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SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions. |
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04-14-2014, 10:06 PM | #1 | |||
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Saw my NS, no notes from my PM on the injection procedure done in January. Remember I said his reception team seemed unaware I had seen him... I explained I had up to 10 days positive result, that I began walking and exercising and felt real relief and then it all fell into a heap. Apparently the result from that injection procedure indicates I need another fusion on L3/4, the injection in February of which there are notes indicates L2 is ok, it's L3 that is the problem. But because no notes from the Jan injection, potentially I have to have it again.
Discussed my goals and August, he said not to focus on getting back to work, not likely to happen!! But he did say its feasible to have the fusion before and be as well as I can be by August, he believes sorting the lumbar problem will relieve the thoracic and cervical as my thoracic is having to work extra, extra time to carry the lumbar which has a knock on effect on the cervical causing the arm pain.... As I can't get in to the PM until June he will ring him and get me slipped in next week if another injection is needed. He himself is on leave next week and will ring me by the end of this week to tell me what's going to happen. So still no referral to the other NS who does the paddle. I'm not convinced the lumbar fusion is going to sort the thoracic, cervical and arm... Yes I can understand the thoracic pain correction, but my neck and arm pinging and zinging I think they will continue as they have been problematic ever since the car accident in 2004 and deteriorating by the year. The Stim was supposed to have addressed the lumbar, thoracic and cervical. The lumbar technically should not be a problem if the fusions work. I know doctors only focus on one thing at a time, but I'm getting the distinct feeling I'm going to have yet another lumbar fusion and by August they are going to say you now need the paddle for the cervical and arm pain.. Which will mean opening up the back again and doing the laminotomy. I'm really beginning to see Rrae's perspective and it is all driven by insurance and $$$. I rang the NS secretary when I got home and told her I had my diary notes from post the January injection, she agreed it would be beneficial for me to send them in as I really don't want an unnecessary injection just to prove a point that's already been made. The PM reception team have his theatre notes which he keeps at the hospital as back up incase his office notes go missing (seems he really is getting tired and ready to retire). Last edited by PamelaJune; 04-14-2014 at 10:35 PM. Reason: Spelling |
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04-14-2014, 10:36 PM | #2 | |||
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Oh good news, NOT... Just got the phone call from my PM receptionist, she says my NS rang PM yesterday and they feel a L3/4 injection needed. The earliest he can is June 5th with a June 23 flow up. I'm feeling overwhelmed with tears. I can't see any of this being fixed by August, returning to work is not a goal it is a reality. My superannuation payments stop in August and I can't see us able to afford insurance premiums, GP, surgical and medication gap costs post August. Hence why I say I need to begin working come August and need everything surgically done by August while I can afford it.
About to ring NS secretary and have her tell NS the receptionist is sticking with June appointments. So frustrating to have to have it again when I know it worked, my notes say so, and to have to wait until June. I knew next week like my NS said wouldn't happen. I know my PM is tired, I get that, I know they are stretching his diary so he can continue to work part time, and I know as cynical me pipes up, yes, so the PM team can also continue to work, because while he works part-time now, they continue to work full time on full pay but with considerably reduced workload and once he retires they will be without work. |
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04-14-2014, 11:27 PM | #3 | |||
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Rang NS secretary, she not happy with June either but stated NS will not have anyone other than my PM do the procedure. She made a strange comment "they really are putting the clamps on Dr F aren't they" so maybe my cynicism isn't unwarranted.
