i sort of know what your going through as i have NF1 and suffer horrid pain shooting down my leg DR in the uk dont seem to understand my condition and i have been pawned off with codine and other pants pain killers which do nothing to ease the pain when i get it.
]

Thanks Fiona and Vivster, those were my thoughts too. I'm hoping to start cutting down on morphine and ketamine, but if I have to switch the SCS off when driving this would not be possible. I haven't driven since the operation yet, it's only been 2 weeks an 2 days, hope to be back driving again soon though. Cheers for the heads up xx
:grouphug:

Hi there, welcome to the forum :-) blimey I've just done some reading up on Neurofibromatosis, I'm really sorry you are suffering so much. Have you seen anyone about spinal cord stimulators? I understand about being pawned off, it's happened to me for nearly twenty years. They have tried every thing they could however it was only by me pressing about SCS that I started on this road and I had the permenant machine put in 2 weeks ago. Where abouts in the uk are you? :grouphug:

Lessons Learned
 

The good part first.... we bought me an Eagle Talon Tsi AWD sportster and I have been having the greatest of times driving as I used to ski..... fun and more fun.... oh, and yes, I use the stim as I drive. This is because I weaned off of ALL pain management meds, my mind cleared, and I feel comfortable with the control over my car. Fiona is right about being cautious at first giving yourself room to see whether any issues will present at all. Say for instance an implant was cervical, the twist of the neck to view all angles around the car could have disastrous consequences.

Now, Si, about being pawned off....... and this is serious, far more so than even me with being pawned until cauda equina set in, now I have PERMANENT NERVE DAMAGE. End of my tale.

So, we move to another, our niece, of whom we learned today she had been pawned off and pawned off with gynecological issues. At last, hysterectomy was proposed and performed. Pathology. Uterus overtaken by cancer. She is 41, and a single Mom. Maybe someone feels sorry about their having pawned her off for so long without taking seriously her dr visits, her symptoms, her complaints. Bottom lline? The pathology has also shown her pelvis to be overcome with cancer metastatically. Pawned off. Some docs perhaps should not be awarded the degree.

Pray for our niece if you will, and Si, I am adding you to my prayer list,
Mark56:grouphug:

Pawned off....
 

Ooooo I get fumigated when I hear that another person is in this situation.
Mark, I feel so sad for your niece - to be pawned off on all those occasions. It's a sad sad state of affairs. :(

Si - it's great to have you here with us! I'm sorry about this condition you are suffering from. You've sure found a great place for support and understanding. We're all in this together. Please know that you are not alone in this, despite what your Drs might make you feel like.
I know very well the feeling of being pawned off

Rae
:grouphug:

Si
 

Now is the time to get in there and FIGHT for yourself.... be your advocate because you will not take NO for an answer!

Prayin,
Mark56:grouphug:

Blimey I'm really sorry Mark that's terrible about your neice :( my CRPS pain developed from medical negligence when I was 13 (I'm now 33) and we have had to battle the system all the way here, 20 years. It shouldn't happen but it dies to so many and my heart goes out to everyone.
I'm really hoping to come down off my meds, I've had enough of feeling constantly doped! I got my appointment for my re programming (which I really need to have as its not reaching my foot 75% of the time and I am despearate to get the most out of my SCS) but the appointment is another month away :(:( I'm going to ring and plead with them for it to be sooner, fingers crossed :)

Hope you are all ok xx
:grouphug:

it pains me
i am a fighter
it pains me
no giving up

Hi Rachel
 

I really hope you can get your appt. sooner. I am sorry they are making you wait so long. From everything I have learned it would be better for the pain patients to adjust their own devices, thereby elimating the need to be in pain while you wait for an appt. If they experiened the pain as you do, I bet they would run to the nearest rep. Sorry this has happened to you. I have pn so I know a little about what you experience. You will be in my prayers. ginnie

Thanks Ginnie, yeah I'm going to be on the phone first thing tomorrow. You would think they would understand how important it is. Hope you are doing ok? Xx :hug: