:

Great news
 

Abbie Im so glad you finally have a date for your consultation!

Just go with the flow with the trial and if it benefits you then its onwards and upwards... I really hope that you get the relief you so deserve!

Keep us updated Abbie

Take care

Jackie:hug:

What does the SCS feel like
 

I've looked at all of the information they gave me in the packet but nowhere does it address the question of what kind of sensation does the SCS send through the spinal cord and body...

Is it a electric pulse sensation like a TENS Unit?
Is it a constant electric sensation?
Is it a vibrating sensation?

I ask because I can feel the smallest of electrical sensations. Electric blankets and heating pads drive me crazy---OUCH!!!

I can even feel the electricity just before the motor to the furnace or air conditioner kicks on.... OUCH!!!

If I go into a building where a machine is vibrating.... I can not stand it!!! It sends the vibrations right through my shoes and into my body---OUCH!!


I'm sorry for asking so many questions...
Thanks,
Abbie

Sensation
 

Howdy Abbie-

Sensation depends upon the unit..... If you travel to the UK, you may ask to receive a Nevro device which provides relief with no sensation. It is not approved for use in the US yet.

All brands of which I am aware in the US provide a kind of a tingling, shivering sensation. I have likened my Boston Scientific to the sensation I experience when shivering, and in winter season, it tends to heighten my feeling of being "cold" and I wear extra stuff or cover up when at home so as to try to be less "cold." I feel that is a pretty good trade off for the pain I was enduring before!

Now..... as to your questions..... isn't the gainful imparting of information one of the very basic of missions of this site? You can Never ask too many questions, AND, remember when preparing for your next doc appointment to write questions down to take them with you both to address things you want to know from the doc and to assure it is not a quick "thanks for coming" style appointment where you feel "but if I had asked..........."

Have a blessed weekend,
Mark56:grouphug:

Hi Abbie
 

No such thing as too many Q's! The more the better. It seems like Dr offices tend not to give very much info. At least that's how it was for me. It seems as tho they become complacent because they are always doing this procedure. I think they kind of forget that this is something brand new to us and somewhat bizarre! I spent SO much time online trying to find out stuff about the SCS - boy was I glad for this site! Before we got this little forum, the RSD folks were very helpful in sharing their experiences and suggestions.
I am ever grateful for that.

AS far as the sensation... they can program so many different types of settings. And to boot, you will have the option of turning your amplitude higher or lower. To me it kinda feels a little bit like it does when your foot or leg has been asleep. That strange tingling when it wakes up.
Like Mark said, it's a wonderful tradeoff from the burning pain. And knowing that you have control over how much stimulation you get, makes it all the better. Sometimes it starts feeling a bit aggravating, so I turn it way down. In the mornings my pain level seems to shoot higher, so I turn UP the buzz.
Most of the time tho, I don't even realize it's on. And like Jackie has stated, it's VERY soothing at the end of the day to put my feet up, relax, and enjoy the stimulation.
The trial period is the perfect opportunity to play with the settings and decide which ones work best for you.
Since you are so sensitive to electronic transmissions, you'd probably do better with a lower setting and with the amplitude/pulse set at low. It can feel like a soft 'buzzing' with the pulse speed higher, or it'll feel more like a 'thumping' if you turn down the amplitude/pulse width.
Kind of an 'acquired' taste so to speak, but ANYthing is better than the constant pain.

I almost wanna say it's pretty similar to the TENs unit, but I haven't used one of those units in a long long time, so not really sure.

How do you fare with the TENs unit? Is that type of stimulation too intense for you?
Do you describe your pain as burning?

I can't handle the TENS unit for even a minute!! I played with all of the possible settings and levels with all possible combinations.

With the TENS unit on it feels as though the part of my body where the pads are.... my body is going to burst into flames...it feels as though there is blood running down the outside of my body and my body CRAMPS up so very BAD!!


I describe my pain as---COLD BURNING PAIN!!! To describe it I say it feels like I've been left outside in below zero temperature then going inside and immediately taking a HOT shower. That BURNING, TINGLING sensation that hurts so much you can barely handle being in the water.

Another description I use is---you know that feeling you get when you hit your thumb with a hammer... that instant pain but it never eases or goes away.

