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Old 11-17-2010, 07:05 AM #1
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Default Saffy: My Journey to SCS

Right .. I can start my own now ....

Physcological Evaluation Day
I had a really horrible day the day before, and spent most of it crying. I dosed myself up in the afternoon with Diazepam to make me sleep as I just wanted that day to end.

When I woke Tuesday morning I was feeling really low and started crying, leaving my eyes red and puffy - not a good start.

The I put a post on my Facebook status asking for good vibes ... as we drove to the Hospital (we all went .. the whole shebang, Hannah, Hollie and Mike .. and myself of course) ... I was getting replies to my statement wishing me love and sending me vibes ... everyone in the car was beeing cheery and jokey and I eventually felt my heart warm and my spirits lift. Strange, but true!

By the time we got to the Northern General I was all set !

I met Jayne, the physcologist and she and I went to chat. I hit in first when she said that Donna had done a great job the previous week but was there anything I wanted to go back to.

I said yes, the "No you can't have it" factor and the possible failure.

I explained the it failing was easy because all I ever wanted was a try at this .. I'm not expecting a miracle - if I get some relief it will be a bonus.

The "No you are not suitable" I said I thought I had actually addressed this in the months between April and September as when I saw Dr. Atcheson at the Pain Clinic in April he wasn't at all sure this would benefit me and he wanted to send me to his colleague, Mr. Roe, a Neuro Surgeon, for a second opinion. I came out of that appointment in tears and over the weeks settled it in my head that it was going to be a "no". I thought he was sending me to Mr. Roe to explore more surgery, but as Mr. Kemeny had already said that he couldn't operate I thought this was a gentle way of finishing it.

After Mr. Roe said yes, I have to admit, it took some time to sink in. I kept poking Mike and saying .. "He did say he was willing to operate didn't he?"

So, I told Jayne that, in some ways I had dealt with the "No we don't think it's right" ... and that's the only issue I wanted to raise with her.

We agreed on my seeing a physiotherapist who has good knowledge of SCS as Norman, my usual Physio didn't know that much about them. So, after the op I will be going back to the Northern General to see this guy.

I asked her what happens next. She said she would write to Mr. Roe .. and that it was unusual as normally patients see the Specialist Nurse initially, then the Clinical Physcologist, THEN the surgeon .. so I was ahead of all that.

She asked if I wanted to see a draft of the letter first .. but I said No, to just carry on.

I asked her about timescale and she said if I liked she would call and ask there and then .. but she did say that they were having a meeting re. the SCS patients on December 14th, so I said No just leave it till then. I didn't want to appear pushy and hey, I've lives with this for years so a few more weeks wont make any difference.

She said she could see no physcological reason why I should not have the trial done .. and I guess this means that everyone on the team agrees it should go ahead!!

A bit scary now .. but I'm going to nose online for treats .. for ME!
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Old 11-17-2010, 10:08 AM #2
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Heart Dearest Saffy!

You're done with the evaluation! Hurray!

I'm so sorry you've had such a bad time of it lately...
Please know that we are always here for you. You can vent and cry here all you want...... I sent you a message. If you don't feel like talking out here on the main board, feel free to send me a private message if you just need to talk.

I'm SO happy that you've got such a wonderful family support system! And now that this evaluation is overwith, you must feel as tho a weight has been lifted yes?

My hope and prayer is that you'll be able to get the pain relief you so desperately need...... the sooner the better! Hopefully before the year ends you'll have some answers!
I feel real good about your upcoming procedure.....!

Sending positive energy...
and praying for *Peace* to rest upon your weary heart.....

Your Friend Always,
Rae
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Old 11-17-2010, 10:22 AM #3
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Rrae .. you make me smile! I'm wondering when it will be ... before Xmas or after? Who knows? I'm not fussy .. I'm just happy to know I am going to be able to take advantage of the trial ...
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Old 12-02-2010, 06:02 AM #4
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Well me ducks .. (a Derbyshire saying), its now December ... only another 12 days before the "meeting" ... I wonder if they will give me a date from that meeting?

I've had a few down days recently and would like to say thanks for the PM's .. am ok, just .. y'know ...

