Living With Arachnoiditis Home Video4~slk

By: Sheila Kalkbrenner

I borrowed money and I made a very painful trip to see the specialist out of state and ...he told me that the medication that was used in my anesthesia was withdrawn for approval for use in spinal anesthesia. The FDA does not approve of injecting it into the intrethecal space...and had issued warnings about its use for that purpose in 1994. He couldn't believe that my doctors had used this medication this way. He told me that I was very lucky that the medication hadn't settled all in my lumbar spine because I would have been paralyzed if it had.

Umm.. But he also told me that the nerves in the thoracic spine and lumbar region were scarred and tethered to the dura in the lumbar region and that this damage was irreversible. He told me that the original MRI report was wrong. And that at some point the conus, the tip of the spinal cord, had been hit with a needle.

He told me that there was really nothing that could be done to correct it but that he would provide enough information for my pain management to learn about arachnoiditis and guide them through helping me adapt to this condition. Umm.Gabapentin was one of the medications that was tried during this process...I can take a low dose to manage the pain in my ears...So now I can listen to music which I am very thankful for...I have to take it on a rotating dose because if the dose gets too high I get very emotional and I have tremors in my hands. I am an artist um Being able to make art is one of the few things that has gotten me through this situation and a lot of other difficult times in my life.It's important to me that my hands work well.

Umm. I am thankful that that doctor was able to identify the problem. He looked at ALL of my MRI slides and he identified all of the scarred areas.

Living With Arachnoiditis Home Video4~slk

My local hospital umm.. Read the full report and they used that information to teach their radiology team about what arachnoiditis looks like and I hope that other practitioners will be willing to do the same thing. ..to work together to learn more about what this looks like. The specialist arachnoiditis specialist told me that if this condition is discovered during the inflammatory phase there is a treatment protocol that can actually stop the inflammation and prevent permanent scarring. It can minimize the permanent injury.that you suffer. And you have the potential to go on to lead a normal life. So, if anyone out there ever has to get a spinal injection for anything, whether its and epidural steroid injection, or spinal anesthesia, or epidural anesthesia, please ask your doctors to follow the doctrine of informed consent.

Ask them if the drug they are using is approved by the FDA for the purpose. If it is not, ask them why THEY want to use it anyway. Why is it worth it? to take that risk? Tell them you want to know. Shared decision making is one of the best ways to find out what's best for you. Ultimately, it is up to you to decide what's going to be injected into your body.

Umm..I suppose maybe for somebody it would be worth the risk but for me, I would certainly prefer having a torn meniscus and a limp than to be dealing with the problems that I am having now.

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