I'm telling myself to practice what dad always said. If it is meant to be it will be. Obviously there are other things at play and I need to accept it is what it is, in my minds eye, I can see how it is going to pan out. Husbands 50th is July 18. My 40th was spent in hospital, what's a bet his 50th I will be scheduled to be in hospital.... Well I'm not doing it, he needs a celebration of life, July will be a month free of hospital appointments no matter how bad I am. I will just have to suck it up. I was so in pain yesterday and after the appointment disappointment took a knock out pill rather than the pain meds as I'm managing a partial blockage. The knock out pill doesn't cause blockages. Made hubby dinner, luckily decided on a cold platter as we had a power outage from 6pm through 7.30am. Found candles, unhinged powered garage door for easy access. knock out didn't knock me out fully, I was up and down, on the upside, no headache. Must be dads spirit telling me to let it all go and accept I can't worry over everything or influence anything anymore. I'm not what I used to be, I can't will things to happen or make them happen. I am a shadow of my former self and that's ok, it's time to accept and rest and let things happen at their own pace. |
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04-15-2014, 02:25 AM | #4 | |||
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Grand Magnate
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and able to be there for you and explain it too and you bet your of former self you are growing becoming wiser a beautiful person you are happy to meet you i ask my father to watch over my babies as they all were shorted from certain essentials in life like their own dad he would know of their situations i pray his spirit watch over them as nuts as he was you understand i wish you ease with you physical pain and can see you spirit is in the right place blessings to you and family me
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04-15-2014, 11:53 PM | #5 | |||
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Hi Pam,
It is so hard to hear your doc say not to think about going back to work. I think it was his way of saying, focus on you and take it one day at a time, don't set a deadline. Obviously, financially it can be devastating but, from my own experience, it always works out. It may not be the exact life you dreamed of or wanted but, you are a strong person and it will be the best it can be. I am so sorry for your pain and the delays but your father sounded like a very wise man....do try to take it one step at a time, one day at a time....handle only what you can, for today. The bills may not be paid, the house not clean, everything not tended to but, family and friends may get theirs nose out of joint about all kinds of things. Ignore them...be with the people you love, people who make you feel good...not people who criticize you. Even if that means turning away from family. You need THEIR support now. Take care of yourself and be with your husband and let everything else go. All my best, D. |
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"Thanks for this!" says: | eva5667faliure (04-16-2014), Hana (04-18-2014), Mark56 (04-19-2014), PamelaJune (04-16-2014), Rrae (04-22-2014) |
04-18-2014, 08:34 PM | #6 | ||
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I do believe in light at the end of the tunnel, that even IN that long and dark tunnel, the light is on-- though we don't see it. Kinda like at night, or after sunset it seems like the sun is gone, but really it's there... reflecting its light off of the moon and stars to get back to us...like a reminder that the night wont last forever... No matter whatever they will do or say, and whatever happens, YOU are IN the LIGHT, and will always be.. though you don't see it, and even though you are having this miserable pain... So sorry you are feeling so alone, and glad you are with your husband and sharing with us. It helps me to not feel so alone in pain that you are here. Even in the worst pain there'll be a light on... Hana |
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"Thanks for this!" says: | eva5667faliure (04-19-2014), Hannabananna (04-19-2014), Mark56 (04-19-2014), PamelaJune (04-18-2014), Rrae (04-22-2014) |
04-19-2014, 11:16 PM | #7 | |||
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Grand Magnate
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So sORRY Pamela to learn things are....well, difficult and that fusion may be in the works in time.....not good you have to await June for another injection either. GAWSH...that is a hard one. I never had real relief from the injections so hearing you at least had some benefit makes me wonder at this great lapse of time between.
Hana and Diandra, Sorry those pains stay with you as well....and yes, as Pamela says, it can be so very disappointing not to be able to "get back to it" whether work, or play, or exercise.... I had hoped after the first BIG fusion to be able to get back to some rehabilitative skiing, as we have that here when the snow flies. Problem was, with permanent nerve damage I never regained full control/feeling in my legs, so scratch skiing. Even so, more surgeries and such helped me ultimately regain work. I do like being able to help provide for the family again. That is a reward in itself. SO....as D suggests, focus on the getting well part of the fusion thing Pam. One step at a time. Fusion is a big thing. It took several of them finally to leave me in a situation where I can comfortably work in the office once again. But....then you know that about me. Prayin for YOU. Yup, |
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"Thanks for this!" says: | eva5667faliure (04-20-2014), Hana (04-28-2014), Hannabananna (04-20-2014), PamelaJune (04-20-2014), Rrae (04-22-2014) |
04-22-2014, 09:30 PM | #8 | |||
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Grand Magnate
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Pam
Our friends here speak such wisdom. Isn't it wonderful to be so loved Diandra says it so beautifully in regard to accepting things as they are, one day at a time, and yes, you ARE a very strong willed person. So many of the things you say remind me of the things I say. How in the world did we get like this I've actually had several significant mental breakdowns over that question..... But one thing to always remember and realize is that our hindsight will paint the real picture and I truly believe we will be somewhat amazed at what we will see. Once we are able to stand tall and take a good look at the path we've come thru, or in some cases - the path that the Good Lord CARRIED us thru, it won't be about what's 'become' of our lives. It will be more about WHO we've become because of these trials. Thaaaa's RIGHT! Our purpose here on this earth will be made clear and it will be beyond what we ever thought we could be. ....ehem... That's my story and I'm stickin tuit! BTW, I sent a moldy MOON PIE to your SIL and left a note for the postman to stuff her in the sack I enclosed. |
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04-15-2014, 02:15 AM | #9 | |||
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Grand Magnate
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your my kind of woman not only about the diary but you assessment you pegged him you keep on going your a smart cookie you make perfect sense bottom line all this unnecessary things such as the injection stay strong and copies of e v e r y t h i n g me
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