:plain:
Abbie

Shucks, Abbie :( The way you describe your pain - I'm so sorry!
That sounds like a level 10 acute pain to me! I sure hope it's not constantly like that. How do you cope!

I know that 'icey/hot' pain you describe. It's a terrible feeling, sorta like being on the INside of my skin tryin desperately to crawl out! :eek:

I sure hope something can be done about this. Your hypersensitivity certainly might pose a problem. I'm anxious to know what your Dr will have to say when you tell him this at you upcoming consultation. I hope there is a way to work around this.

Oh Abbie
 

Im so so sorry to hear that you have just pain:eek:it certainly sounds horrendous!!

My SCS is a St Judes....now the sensations I get when I turn up my SCS is similiar to when you would sit for a while and your leg goes 'dead' that when you stand up you feel it like pins and needles. When I was getting my stim programmed there were a range of different sensations. I remember there was one that was more a 'thump' 'thump' 'thump'....sensation which didnt help me at all in fact it drove my pain worse!!!.....I know there are lots of different sensations with my unit, some fast and some slower which makes the actual sensations feel different to one another. Ive mine on the 'pins and needles' sensations as thats the one I find more comfortable.

I remember prior to my implant I did have an opportunity to use a TENS machine on my back for a trial. Well that just aggravated my back and pain in my legs, so I had to give it back, I got no relief whatsoever. But the SCS is certainly a small improvement on having nothing.

From what you are saying Abbie Im wondering if you will be able to withstand these sensations especially if you say how sensitive you are! BUT........thats the beauty of having a trial first before they actually plant the permanent one!!!

Good luck and let us know how you get on

Jackie:hug:

Thank you for understanding...[quote=Rrae;804335]That sounds like a level 10 acute pain to me! I sure hope it's not constantly like that. It is CONSTANT!!! How do you cope! I cope the best I can with medicines and I sleep A LOT actually I think I am more or less passed out. If I forget to take a dose of medicine I get really sick.

I know that 'icey/hot' pain you describe. It's a terrible feeling, sorta like being on the INside of my skin tryin desperately to crawl out! :eek: Exactly!!

I sure hope something can be done about this. Your hypersensitivity certainly might pose a problem. I'm anxious to know what your Dr will have to say when you tell him this at you upcoming consultation. I hope there is a way to work around this. I have a fear that he's going to say that it's not going to work. or that it will add pain. [/quote]

Dear Abbie
 

Burning, burning, burning..... oh how well I know burning, and that sensation of not wanting anything on my feet or legs. Not being a skirt kind of guy myself, I tend to wear shorts at home ALL of the time, and less when in the privacy of our room with door closed. The first thing I like to do is get the stuff off of my feet. Pre-SCS the burning was a searing burning which along with spasms which lingered LONG after my fusion brought me to tears just way too much. I was the guy who used to sing with the worship team and now lay on the pew in church, head on my wife's lap and tears rolling down my cheeks [and this was not due to a heightened spiritual experience].

Icy burning is a sensation I do not know, but I am glad you and Rrae connected on that. She is one close supportive leader in this subforum and we are blessed, all of us, to have her, with caring, wit, smilies which pull a grin even out of the dead, and information beyond the far reaches of her left pocket.

I pray for you, Abbie, that you do find the right and special treatment which will bring peace to your body, mind, and spirit.
Caring,
Mark56:grouphug:

Describing Pain
 

I think I know that icy burning feeling. Most of the time it's just plain old burning for me, but in the colder months, I think I get what you're describing.

I'm so sorry that you are having so much pain and really hope that somehow you can find some relief, Abbie.:hug:

Burning aarrgghhh!!!
 

Oh the burning is just awful....... at first when it happened to me I thought Id gone mad!!! how could my leg be burning, its so cold :eek: and it has never left me. The SCS tries its best to mask it at times but I have to keep rubbing my legs to get that awful feeling out of them.

Abbie I hope you get relief asap :hug:

I also have the deep bone aching pain. Where it feels like my bones are going to EXPLODE!!!!

This goes hand in hand 24/7 with with the burning/freezing pain.

I have severe muscle cramping and spasms. I often sit and watch my muscles moving somewhere in my body when I am not moving.

The softest of touch is very painful!!! I also have what I call a delayed pain sensation...where if I touch something or something touches me it may not hurt instantly...but a few moments later the pain is intense!!!

