Hi all, it’s Maggie. I just need to include a caution before my post to all POTENTIAL PUMPSTERS: PLEASE DON’T LET WHAT I SHARE KEEP YOU FROM MOVING FORWARD WITH THE PUMP YOURSELF! (I’ve combed through all the pump posts I could, and I haven’t found any about the pump failing to help – so I don’t want anyone reading this to back away from a treatment with so much potential).
I’m so sorry to keep posting with the same crisis, which is that I no longer know how to live with the agonizing pain from my spasticity (I have come to a point where the disability is fine with me – it’s the pain that I can’t bear).
The last time I posted I was devastated because my Baclofen pump surgery had been canceled indefinitely due to a pump shortage at the Medtronic plant in Puerto Rico, and I didn’t know how to cope with the pain without being able to count down to the date it would be relieved by getting surgery for the pump.
Now I’m posting under very different circumstances, but for the same reason. I had my pump surgery 3 and a half weeks ago, but it still hasn’t worked to relieve my pain/spasticity.
Based on my experience at my pump trial, I truly believed that the surgery would be a “silver bullet” (or silver hockey puck!) for the pain (after over 4 years of trying to get help) – AND, on top of that, quite possibly give me the chance to be mobile again.
At the trial they injected 50 micrograms into my spine, and within an hour I was almost completely pain free for the first time in 4 years. I could stand up straight for longer than a minute for the first time in 4 months, and I could walk fluidly and without massive effort for the first time in 2 years.
When I talked to the physical and occupational therapists and my PMR doctor during my post-trial evaluation, my spasticity scores were down everywhere from a 4 on the Ashworth scale to a 1 or a zero, and they said they were confident that what the trial did temporarily the surgery would do permanently – relieve my pain AND, gradually, in combination with PT, help to restore my mobility.
But it’s now 3 and a half weeks post-surgery, and I’m still crippled by the same level of pain. The post -surgical pain was a piece of cake compared to the spasticity pain, and at that point I still thought it would work.
I’ve had my dose adjusted twice – from 50 micrograms (which is what I was on at the time of the trial) to 80, and then again from 80 to 120 – by a PA I'd never seen before -- and it hasn't made a dent.
I am heartbroken. But beyond me, my sweet husband has been hoping and praying and my sweet daughter has been trusting that the surgery would work.
Has anyone else had this experience – with the ITB working during the trial but not working after the surgery? If so, what did you do?
And if not, please tell me if you have any advice for me (both to help with the pump in the long-term and as a stop-gap measure for the pain during the holidays). Two weeks post-surgery without relief I started to think again that I am a hopeless case, but I have to hang on for my daughter and husband, and any words of encouragement you can give me will help.
Please know that I am not a wimp (which sounds silly). It’s just that I have been waiting for over 4 years and before the surgery the pain had gotten so bad I couldn’t think straight – it wasn’t just my body but my mind – and because the pain hasn’t been relieved I still can’t think.
But I know that I promised my daughter that I’d be able to decorate the tree this year after my surgery.
I made it a rule never to make promises to her about my MS, but after the trial and after I met with the surgeon and his PA they all told me I’d be able to decorate the tree after my surgery, and I broke down and told her the night before I went in what a great thing the surgery was (because she was worried) and that my doctors had said we’d be able to decorate the tree afterwards.
And now I’m back to where I was, crumpled in pain, unable to think straight or stand up for more than a minute – and she’s still waiting for us to decorate our tree.
I made a promise I couldn’t keep –and it’s different for adults – but for a little girl watching her Mom in pain -- I don’t know what to do any more.
Please help if you can. Thank you so much.
I’m so sorry to keep posting with the same crisis, which is that I no longer know how to live with the agonizing pain from my spasticity (I have come to a point where the disability is fine with me – it’s the pain that I can’t bear).
The last time I posted I was devastated because my Baclofen pump surgery had been canceled indefinitely due to a pump shortage at the Medtronic plant in Puerto Rico, and I didn’t know how to cope with the pain without being able to count down to the date it would be relieved by getting surgery for the pump.
Now I’m posting under very different circumstances, but for the same reason. I had my pump surgery 3 and a half weeks ago, but it still hasn’t worked to relieve my pain/spasticity.
Based on my experience at my pump trial, I truly believed that the surgery would be a “silver bullet” (or silver hockey puck!) for the pain (after over 4 years of trying to get help) – AND, on top of that, quite possibly give me the chance to be mobile again.
At the trial they injected 50 micrograms into my spine, and within an hour I was almost completely pain free for the first time in 4 years. I could stand up straight for longer than a minute for the first time in 4 months, and I could walk fluidly and without massive effort for the first time in 2 years.
When I talked to the physical and occupational therapists and my PMR doctor during my post-trial evaluation, my spasticity scores were down everywhere from a 4 on the Ashworth scale to a 1 or a zero, and they said they were confident that what the trial did temporarily the surgery would do permanently – relieve my pain AND, gradually, in combination with PT, help to restore my mobility.
But it’s now 3 and a half weeks post-surgery, and I’m still crippled by the same level of pain. The post -surgical pain was a piece of cake compared to the spasticity pain, and at that point I still thought it would work.
I’ve had my dose adjusted twice – from 50 micrograms (which is what I was on at the time of the trial) to 80, and then again from 80 to 120 – by a PA I'd never seen before -- and it hasn't made a dent.
I am heartbroken. But beyond me, my sweet husband has been hoping and praying and my sweet daughter has been trusting that the surgery would work.
Has anyone else had this experience – with the ITB working during the trial but not working after the surgery? If so, what did you do?
And if not, please tell me if you have any advice for me (both to help with the pump in the long-term and as a stop-gap measure for the pain during the holidays). Two weeks post-surgery without relief I started to think again that I am a hopeless case, but I have to hang on for my daughter and husband, and any words of encouragement you can give me will help.
Please know that I am not a wimp (which sounds silly). It’s just that I have been waiting for over 4 years and before the surgery the pain had gotten so bad I couldn’t think straight – it wasn’t just my body but my mind – and because the pain hasn’t been relieved I still can’t think.
But I know that I promised my daughter that I’d be able to decorate the tree this year after my surgery.
I made it a rule never to make promises to her about my MS, but after the trial and after I met with the surgeon and his PA they all told me I’d be able to decorate the tree after my surgery, and I broke down and told her the night before I went in what a great thing the surgery was (because she was worried) and that my doctors had said we’d be able to decorate the tree afterwards.
And now I’m back to where I was, crumpled in pain, unable to think straight or stand up for more than a minute – and she’s still waiting for us to decorate our tree.
I made a promise I couldn’t keep –and it’s different for adults – but for a little girl watching her Mom in pain -- I don’t know what to do any more.
Please help if you can. Thank you so much.
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