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Old 11-17-2010, 07:05 AM
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Saffy Saffy is offline
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Join Date: Oct 2010
Location: Derbyshire, UK.
Posts: 758
10 yr Member
Saffy Saffy is offline
Member
Saffy's Avatar
 
Join Date: Oct 2010
Location: Derbyshire, UK.
Posts: 758
10 yr Member
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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"Thanks for this!" says:
Mark56 (12-05-2010), Rrae (11-17-2010), Sophie_ (01-22-2012), TaraD (03-29-2012)