I never have ANY moments where my pain is below a 9+ even with the pain medication.

Because so much is happening all at once it is so hard for me to describe ALL that I am feeling. I should probably write all of this down for the doc I am meeting for the consultation?

I AM SO SCARED!!!! I HAVE A LUMP IN MY THROAT AND I FIND MYSELF CRYING SO MUCH. I HAVE NEVER HAD ANY KIND OF SURGERY.

:(
Abbie

Abbie, I understand
 

Except for the freezing part, I have been there known that. Print it out. You have already written it. Take it to your doc with you. Let them know what is happening to you. There is a reason. Diagnostics CAN reveal, maybe not right now, but soon. Convince doc you have GOT to have some relief. My God, how I tried. Then the screaming came, the rhythmic so closely spaced spasms I thought I was going crazy...... screaming..... then things began to shut down...

IF and only IF doc believes clinically through diagnostics there can be a cause demonstrated and thus recommends to you treatment which may help, THEN and only THEN is there a discussion about scalpels. Surgery is usually not the first course on the menu.

This may ring hollow right now as you are feeling so desperate, but we ALL CARE what is going on with you. Just a while longer, and you can take that printout to your doc. Let them know. Take your spouse, significant other, SOMEONE with you who can vouch for what has been going on. Was there a reason why my wife went with me to all of those appointments besides that I was in such pain I could not drive? She was my witness. She could provide credibility. I was never and am not now a surgery junkie.... they do exist. But, by the time things were shutting down she PUSHED and got me in. I was too busy screaming.

Hugs beyond measure, prayers beyond understanding,
Mark56:hug:z

At my last appointment I told my Neurologist that I wanted to call him and beg him to cut off my legs...that's how bad the pain had been.

Right now I want to crawl out of my skin!!! All of it!!!! The temp outside is 57 F. It's supposed to get down to 49 with a small chance of rain.

Oh how I love what the weather does to my body.... NOT!!! I feel like a freakin barometer.

I'm covered up in a sheet, a double fleece, and a down filled blanket....and and holding on to another fleece. === still freezing.

I am heading to bed... sweet dreams to all
:hug:
Abbie

Not
 

Oh, my friend, that is not the answer. Believe you me when Cleo and I were wondering what to do with me, we even ASKED my physiatrist "can't you just go in there and CUT the stinking nerve bundle?" He let us know that while he Could..... I would be reduced to using a wheelchair forever, oh, and there was the thing about phantom pain that he taught us [of course I already knew due to my Sis Terri] even with cut nerves or amputations that will not necessarily shut off the neural memory of the brain. It has learned a LOT about pain from that region of the body.... a Lot!! It would be more likely to broadcast that same signal than not if we were to take out the nerve......

Same with you, you know. So, you have been given an opportunity to contemplate the SCS possibility as a means to manage pain at least to an extent. One thing I figure, is that my body will ache forever.... Forever! There is a great big BUT in there though, and it is my Boston Scientific SCS. That hummer has worked for me, and does work for me. Does it Always manage All of the pain? No. But it allows me to manage LIFE again without pain meds and I tolerate the balance. Am I a wuss and the pain was not really all THAT bad? Well, my thread chronicles that story, and I know full well when I drop the signal Way down, that BURN is right there where it has been since it first manifested and every bit as bad.

So Abbie, please give thought to your doc's discussions with you. Think about possibilities. Contemplate blessings. Count what you DO have and ponder whether it could be better if your doc was allowed to help you if it is suggested that the possibility is available. No, there are no guarantees at all, and some of those helps do come at a price and some more pain.

I am just trying to give you food for thought. Trying to take your mind in another direction for a while..... provide a diversion.

As sure as my word, I am praying for you Abbie,
Mark56:grouphug:

I'm so sorry to hear that. I too have begged my doctor to amputate. Since I get my treatment at military hospitals, it's very disheartening to see amputees walking around with their new legs while I'm still stuck in a wheelchair. (Please believe that I'm NOT saying I'm worse off than them - so very not true!)

I've been reassured, though, that amputation will not do anything to help with the pain and will likely make it even worse, if possible.

I'm getting the St. Jude's SCS on Tuesday. I've done the trial already & it went really well, so I'm very excited!

I'll be happy to answer any questions about it that I can. :)

Yayy!
 

