SCS progress...

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CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/5/2011 4:02 AM (GMT -6)   
...or not :(

I had a meeting with my PM doctor on Friday, partly to talk further about my SCS revision and we decided to go ahead with it. He's referring me back to the doc who did my first stim implant, because of the different lead type that I've mentioned here before. I'm supposed to be an 'urgent' case - my CRPS is really unstable, and the lead that needs replacing appears to be causing problems in its own right because it's putting pressure on other things.

We spoke to the other doctor's secretary today and she wouldn't do anything - just told me that she couldn't give me an appointment any time sooner than August. She's not changed a bit - she's actually part of the reason I stopped seeing this bloke. She's a right b**** and always refused to pass on my messages. The crowning glory was when I rang him in the middle of a really bad flare only to be told that 'Dr. C.... is a very busy man and doesn't have time to return phone calls'...mainly because she never passed them on mad

I'm really hoping that my doctor or my tech can speak to him on my behalf and get something done sooner. I know that a lot of you are far worse off than I, but even a good day lately is a 6 or 7/10 pain and I'm exhausted. Waiting until August or later is going to kill me :(
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 4/5/2011 4:34 AM (GMT -6)   
I am so sorry to hear of the long wait that is ahead of you. I hope your doctor has more pull than a tech to get in touch with the bloke that will do your surgery.Some receptionist have zero bedside personality. Is there anyone else offering this type of surgery? Are they within your insurance network?
I personally have to wait until July to get my leg operated on again. In the meantime I have unbearable pain . These docs just dont get it. If it was their wife that was in my shoes would their tx. be any different? Has anyone else come across that? I know about being exhausted from the high pain level. You hang in there. Keep us posted on your situation.

soft hugs

Betsey
crushed lower knee and vertical fx of yibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected legcontinously without improving/allergic to metal in left leg/leg isnt straight/need metal removed in July/wait 6 months for healing/then toatal knee replacement/straighten out leg/more phsyxical therapy/take opana er

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 4/5/2011 4:46 AM (GMT -6)   
If I were you I would leave a message for the actual doctor to call you back rather then going through his receptionist. I have done that before and gotten better results. I wish docs would realize that their office staff makes a huge impact on their patients. I hated my neuro office staff. They were so mean. I hope you feel better and get in sooner. I agree Aug is just too far away

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/5/2011 5:29 AM (GMT -6)   
Oops - I did try to reply to Betsey's message, but the forum seems to have eaten it. But thanks so much to both of you.

Betsey - I'm so sorry that you too have to wait so long for your surgery. It's horrid to have to wait for something that you know ought to bring you some relief. There is nobody else really who can do it. My current doctor has said that he would be happy to, but he's not got nearly as much experience with the stimulators (he's done my last two leads and I've had problems with both - due mainly to reasons outside our control rather than his methods, but even so...) and he's never used this particular technique before so he'd have to go through the training for it first.

JCG32 - the problem is actually getting a message to him. She refuses to pass on messages to him - which is partly why, as I said, I stopped seeing him. You'd know only too well how important it is to be able to get in touch with your docs when the CRPS flares :-( I emailed my physio tonight to let her know what was happening and she's agreed that I should see if my doctor can pull any strings for me.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 4/5/2011 11:32 PM (GMT -6)   
Hi Laura. I'm sorry you're having trouble getting a message to your dr. Like suggested by some of the others, I would get the dr. to call the dr. and tell him that you need to speak to him. I hope you can find some way to have less pain while you're waiting on the dr. receiving your message. Ooh. I would be so angry if it were me. You are paying the office staff as much as you're paying the dr. I would assume, so she needs to get off her high horse and start doing her job. If she won't do it, then she shouldn't be in that kind of job. It aggravates me to no end when someone in the medical office acts that way. I wish you a low pain night and I hope you are having a good sleep.

