It's not the trial surgery... but I did ask my mom if she would go to the consultation with me on the 30th. She said she thought she might be able to do that. I told her I thought we could be home before noon so not much of her day would be interupted.

She also mentioned that if I could put off surgery until November that my father and she would gladly take me to whatever appointments necessary.

Sounds like my mother was thinking at least one step ahead of me and I didn't know it.:o

I'm still scared.... but I have copied a list of all of my doctors, with all of their addresses and phone numbers, with all of my current medications. I also have copied a list of all of my symptoms and how certain things make me feel.---live vibrations from thunder, music from a passing car, a lawnmower, etc...

If you guys/gals can think of anything else I need to remember to add to my list or take with me... please let me know. I really want to be prepared for this.

:hug:
Abbie

Doing Quite Well
 

From the looks of it, YOU are doing quite well in the preparations department. If you have commenced your list of questions regarding "what is all of this about anyway?" You are quite a step ahead. Also, if you ask the consultant whether you have been seen by the appropriate parties heretofore as learned by Tiki in her posts of late regarding her daughter, THAT would be a good one! No one would want to have you go through this only to have communication with the rep withheld because no pain management doctor had been seen as yet.

Thrilled your Mum was thinking ahead for you, funny how that happens sometimes, huh?
Prayin for ya,
Mark56:grouphug:

Thank you Mark
 

Dear Mark,

I am flying to Dublin at 7.30 on the morning of Oct 7th. My trial is scheduled at 11.30. I hope to get the flight back at 6.30. Two friends are coming with me. Luckily I have 6 first cousins in the Dublin area and they wll do the necessary transportation around Dublin. I could not face a train journey up and down as I could not sit for 2.5 hours each way. I hope I will manage the trip home o.k. Mark, do you have any advice for me in this regard? Unfortunately the flight service between Cork and Dublin ends on Oct 31st. The last time I travelled in June there were so few passangers on the flight that we had to be seated so as to have balanced weight at the front, middle and back of the plane.

I was a golf addict before chronic pain forced me to give it up. That was nearly 2.5 years ago. I still miss it dearly. It is my golf friends who have disappointed me the most. One day in January 2010 I needed a lift home from the hospital following radiofrequency lesioning. Most of my friends work and so could not help but when I asked my best golf buddy if she could collect me, she said that she could not obilige as she was playing golf. I knew then where her priorities lay. I could not and would not leave a friend in the lurch like that. I had to hire a taxi to get me home. Illness is a true test of friendship. True friends are there for you through thick and thin.

Through my pain I have met some wonderful friends. They are always there for me and help me out in many practical ways.

My uncle. Mam's brother, is gravely ill. At this stage we hope that the Lord will take him home soon. He has cancer of the Lymph Glands.

Best wishes,
Patricia

Glad for your Trial Date
 

Patricia-

Even as I ponder the health difficulties with which your family deals pertinent to your Mam's brother, I know a great deal of comfort personally through just talking to God. This faith perspective has helped me through thick and thin and folks such as Rrae and PoohAC know I have had some good deal of thin times. Prayin that peace flow over your family in those final days with your uncle. This sort of thing I take very personally, a reason why Cleo and I drove quite a ways this past weekend so I could sing for the double funeral of a dear work associate and friend from years gone by and her husband who met their departure on an unfamiliar road in another state. It felt so good to give to her and her family.

Regarding what would I recommend for your flight..... well, I do remember being in Hawaii once when my flight was far less than comfortable, so before departure, we bought rubber foam donuts on which to sit for the long flight home. Not the best in comfort, but it got me from point A to point B.

Prayin your Trial, that all goes well, and that during the Trial, you remember BLAST- no bending, lifting, stretching, or twisting until they remove the leads. Now, regarding that penchant for golf, well...... you might want to take a look at KZLRogue and her posts, for after her permanent implant healed, she was in such good shape as to be allowed to golf again!! How about that?!?

Caring,
Mark56:hug:zz

kzlrogue!
 