I'm SO HAPPY for you! I know you've been waiting on this for a long time! The trial went off without a hitch, this is great!
PLEASE let us know how it goes with the permanent!

:hug: Rae :hug:

Thank you! Yeah, I'm really excited and nervous at the same time. I guess we'll soon see!

Peppermint!!
 

Soon you will be there! May all go well for you in the permanent implant. Especially since you learned amputation is not a viable remedy for the pain, you will still now have your limbs which should be responsive to you once the effect of the stim becomes fully useful to you. I can now ambulate, albeit with use of a cane due to my permanent nerve damage.... but, you know what? That is something I could not have had prior to the implant. The pain was just too great.

Praying that angels watch over you in your procedure and that through your implant you are blessed as I have been.

Prayin,
Mark56:hug:z

I too remember being so desperate for relief that I mentally pictured myself hacking off my legs with an axe :(....... also I asked my Dr about getting the sympathectomy to permanently sever the nerve bundle that led to my legs from the lower spine.

It certainly does become a stark reality for one who's pain level is that high - constantly. It's the most helpless feeling in the world, aside from contemplating ending it all (I was there too) :(

Something HAS to give! It just has too, Abbie.

I've had this Monster for 8+ years... I believe at this stage the symptoms are too far spread(head to toe, eyes, throat, tongue, stomach, digestive tract) and too severe for anything to do much for me.

I've been with the same Neurologist for over a year now and this is the first time he insisted on refering me to the NeuroSurgeon.

As far as taking someone with me... everyone I know is working.. I've never married. My parents with whom I live are leaving that weekend for a family get together so I'm pretty sure I won't be able to get them to go.

I always drive myself.... Thanks to cruise control + I don't leave the house if I don't have to!!! I don't know what I am going to do if they decide to go ahead with the trial and/or permanent. Maybe BEG a friend to take the day(s) off.--I know that's a lot to ask in this economy.


To me... none of this looks promising....
and Rrae... it's like you read my mind... contemplating ending it all... is the only constant along with my pain.

:hug: and much love to all.
Abbie

You Never Know
 

Abbie-

You never know what is in store for you if you give breath to opportunity to find a solution for pain management. The Trial is truly not a frightening event when compared to the pain any of us.... even you have endured. It is over before you know it, and IF it works....... IF it works, then you MAY feel the first fresh wash of cool air over your body as though you have just stepped from agony to PEACE. I know when my wife asked how I felt after the Trial commenced..... I stopped, turned to face her, searched out the words, and started to cry..... because I could NOT feel the pain I had known without end for over 5 years..... I cried from relief.

Yes, most likely each of us has at least touched on the thought of ENDING the pain, and there is a very effective forum on the board for we who have entertained the temptation. A VERY SORRY temptation it is..... sure, it is an end all for the one who seeks that solution and a trainwreck for ALL who are left behind. You probably know that from reading on the forum as a Moderator...... BUT, there are other possibilities. Your recommendation to a neurosurgeon has opened at least a window of opportunity you may consider.... consider it. Yes, it is painful to endure, but then all of the days up until now have been painful as well. Is some pain worth a Trial effort to learn whether there is another answer if your neurosurgeon believes you fit the proper patient profile?

I do understand your writings about the terrible grief pain has wrought on your life. Definitely, this is the place in which to vent frustration at the ache without apparent resolution. Just try a little to breathe slowly and consider the possibilities of that which your doctor advises might provide help.

Oh how I know pain isolates, and yet, there have been friends from our church, or from our neighborhood who have helped when I needed to get from Point A to Point B. No one will perform a surgery on a patient if they are unaccompanied when it is performed on an outpatient basis. Is there no friend whether of yours or of your parents who might accompany you to the Trial surgery? Have you been part of a church where there are groups of people who might render some help in this way? If you have absolutely no one who can help, then maybe we need to figure out where you are geographically so we could see whether an NT friend might be able to be at your side to get you to surgery and then back home. I know I would..... not sure you think I mean it? Ask Rrae or Burntmarshmallow. Somehow there must be a way to help you.

So, leaving many [maybe too many] thoughts on your table tonight, I sign off letting you know still again that I am prayin for you,
Mark56:grouphug:

:grouphug:

As far as transportation I guess I will have to wait until I find out the date and then search for someone to help me from there. My friends few, never had many and the years have made them grow thinner.

