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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! |
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 :hug: |
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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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 ... |
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......:hug: Caring Rae OH! ...... and THANK you for the new phrase I'm gonna start using! me DUCKS!!! :D..........emm....:lookaround:...I could actually write a silly poem using that phrase.....but....it would certainly get me in some trouble....tee hee....... :p |
Dear Saffy
Saffy:hug:Im 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:eek: 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:eek:(I was born with one leg shorter than the other:rolleyes:) and since that operation the cold weather nags the hell out of it. And that my back of mine doesnt like the weather either:mad: 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:hug: |
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:hug: |
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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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. |
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:hug: |
I thought I'd do an update to say HELLO .. Mike was off all last week so I had company and no chance to miss my little car. This week we are all snowed in, our estate is like an ice rink, so have not had chance to miss my little car again either.
Tomorrow though, I am driving Mike to work (about 20 miles away) then back .. then to Chesterfield so I can get my hair cut. Not had it done since July and we have a Christmas Dinner to go to on Sunday, so I want to look nice. I need to get hold of a stick aswell as I don't want to wander around with crutches, drawing attention to myself and having to explain over and over again, what is wrong ... Just wrapped a load of Christmas presents this morning so now I'm onto making linings for the curtains in my daughter's bedroom. Busy busy .. and only 7 more days till the BIG meeting. |
Hi Saffy
Great to hear from you! glad you have not had a chance to miss the car yet! and i hope you have a nice night out on saturday night!. I also walk with one crutch and get fed up being asked about it 2 but i think i am afraid of buying the walking stick as i am in someways afraid it will bring extra attention ie i am 38 would people think i was looking for attention with a walking stick!! the walking stick would be so much easier for me as the crutch keeps falling or slipping when i lean it against things and is hard to use when i am with the kids as the kids hold on to the crutch rather than my hand!! I know i should not care what people think but i guess this whole thing knocked my confidence long ago and that part of what people think really does worry me!! |
Saffy good to hear that the car issue isnt keeping your spirits down.
Tell me bout the SNOW!!!!! OMG we are just so fed up with it now. It hasnt touched above freezing for the past 10 days and its an ice rink out there too. But my 4X4 is doing a great job;) Its good to hear that you are going out and about and good for you. Its been a long time since I have actually gone out at night to a social gathering. Sitting just isnt for me for too long:mad: Im up and down up and down....but so glad to hear your in good form!! Only 7 more days for your meeting , terrific:hug: Jenna......dont you DARE mind what others think about your crutch or stick......you NEED it you USE it and to hell with the rest of them. Look people just love to think that everyone is 'faking' it. In fact years ago before my back problem started, I used to do HR and when one of my staff rang in to say they hurt their back, I used to be soooo sceptical....but not anymore!!! You have to go through it to know what its like, and just because you might look perfectly healthy doesnt mean that you arent aching inside. Same with the stick or the crutch.....why would you use it for 'show'...and if anyone did think that well thats the level of their mentality......You go and use it and stay safe...... Only 2 more days YAY!!!!!!:hug: |
Hey now
I use a cane and even sometimes my wheelchair. It depends whether the jaunt is a bit too far, or the standing a bit too long, ........ so, just use what you need, and what other people think..... well to #%&## with their thoughts. Our needs are our needs, pure and simple.
Yep, Mark56:hug: |
Bonjour my dear friends. I am sitting here listening to the washing machine .. it is sounding decidedly un healthy! This always happens at Christmas, something majorly electrical decides to give up the ghost, putting yet more pressure on our wallets.
Grumble! :D Am sat here too, wondering if the "team" have met to decide on a trial date for my stim yet ... I am so excited, yet a little bit worried that they will still turn around and say "no deal" - people keep assuring me that they wouldn't have spent all these resources and appointments to turn around and say "no" at this stage. I'm one of those folks that need the evidence in front of me first though ... *chuckle* It's a miserable day here in the UK. Not sure what I like the best ... snow or rain? Though apparently, there is a load of snow heading our way for Thursday ready to drop from the sky and make this dull, depressing place, look all restive again. I've got the Dotors in the morning and will pick up the last of my presents and then that's it .. I can settle down and wait for Santa! I hope you are all keeping smiling .. and I thank you once again for the lovely acceptance I have had since joining this forum .. |
Bonjour
Bonjour, quelle joyeux Noel! Feel positive about the trial! It will come..... it will come. And THEN..... WOW. The amazing magic of Christmas install is that if they approved you properly is THAT IT WORKS!! That is what all of the trial is about. I am counting on it being in your favor.