Sad, sad news yesterday. My little car failed it's MOT and it's just not going to be worth repairing it. So I had to phone the garage today and ask them to take it to car heaven.

I don't think Mike understands, but I feel even more disabled. At least with my car I could get out. I've been walking a little with my crutches but have found that the cold weather makes me stiff with cold and brings on the back spasms ... I was very lucky that Mike was home the other week and I could call him to collect me as I was in tears.

I'm a bit low about this ... I'll bounce back .. there's always something good that comes out of things that happen ...
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Old 12-02-2010, 08:27 AM #5
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Crazy Ahh Me DUCKS!!

Saffy!
I am so VERY sorry about your car! I know what this is like and it IS a sad thing!
Try to keep your chin up the best you can ok? Your appointment date will soon get here, which will get the ball rolling and your quality of life will make a huge leap! Carry this 'HOPE' with you ok!

I know what you mean about the cold weather.......I have been in a big pain flare as our weather has changed radically. Actually, that is the main reason I wasn't able to get on here.......just one of those 'bad' days........
.....yep.
If ever you want to talk......

Caring
Rae

OH! ...... and THANK you for the new phrase I'm gonna start using!
me DUCKS!!! ..........emm.......I could actually write a silly poem using that phrase.....but....it would certainly get me in some trouble....tee hee.......
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Old 12-02-2010, 10:35 AM #6
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Default Dear Saffy

SaffyIm so sorry to read your post. How you are feeling!!!

Its is a sad time to think that your independence has been snapped away from you now that your car is gone. Believe me I know exactly how that feels. Its is you life line isnt it. BUT.......no point in driving around in something that would cause you more pain maybe You WILL bounce back, Im sure of it.


Im sorry too to hear of your down days. Yes this weather wont help. I had my left leg shortened some years ago(I was born with one leg shorter than the other) and since that operation the cold weather nags the hell out of it. And that my back of mine doesnt like the weather either
Its not a good time is it!?

Im hoping you will have a date as soon as you have your meeting!!

Try to keep your chin up, you know we are all thinking about you and praying for you. If you do want to talk, remember Ive BROAD shoulders!!!

Take care my friend

Jackie
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Old 12-02-2010, 11:34 PM #7
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Heart Awww Saffy

Sorry about your car. It is SO limiting to have these issues, and especially when your car has to go off to car heaven...... When I was on the morphine, I just did not drive, feared being in a collision with someone under the influence you know..... So I felt imprisoned at home unless one of the family or a friend took me about.

May you be filled with rays of hope [maybe even from RAE] and may our prayers lift you as you prepare for and ultimately get the procedure. I have hope for you,
Praying,
Mark56
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Old 12-03-2010, 11:22 AM #8
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Saffy! so sorry to hear about your car! that is a tough blow and I know how it can feel like you are losing yet one more piece of life or piece of mobility, I think we all probably understand that really well. I have not been able to drive since my accident because of my neuro deficits but could get outside a little bit with my wheelchair or crutches and now that the snow and ice has set in I am not really able to do that (I have proven that I can fall and damage mysylf on perfectly stable, dry ground, need I tempt fate with snow and ice?) and it frustrates me. It looks as though we may be on the same timeline for the SCS trial, it will be nice to have a partner to be in pace with! Chin up! hope you are having a great day.
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Old 12-03-2010, 12:38 PM #9
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Hi saffy
so sorry to hear about the car, it seems we all know a bit about that feeling of being trapped. after my accident my living room became my prison I dont think i left for over 4 months, hubby got me an automatic car and dr got my disabilty badge and even if i dont go out the door everyday i know i can. I hope you can get some transport organised as we all need to get out of our homes even if it is just to go around a supermarket for a few minutes.
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Old 12-05-2010, 06:28 PM #10
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Heart irljenn is so right

Isolation is debilitating. Getting out and about is a help. Even when I have had to use my wheelchair, I have gotten out, and it is balm for the soul. I have my cripple tag for the car, so it is usually easier to park, well...... that is....... unless everyone else with such a tag had the same idea. Even so, getting out and about is a good thing, a good thing indeed.

Praying,
Mark56
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