Parents are retired and are out spending our inheritance...LOL!!:D
Seriously they are gone more than home.

:hug:
:(
Abbie

Hey!
 

Abbie, have you put thought to the possibility of getting a pain pump instead? I keep thinking about your hypersensitivity to stimulation and the fact that you have widespread RSD.
The pump would offer constant pain relief without having to take pills all the time and it wouldn't have the annoying stimulation.
Maybe this has already been brought up and i missed it.

Mark brings up a good point regarding reaching out for help.
We've all grown a very tight bond here thanks to NT. We truly do look out for each other the best we can.
It wouldn't be out of the realm of possibility that one of us might be able to help somehow. Mark & Cleo live in the next state from us and my family has had the wonderful opportunity to meet his family. Pooh lives just north of me. And even if you live in a different continent, we could probably arrange that even! :cool: Ireland and the UK are just a click away. Think on this and feel free to PM any of us to talk details. Nothing is impossible.

Please don't let hopelessness gain the upper hand :(
Most of us have been there, but we hang on to the hope that a break will come and that medical science will reach a cure of sorts with this ugly RSD.

Some of the bravest, strongest people I know are right here. We've faced impossible odds and somehow we are still standing.

We truly care, dear Abbie...

:grouphug: Rae :grouphug:

The possibility of a pain pump has never been offered... I can only guess that is because I have had severe anaphylactic shock to many of the pain medicines I have taken.

Since last post I have spoken to my old Best friend from High School...she said to let her know the moment I hear and she will "TRY" to take a day off from work. So there is one day down....maybe. I don't know how long it takes from consultation to trial surgery...

But if it can wait until November...There is a possibility that my parents will be home and can take me both days. Though I haven't spoken with them yet....I have to have date in hand before asking them...that way I don't interupt their plans.

Does anyone know are these trials Mon thru Fri. or Fri thru Tues type or does it just vary by surgeon and hospital??? Also... how long does a trial run 3 days, 5 days, 7 days ?

Still crying,
Abbie

Well out here in Colorado Land
 

I had my Trial for an entire week. I think others, maybe Rae included squoze more time out of their doc. But for me it was seven days in duration, starting on a Friday, I think I do recall.:)

Length of trial
 

Hi Abbie,

My trial is on Oct 7th and I will have the leads in place until Oct 19th. I am happy to hear this as I want the trial as long as possible to see what level of pain relief I will obtain. I am so afraid that I will get little or no relief. Given the number of pain procedures I have had over the last 2 years and given the fact that each treatment has brought with it a diminishing likelihood of success, it is only natural that I feel anxious and scared stiff. Please God we will both get the courage and determination to face what lies ahead.

I am single with no brothers or sisters so I know too well what it is like to be dependant on others. Some people I thought were good friends have left me down when I needed them most. Thankfully I have made some wonderful new friends who help me in any way they can. Every cloud has a silver lining.

Kindest regards,
Patricia

Trial
 

Hi Abbie :)

Rae is right as usual! We are all here to help as much as we can and please feel free to ask whatever you need and we will try our best to help you as much as possible :hug:

I live in Ireland and when I had my Trial it was my Dr who told me when HE was doing it. It was a Wednesday and I only had the trial until the Friday. As far as he was concerned I would know in that time whether or not the SCS would be of help to me. I would imagine that each Dr has specific days that they work out of the hospital they are attached in order to carry out procedures etc. A phone call to the hospital might let you know your Dr's schedules, eg when he uses the theatres or day cases etc

Im sure if you get in contact with your Dr and explain to him how you need to know the date and time etc as you need to organise transport with your parents or friends in advance, he should be able to give you a ballpark date or even the EXACT date that would suit both you and him. I do hope you can pin him down.

Take care

Jackie

Patricia of Ireland
 

I just send my Far Away hopes and prayers that you sillhave a friend who is upstanding and reliable who can help you with the going and coming from Trial surgery. Lord knows you need the help, as if it is outpatient at all, you must have a driver who vouches for being your responsible assistant to make it home. Also, I hope for you that the procedure provides results you seek as you approach the whole of it with trepidation since prior pain management procedures have let you down.

Caring,
Mark56:hug:zzz