Praying, Mark56:hug: |
I've been horrendously depressed .. and try not to come on here when I am feeling that way as I don't want you all to think I'm a moan and groaner.
Sciatic pain has been pretty bad since last weekend, though that may have had something to do with the fact that I dosed myself up with pain killers and drank on top of it on Sunday at the CHristmas Party .. and even managed a dance. I felt fine on the Monday, but since then the pain has been coming on stronger ... oops ! Had to go to the Doctor and she is concerned I may have a stomach bleed so has changed my "tummy protector" pills from Ranitidine to 40mg Omeprazole once a day. Am suffering a few side effects I THINK .. and I say I think because the extreme tiredness may be from the other meds too .. oh hum! Anyhoo .. am awaiting a letter from the Hospital with news on my trial ... trying NOT to be impatient, but must admit to watching out for the postman ever morning. Been trying to get out and walk with my crutches daily, but by, you do forget that with not being able to walk fast, when the weather outside is in minus figures, you really feel it! Other than that .. enjoy your Saturday night everyone .. |
I'm sorry to hear this Saffy....
I had been battling that depression cloud off and on quite a bit, so I certainly know how this feels......:hug:
This is the place to bring the frustration my dear friend!! Please don't make the same mistake I've done in the past......and that is the mistake of isolating and putting up walls.....not wanting to 'be a bother' to others.... We were having this very discussion on Tara's thread, as she too has been struggling. We ALL do! It's kinda of like we get hit in 'waves'......depending on what we are going thru in our seperate little 'worlds'.....I believe with ALL my heart, Saffy, that we SHOULD come here to talk it out...... That's what this forum is FOR! yes? :grouphug:...... You are trying to cope with the frustration and anxiety as you wait for answers regarding your trial.....and the days must seem like MONTHS, as you are dealing with that sciatica pain......and you are trying so hard to stay above that pain, but the meds are bringing on side effects, which further aggrivates things! It's no WONDER you are feeling this way! Please hang on to HOPE......you WILL get that call.....and then you can finally get the trial procedure and our prayer is that you will instantly know if the SCS is going to bring your quality of life back! The cold weather and not being able to get out.....:(.......you've got so many things stacked against you right now..... I try my best to hang on to the Hope of that 'New Day'....and remind myself that 'This too shall pass' !! But, unless I come here, the place where my PEEPS are....the place where we all understand each other's ups and downs.....if I keep to myself for fear of being a 'bummer'....it only makes it worse. We build each other up. We pick each other up. Things are gonna start shining for you Saffy......the sun is gonna peek out and shed some light and you will get the incentive to hang in there...because your day is coming!........SOON!! :circlelove: Always Caring, Rae :hug::grouphug::hug: |
Saffy so sorry you are feeling this way. Like Rae said we all go thru this now and then obviously part of this awful pain we all endure.
I'm praying the hospital will contact you very soon. I know what you mean bout bad weather :eek: we have snow back again and it was -9 last Night brrrrrr Try to stay upbeat and enjoy your Christmas you always sound so cheery :) Take care Jackie :hug: |
Saffy Stay Connected
Depression can grab a firm hold on you and prevent your very connection with the likes of we who are supporting you. Been there, done that, it is NOT a good place to be.
Stay on here and share so we can respond, hold you up best we can, give what we have to give and come alongside. That wait for the letter or call letting you know of the scheduling date for the trial is a long long wait, I know and remember thinking it was not going to come........ then it did. THEN, once I had the AHHHHhhhhhh of WOW, this works, I had the wait through infection, healing, and scheduling for the real McCoy, the permanent install, and believe you me...... it seemed to take quite a while to get on calendar....... THEN..... it was there! Voila' It'll come, it'll come, it'll come..... yes it will. Prayin, Mark56:hug: |
Gnash gnash ... eeee eck, I thought I'd have heard something by now? The Team Meeting was on the 14th ... am I being too impatient?
