Post by roosterillusion on Jun 17, 2018 6:18:40 GMT -8
We're really struggling here. For the last...year? two years? who knows anymore...Dad has been complaining of increasing numbness in his legs and feet and up into his torso. None of the doctors seem to know what could be causing this. He's had cervical and thoracic MRIs, lumbar tomorrow. His injury is at the T8/T9 area and he has a lot of hardware in there. Does anyone else have any experience of increasing numbness?? He is very scared and we've been to so many doctors and done so many tests. He's talking about going to Mayo now as a last resort. We're all feeling so defeated.
For the past 4 years there has never been a good day. Not one. Every day we talk about how miserable he feels. I try to remain positive, but it's hard. I don't know what to do to help since I can't take his discomfort away, and I can't convince him to try and live his life as best he can in the meantime. Any advice is greatly appreciated.
I remember you from years past, when you first appeared after your dad was injured. I feel for you that his and your situations have remained difficult and depressing. Unfortunately scans often cannot detect further creeping damage to our cords. Doctors tend to put complete faith in their modern scan technology, but to me a person's actual symptoms define what is going on. As Vintage mentions, there are other things that can contribute to numbness, but I am a big fan of the KISS principle. If a person has suffered a cord injury it is most likely, though not inevitable, that new symptoms are attributable to further degeneration around the cord. At this point a correct diagnosis would not necessarily help much, though it might.
I hope you have found a source of spiritual support for yourself- someone who helps you accept, or make peace with, this terrible situation. Your own power to help is so limited, and yet even if your dad does not recognize this himself, having you to complain to, having your help advocate for him in the ever difficult and sterile encounters with the medical establishment, is a huge help. If that does not ease his mind a bit ... I guess that would be a lifelong personality characteristic of his. So many of us feel lost and isolated in our pain even when there is family about offering love and help. Muskie's son is a current example. Nick did appreciate his dad's and his family's help and support, yet it was just never enough for him to consider accepting his circumstances. All I can do is learn from those folks, trying to take a different path for myself.
A hug from afar to you, and I 'keep a good though' for your dad.
Back in 1999, a clerk at Whole Foods directed me to the book, “The Cure for All Diseases”. It cost $19.99 back then, and was only available as a hard copy. I read it and was thrilled at what I learned. Now, you can read the same book for free! Here’s the link. alternativa-za-vas.com/support-files/cure_for_all_diseases.pdf Pages 417 and 418 discuss Thallium. More pages also talk about it. To get started, click on the link above and scroll to pages 417 and 418. Or, you can click on these photos I’ve posted to get a sneak peek at just those two pages on Thallium without accessing the book pdf.
Post by roosterillusion on Jun 19, 2018 14:33:38 GMT -8
Thank you all for your thoughtful replies, it really means so much to me. This gets awfully lonely, and everyone here taking the time to weigh in is very helpful.
Tetra - you pretty much nailed it. Thank you for reminding me that I can't fix this, as hard as I try. I feel like such a failure at times. If only I had the foresight to be a neurosurgeon and not an English major! I wish I could pull my Dad out of the darkness he is living in. I will never stop trying.
Vintage - I will definitely look into the thallium in greater detail. Thank you for all of the thoughtful resources and for taking the time to share them with me.
Mikeq - Cyst occurred to me too, although he also has a bunch of hardware in there that I thought might be pinching a nerve somewhere. So far the MRIs have looked good (though the docs admitted that the thoracic was hard to make out due to all the metal there).
Post by roosterillusion on Jul 18, 2018 14:53:52 GMT -8
Dad is at Mayo in MN. Tomorrow is probably his last day, and so far we have no new information. So here's to hoping that the doc is saving it all for his last appointment tomorrow! Otherwise we're back to the drawing board...
So, question. Is it better to constantly work towards finding a cure/solution/fix or to accept that things suck and figure out how to move on with life? Are both possible? I feel like the last four years have been searching, searching, searching. What if there is no "reason" he feels worse? What if the reason is "SCI sucks and sometimes gets worse"? I feel incredibly guilty that I just want us to move on as a family. I just want one good day for my Dad. One. I thought Mayo would be our last resort, but now there's talk of seeking out other doctors. I honestly have no clue what they could possibly do for us at this point other than tamper with meds. If something were very wrong, wouldn't they have found it in the MRIs, bloodwork, EMGs, etc? Dare I trust the medical field to do its job?
Okay, done ranting. Someday I'll get Dad on here. You all are awesome and I appreciate your support.
Changes in sensation are often linked to post-traumatic tethering, which causes tension on the cord itself; development of syrinx(es), which are fluid filled cysts within the cord; and myelopathy, where the cord is deteriorating and sometimes fraying. Sometimes those things can be masked on mri by artifact from hardware, and sometimes they don’t show because of density. To the extent that tethering and syrinx can be addressed surgically, outcomes are really variable. It’s very challenging, and there aren’t that many neurosurgeons who work directly on the cord. I know that the life I have now as a person whose disability is complicated by progressive deterioration is profoundly distressing for my family, who alternate between denial and despair. Mostly I’m worried about doing what I can while I can. It’s too easy to focus on everything that I’ve lost and that’s a short path into a bad dark place.
I don’t know where y’all are located or what your resources are but there are inpatient rehab facilities that folks can go to long after their injuries, such as QLI in Omaha, or even acute rehabs like TIRR, where it is possible to go and get a status check and a kind of rehab intensive for any changes. Additionally, Neuroworx in SLC is an outpatient facility and they are truly excellent and very resourceful and positive. It might be worth reaching out to someone at one of those facilities or working with one of the mayo case managers to determine how your dad can best go forward.