Mark, I'm SO glad you mentioned her! I was racking my brain trying to remember her exact handle. Yes Patricia, her testimony is VERY encouraging! You should be able to get your love of golf back :hug:

Abbie, speaking of Q's to ask your Dr, I'd certainly bring up the topic of pain pump to see what he says. There are so many meds (or combinations) that can be customized for the pump. If he is like my Dr (and probably many others) he might say something like, "Well, if you did the pump, then I'd have to 'marry' you"...meaning, the commitment involved of refilling the pump, but I'd really like to know what he would say.
I just keep getting red flags regarding the stimulation in your case. If even a passing car playing music causes you discomfort, yikes.

Oh how I hope something will give you a break

:hug: Rae :hug:

I don't think that I updated y'all over here, but I ended up ill and wasn't able to get my SCS implant as planned, so it has been moved to 5 October.

I was very upset at first, but ultimately, the change in date allowed us to find a new church (something we'd been wanting to do for quite awhile now) as well as get plugged into a new community group. For that reason alone, it was well worth it. The prayer and personal support we'll realize from being part of the group just really cannot be underestimated.

Like Mark, I truly feel that my faith perspective has had a significant effect on my overall "survival" of the past two years.

Peppermint!
 

Understood about the delay, but thrilled for you on a new faith community. Truly, they will be able to afford even more help with the prayers which will bear you up through the porcess! So much the better!
Caring,
Mark56:grouphug:

AMEN to that, Peppermintpatty! :hug: Me too!

Abbie, too bad we don't live in Ireland. They have a unit that works just like SCS only it doesn't have any stimulation. It's called Nevro. Not available in the US (yet)
I just keep thinking there HAS to be something for you that would potentially change your life. I continue to hang on to hope that something is right around the corner which will break wide open for these horrible chronic conditions.
There's just gotta be.

Amen
 

Just the way Sidney Poitier sang it..... AMEN, amen, amen!
Mark56:grouphug:

Faith enrichment
 

Hi All,

I believe strongly in the power of the Lord. It is said that God nevers gives us a cross to bear that we cannot carry. There have been times over the last 2.5 years when I have doubted this but these have been shortlived. I am very involved with my parish. I am Chairperson of the Liturgy Group in our Parish Assembly. I really enjoy the challenges that this role presents. In the parish the choir sings at 12 noon mass on Sunday. There rarely is music/song at remaining masses. One of our current aims/objectives is to expand music/song to other masses by inviting people with these talents to participate in the enrichment of our ligurgies. We are slowly making progress but we still have vacancies! Mark, can I add your name to the list???

My uncle is still with us. He is very peaceful and is recieving great care. When I returned from Mass last Sunday Mam had got a bad fall and she is not at all well. I know that she is deeply worried about me and the upcoming trial and its implications for her. Say a little prayer for us.

Patricia

This is what I have typed out for Dr....
 

Symptoms:


From head to toe I feel a cold burning, deep bone aching pain-feels like they could explode, muscle cramping/spasms, feels like something liquid is running down the outside of my body.


Very sensitive to all vibrations, music from a passing car...had to turn down the speaker on my side of the car due to the vibrations causing pain. Thunder from a storm will often leave me curled up in a ball. A lawnmower cutting grass in the neighbors yard sends me seeking refuge.


Very sensitive to all touch...light touch and some times a delayed pain reaction to touch.
Very sensitive to cold air even from the refrigerator/freezer. Very sensitive to the heat...my body doesn't always sweat....sometimes it gets very dry and HOT.


I often have changes to skin color...mostly my legs and feet turn purple, mottled. My hands turn mottled when they sweat. When they are really hot they stay bright red and dry!


I have to be careful with water temperature as sometimes my feet are so cold I can't tell the water is too hot. Same goes for the cold... I can feel the cold, I just can tell how cold...it just BURNS.


I also often describe my pain as the pain you feel after hitting your thumb with a hammer....that instant severe pain...but it never lessens or goes away.






Questions

• What is the safety and effectiveness of SCS in relationship to RSD?
  • I've already had 4 Lumbar blocks, with little to no success.
    • Lasted at the most 8 hours.
  • I've tried TENS unit which only added increased pain, within 25 minutes.
  • I've tried STS by Dynatron. Within 45 minutes, this caused increased pain from level 4 to 10 and spread from ankle to torso on right side, turning skin dark purple.