I've got to go and "sign on" at the Job Centre today, because despite all my issues I am in the "back to work" group which means I get a higher benefit .. Let's face it though, who's going to take me on at the minute? And who's going to take me on knowing I will have to have a couple of month's off next year. Well I hope it's next year and not the year after) I'm partly incontinent because all the meds that clog you up have to be "moved" some way .. and embarrasingly, even when I go for a wee a bit of the the other comes out. And as for passing wind ... I daren't !! I have to sit and clench my buttocks till the feeling gets away or I can get to the toilet! I'm stumbling all day like a drunk because all the meds I am on have sedative effects and my vision is impaired because of the side effects of one of my meds ... It would be some brave employer who would take me on ! :D :D |
.. and my car is now a squished up square of metal ... WAAAAA !!!
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You speak my language!
Ohhhh yes...... :rolleyes: Now, I KNOW this is not 'funny', but, oh dear Lord the way you tell the tale just made me laugh! :p
I'm sure I speak for most in saying that we've all been THERE! ....... But, the flip side of the coin is when nuthhhhing 'moves'....... ....you sit there....and sit there.....:icon_mad:.......and squeeeeze......huff *puff*.......(birthing-technique breathing helps).....and you sit there some more.....waiting......:Crowded:.....FINALLY!... ...one makes it's way through!.....and you hear this.... *plink* in the water.......yep, a tiny little 'rabbit-sized excrement'..... (are we allowed to say 'turd'?) :icon_eek: And what is the 'reward' in all this?? BIG FAT juicy GRAPE-like HEMORRHOIDS! :eek: The reality of this speaks for itself, so I spose I needn't have typed out the graphic details......but just so's we know we are on the same page..... (besides, this helps me to keep pre-occupied from realizing there is an ELF on the INSIDE of my skin, perched on my spine using a BUZZ-SAW trying to make his way OUT of my lower back!!) :eek::eek: I hope you are feeling better :hug: I truly am sorry about your car :( Maybe make a phone call in to the office to try to get the 'status' of what the team meeting had discussed? May be a shot in the dark, but at least you'll know that THEY know that you are waiting. Never hurts. |
Wordless
I would write something trying to be helpful, but, gee, after Rae gave it her all I don't know what to say besides, been there experienced that, didn't remember the Lamaze method of elimination though, hmmmmmm. Do remember the rabbit pellets though...... after alll of that work [and I guess you can say that word, Rae.... interesting, since we cannot express bereft, b e r e f t, due to the censor]
Making a call to the team and inquiring what they came up with does sound like a good idea for sure. Prayin, Mark56:hug: |
Hmmmm I guess we can use bereft
thought it would come out b****t like other words have.
Mark56 |
*grin* ... eee dear ... well as long as it made you smile folks, it's all worth it!
Love you all x x x |
I am PMSL at Rae's post and yes we have all been through it but the way Rae describes it is priceless!!
Well i am also all banged up and i refer to it as my turtle moments (in out , in out) god what are we like!! I have been on Katamine for last few weeks and i am blaming that wonderful drug but i have decided not to take it anymore if i can as i am sure its not good for me long term so as much as dr said not to change my meds i think im doing ok without it! Saffy i cannot believe you are still waiting for a response I dont see why these people can do this to u but i am hoping you get an early xmas pressie and that one of them decides to let you know soon. I already know for me it is helping so much and only wish the same for you real soon. xx jenna |
I phoned the Hospital and asked to speak to Donna, the Specialist Nurse, but she was in transit between one hospital and the other so they took my name and number and that it was with reference to my Stim, but still not heard anything and it's 5.30 pm. :O(
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Oh Saffy
Saffy:hug: I know EXACTLY how you are feeling....waiting on that flipping phone to ring. How frustrating for you. Nothing as bad as being told 'yes we will get them to ring you back' so you wait......and wait........and wait.......and even wait a bit more and nothing.....zilch.......zero!!! isnt it the worst thing...I just think its the height of rudeness.
