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.

and much love to all.
Abbie

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

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!!
Seriously they are gone more than home.



Abbie

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! 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...

Rae

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

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.

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

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

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

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,
Mark56zzz