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Pure Mourning
New Member


Date Joined Mar 2017
Total Posts : 10
   Posted 3/25/2017 8:59 PM (GMT -6)   
I'm sure some of you (if not all of you) have experienced frustrations with doctors and other medical professionals. So I've come to ask helps/tips/anything on what I'm currently dealing with, sorry if this post ends up being book length, lol.

I think I mentioned in a previous post about some of what's going on with me. My doctors and I are running out of ways to help the amount of pain I have been dealing with over the past 6 months or so (more pain than usual), and now I can't even walk anymore whereas 4 months ago I could at least get at round with crutches. I have even gone to see specialist for my already existing cerebral palsy.

We've (my doctors and I obviously) have tried increasing pain meds, which didn't work and I don't want to be on so many pain meds that I just lay in bed and drool on myself all day. I can't lay on my back without being in excruciating pain, so an MRI was out of the question, got a CT scan, showed I have some buldging discs, even after a microdiscectomy, but the pain was not a result of a surgical mess up.

Fast forward a few months of trying a million different procedures I has a Caudal epidural and for four glorious days I wasn't in agony and actually walked a few steps one day but once it wore off, the pain came back with a vengance. So you see my frustrations.

What would you do?

LexiRae
Veteran Member


Date Joined May 2012
Total Posts : 828
   Posted 3/25/2017 11:12 PM (GMT -6)   
You need to find the source of the extra pain. Ask your doc to knock you out or grog you up better and get the MRI done.

The longer you go without walking/moving/using the harder it will be to get back in shape.

Its been a while since you rotated meds. That would prob help too.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 665
   Posted 3/26/2017 9:07 AM (GMT -6)   
Rhizotomy of the offending lumbar nerve roots?

With cerebral palsy, there is certainly the possibility that you have adhesions/scar tissue that are tethering the lower spinal cord/cauda equine.

Nerve plexus pain blocks are another option? Basically, an anesthesiologist injects medication to place a nerve plexus "to sleep." The nerve blocks last about 3-4 months.

Botox is also being used to reduce nerve root pain.

I have intractable pain due to severe avascular necrosis of both hips. I am not a candidate for hip replacement surgery owing to fragile health. I am on a cocktail of fentanyl and dilaudid. I walk because walking is essential to me. Walking is my oxygen. I walk with agonizing pain, despite pain medication, because walking is an essential part of who I am (I am a former marathon runner). All to say: Sometimes we have to make the best of a less than good situation.

Continue to work with your doctors.

You mention that you were unable to lie supine for an MRI scan.

If an accurate MRI would provide helpful diagnostic information, you can discuss other means of pain and muscle relaxant support to enable the procedure. There are options for IV pain medication and IV muscle relaxants to enable the procedure if done in a hospital setting.

Lying in bed is not a positive option.

I will walk until I am simply unable.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 3/26/2017 9:10 AM (GMT -6)   
I too think the MRI can be done with IV sedation. The MRI is much more definitive than a CT. It makes it hard for the drs to treat you without knowing fully what is going on with your back.

I would talk to the drs about IV sedation. Good luck.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Pure Mourning
New Member


Date Joined Mar 2017
Total Posts : 10
   Posted 3/30/2017 6:02 PM (GMT -6)   
Thanks everyone for the great suggestions/replies. Sorry I couldn't respond earlier, really bad days, ya know. Anywhoo

I mentioned the epiddural in my first post and I was thinking when they do the next one which is soon, maybe I'll be able to lay still enough for a proper MRI. She said not to stress over the MRI yet since the epidural worked so well. I was put on a new medication for my spasms. She also plans on looking at the rest of my spine while I'm under after the epidural so we'll see how that goes i guess.

I also told her i was basically losing the will to live because of all this so i'm going to see a psychologist, which i've done before for different traumas. I guess my life is all about trial and error at this point.

Pure Mourning
New Member


Date Joined Mar 2017
Total Posts : 10
   Posted 3/30/2017 6:04 PM (GMT -6)   
Also PM is starting to recommend the baclofen pump which i am not fond of.
"You always have a choice, you can either roll over and die or you can keep fighting no matter what."

- Cerebral palsy
- Epilepsy
- PTSD

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 3/30/2017 6:08 PM (GMT -6)   
Pure Mourning, don't completely ditch the idea of having a pump implanted for Baclofen. Many years ago we had a couple of members that had Baclofen in their pumps & it helped them a great deal. It is very beneficial for people with severe spasticity. Of course, before going that route you would have to do a trial & possibly a psych evaluation.


But again, insurance may not authorize a pump without an MRI. You really need to discuss with the drs being IV sedated & having the MRI to get a true picture of what is going on.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 4/1/2017 8:12:27 AM (GMT-6)


theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 4/1/2017 12:32 AM (GMT -6)   
keep being strong, sending healing thoughts and encouragement.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4899
   Posted 4/1/2017 6:13 AM (GMT -6)   
My pain doc gave me an epidural as a test to see if a rhizotomy would work. If it lasted even a few days, that showed it would. I got the procedure, which wasn't all that different from the epidural, and it worked for a year or so. The nerves do grow back after this, so it's not permanent. It's well worth a try. Not as invasive as a pump or surgery, and it can be repeated.

I'd had epidurals and other steroid shots in spine from neck to tail. They mostly worked in the beginning. After several years I went to the rhizotomies, which also didn't last forever. Since they started failing I've been only on higher meds for the last few years. But I had another epidural last week, and it's starting to work again.

I don't want surgery! I'm afraid I won't be allowed to do things I do now. I had one joint in neck fused after I broke it, and the next joint fused itself. It's bad enough I can't turn my head one way, and I don't want to lose my back motion, even if it hurts.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 665
   Posted 4/1/2017 7:26 AM (GMT -6)   
Purple:
You mention that your will to live is waning.

I can empathize with feeling as though your flame of life feels like softly glowing embers remaining after a campfire.

I also struggle with the emotional toll of chronic illness. The physical toll of chronic illness impacts my emotional wellbeing. I used to consider myself to be fairly resilient but now feel that I run a fundamental emotional deficit. The question becomes: How to recharge ine's emotional batteries?

Talk therapy is not beneficial for me. It only magnifies the experiences that were the basis of my PTSD.

I do find benefit in developing my spiritual awareness and presence, placing faith in God/Higher Power. Sometimes I just have to place faith in a source that is greater than me.

Do you have a pet? I have a tea cup Maltese that means the world to me. A companion pet offers unconditional love and a purpose outside of yourself. I credit the love and indominable sport of my little Maltese for seeing me through many a difficult time. I often feel out of place when with people that are otherwise healthy and living full lives - a bystander. When I am with Molly, I feel complete and whole. I wonder if a companion pet might help elevate your emotional state and well-being?

My little Maltese, Molly, is such an integral part of my life that she has been allowed to stay with me in the hospital (even ICU). Molly always lets me know that I am A-OK. When she looks at me, eyes light up like a bright sun beam and her tail wags with open acceptance. And in the moment, the world is a better place. If you do not have a pet, consider adopting one. The love and bond with a pet can be genuinely life affirming.

I agree with Susie not to discount the benefit of a Baclofin pump. Moderate to severe spasticity can wreck havoc on the musculoskeletal system. Your inability to lie flat may be due, in part, to unchecked spasticity and tethering of the causal equine nerve roots. Dampened spasticity can bring to life muscle function that has been shrouded by overly spastic muscles. You may have muscle and joint function not fully realized due to overwhelming spasticity that overbearing. Baclofin may unleash your better potentials. Keep an open mind.

Sending you friendship and understanding,
- Karen + Molly
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
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