When I worked in the bank, I had a note book which I wrote everything into, if I spoke on the phone to them or they called me. And I would go through that list before I went home. If I had promised to call back I did. or if I hadnt the information they needed until the next day, I phoned them to tell them that. Because thats how I want to be treated. But Saffy it will all come together. This is the worst time of the year to get anything done isnt it. Im sure once the New Year starts that you will be on here giving us dates and times etc:D So I wish you and yours a Very Happy Christmas and New Year Jackie:hug: |
HI Saffy
It's now christmas eve and I guess those pen pushers did not bother to let you know or give you a status update as Jackiey said its just basic stuff to update someone and not leave that in a limbo but i guess these people have no clue what you have gone through in your life and how much pain you are in now we all just become a patient number. For you i wish only that your new year starts with all good news but i do hope you can have a nice christmas also with your family. look forward to chatting again with you in the new year:hug: |
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Sprry You are having to wait so LONG
Oh Saffy, it seems inhumanly long to wait through the holiday season for your answer. Here's prayin that it comes through SOON!!
Mark56:hug: |
I've not been on much because I'm having a really "down" time .. plus it's the anniversary of my Dad's death tomorrow .. tho it's 14 years and time does heal, some dates do bring the raw memories back ..
I'm smiling at you all ... and I'll be back soon. |
Thank you for sharing this, Saffy....
Losing a loved one is hard enough, but to lose him during the holidays must have made it SO much more devestating! I'm sorry to hear of this saddness. :(.....
I know, no matter how many years go by, that 'day' is always going to be a sad one. And we can't help but allow our hearts to go back and re-live it in our mind. I guess it's only natural......but it sure is hard. :hug: Go ahead and let the tears flow. That's what I do and it feels 'right'. You can still celebrate and honor your Dad's life....and it's ok to cry as many tears as you must. It may sound a bit strange, but in my experience in losing my Brother, is that the more tears shared as we talk about him, the better it heals our hearts. Because some of those tears are shed as we talk about and reminisce of the happy times. Sometimes we even laugh during these tears. Let them flow. They can be like music to the soul. A (((HUG))) to a very special Friend ...(((Saffy)))... ........Rae :Heart: |
To let you all know. Precisely 15 minutes ago I got a call from my Nurse, Donna. The meeting went well and I am now on the list for the stim. They do them every other week at The Hallamshire in Sheffield, UK and it's usually a case of going in on the Tuesday .. down to theatre WEdnesday afternoon ... faffing about for a few days till the settings are ok and then implanting if this is what is going to help!
:D |
Great news!!
Oh Saffy thats fantastic news....your on the list woooooooohoooooooo:D
I do hope that they can now give you a more definite timeframe, so that you can get yourself sorted etc. Here where I had mine done, my Dr only does an implant maybe every 4/6 weeks as he generally likes to leave that time between trial and permanent implant:rolleyes:.....wants the first incisions to heal fully BEFORE he opens up again with MORE incisions........men eh:D But this is great news and I hope it all goes really well for you now....Roll on 2011 for sure!!! Jackie:hug: |
Guess they're all different. Yes, Donna said I would be in the Tuesday and down in theatre on the Wednesday and even, if everything went well, full implant on the Friday .. though it's usually longer, but she says it's not been unkonwn for it to happen so quickly.
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Oh MY!! FINALLY!!
YaYYY SAFFY!!! GREAT NEWS!!
FINALLY you get the call!! This is so wonderful! It sounds like things will move right along now!! So Happy for you! Rae :hug::grouphug::hug: |
Thrilled Saffy!
Great news you have a date and are on calendar...... but the "Bog Standard?" What in the world is that the percutaneous leads such as Rae has had trouble with or paddles like I have? Whatever they do, I hope your trial does prove convincingly pain relieving and that you find yourself going the full distance for implant!
Prayin, Mark56:hug: |
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