love and big hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/6/2011 1:53 AM (GMT -6)   
Laura, it sounds like you've already spoken candidly with your doctor, or at least your tech about trying to by-pass the waste of human flesh known as the receptionist. People like her really get my hackles up, and unfortunately no matter how rude or poliete you are it never makes a difference to them; must make her feel powerful, but I wonder how her employeer would feel if he knew what she was doing, and how she was making his patients feel. If possible I hope your doctor can get through to this other surgeon, and when you get a chance to tell him I'd speak openly and honestly about your concerns about the difficulty you've had in reaching him. Hopefully also if your referring doctor is the one to talk to him he can impress on him how urgent it is to get you in ASAP due to quality of life concerns with your CRPS. I understand about those flare ups you mention all to well. 
 
What's this new lead type you're looking at having done? Is it the same as the one I'm trying to have implanted?

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/6/2011 2:59 AM (GMT -6)   
Thanks Paula, Loretta and Rhaevin. It's so comforting to know that I can come here and vent without having to worry about anyone thinking that I'm whingeing.

Rhaevin - these are the leads that I mentioned when I first joined here. They are a paddle lead, but implanted in a similar way to the percutaneous lead - so don't need a laminectomy. My old doctor is - I believe, the only one to be doing the surgery here.

My other real worry with needing it done quickly is that it's looking more and more as though my injured knee is going to need surgery and I'm relying on the SCS to help stabilise things in case surgery is necessary, as well as to help control my pain afterwards.

I'm not due to see my doctor again for a few weeks so will have to ring or email him, but I'm having a meeting with my tech tomorrow afternoon.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 4/6/2011 8:19 AM (GMT -6)   
Yes I do know when the RSD needs asap attention. Actually my one pain doctor squeezes people with rsd in asap because of that. I would write a letter to that doctor too about the receptionist not relaying messages. Maybe you could even call and state that to her and ask why she does not. I hope your other doctor can pull some strings. To have to wait till Aug is not reasonable in my eyes. Hang in there.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/6/2011 9:12 AM (GMT -6)   
Laura, I'm not sure what the laws are like in pertaining to employees, but if there is someone you can report her too, I would. If it's not possible a good lengthy letter to her employeer should definately be in order.
 
I remember you mentioning this procedure; what I wouldn't give to meet your surgeon! Actually the surgeon I'm seeing doesn't do a full lamenectomy, so that's a comfort. Does your surgeon still suture the leads into place, and if so, what does he suture into. Mine will be suturing into the ligaments in the neck as close to the spine as possible, without risking a puncture.
 
I wonder if there isn't anything else that can be done for your knee. I know with your sensitivity splints or braces are basically impossible, but maybe something could be constructed? Where there's a will, there's a way, and I'm a pretty crafty ingenuitive person at times. Some way to give your knee support but without angering your CRPS, or something that can be done to help with the pain without relying on the SCS. A cream to rub in, or a topical spray.
 
If there's anything I can do to help you, please let me know dear friend. We fight the same fight. *hug*

CRPSpatient
Veteran Member


Date Joined Mar 2011
Total Posts : 1276
   Posted 4/7/2011 7:57 AM (GMT -6)   
Thank you my friend *gentle hugs*

I've had some news. I saw my GP this afternoon, and he's sending me off for CT scans on my knee tomorrow to try to work out what is going on - he is now leaning towards a torn medial ligament as well as meniscus.

I also saw my SCS tech today and he commented on how swollen my knee was, even through my trackies. When I told him what's been going on, and how I may have to wait so long for my SCS revision he said that he will talk to the doctor and do everything he can to get me in asap.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/7/2011 9:02 AM (GMT -6)   
Excellent! See, compassion in the medical field isnt' dead yet; we just have Atilla the Hun working as a receptionist. tongue
 
Hope to hear happy news from you soon!
 

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 4/7/2011 10:09 PM (GMT -6)   
Wonderful! I'm so glad that your scs person is going to talk to your dr. Good luck.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
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