• How many people with full body have successful outcomes with RSD & SCS?

• How many months do you consider a success?

• How many people with full body have negative outcomes with RSD & SCS?

• How long, how many months,of successful pain relief before pain returns to extreme levels the SCS had to come out?

• What do I do if I have intense (10++) pain during the trial?

• What do I do if I have zero relief during the trial?

Does this look good? Is there anything I am leaving out? Is this too much? I go Friday and I need to make sure my ducks are in a row so I can get this printed out and into my folder to take with me.
I already have a list of current treating doctors, addresses, phone numbers, and current medications.

Thanks to all of you for helping me in each and every way!
:hug:
Abbie

Abbie-You Look Well Prepared
 

Now REST if you can. Permit your mind to wander to something else, giving permission to experience something...... anything you enjoy as a passive participant.... soft music, gentle wave sounds, gently falling raindrops [ you know, from a white noise generator ].... I find such things together with dwelling on things for which I am thankful divert my attention from the immediate troubling pain even a little pit. Get into your favorite body position, and relax, even for a half hour. If you do something thusly, you will refrain from tying yourself in knots as you approach the meeting for which you are fully prepared.

Praying that you rest,
Mark56:grouphug:

Abbie, the fact that you had any relief at all from the nerve blocks is a good sign. Your body is responding, so there is hope!

I'd really like to know what your Dr would say if you asked about the pain pump.
Really curious!

The nerve blocks were 8yrs ago... 1st one lasted approx 8 hours., 2nd one approx 2hrs, 3rd one approx an hours with the 4th lasting no more than 45 minutes.

I did add the question about the pain pump to my list of questions.
I asked are there any other options.... Pain pump?, Ketamine?, Deep Brain Stimulation? Anything in the pipeline that's not yet been discussed?

Yay!
 

I am looking forward to hear how it goes at your appt.
That's a very impressive list btw :hug:

Thinking of you all day today Abbie... check your email :hug:
PEACE
BMW

P.S. Hi Rrae and Mark :grouphug:

It's SO GOOD to see you, Burntmarshmallow!
You always bring a smile to my face when you pop by.
I hope things are going well for you these days?

:hug: Rae :hug:

SCS is a NO GO!!!
RSD is to far/wide spread.

Pain Pump is also a NO GO.
(to be honest by the time we got this far all I was hearing was blah, blah, blah.....)

He said something about my depression but he has no report from my Psychiatrist nor has he talked with her... Nor does he have a report from any Psychiatrist regarding me. So how can he deny based on this??????

Don't know what to do now.... Next Neurology appt. in December.... Guess I do as I've always done until then and then see where we go from there. I know there are other docs and research going on.... may someone let me be a quinea pig.

:( Can you get a second opinion...maybe IU Med Center? I'm so sorry dear friend..and a little angry. :mad: gentle hug and continued prayers.

Hold on a minute Abbie
 

Lots and Lots of CARING going on here, with an overdose of confusion on my part as to where your doc was coming from, especially given the lack of psych report from your psych doctor. I sidle up next to Alffe, wondering whether another opinion is well worth the while!?!?! You see, when I was in dire circumstances regarding the declining situation with my spine and four spine surgeons turned me away.... by the time my pain management doc found my HERO neurosurgeon to work on my spine, the NERVE DAMAGE was far and away too severe for my nerve to ever HEAL. The four previous surgeon buffoons [names may be served as a final course to this evenings meal....... nah, I had best not do that] set me up for permanent nerve damage. The back surgery performed finally on me was ultimately tremendously successful at resolving my back issue.

Why do I bring this up??? For the same reason Alffe rightly asks... well what about a second opinion? So, Abbie, please give thought to whether you have been well served by your present doc, whether another opinion may bring a different perspective to your pain management......

And, know this, you are in my prayers,
Mark56:hug:zz

Original poster requests the thread closed at this time.
Thank you to all for the replies & support.