Hospital stay because "not walking is also bad"
Hi Team,
This is just a quick update to let you know that I have been admitted to the hospital.
I had an MRI on Tuesday, and then an appointment with Dr. Haggiagi yesterday (12/2/2020). She gave me the news that the damage to my L2, L3, L4 and L5 nerves is irreversible. The damage is not, as it appears, from the tumor itself or from progression of disease, but rather from the radiation treatment.
Apparently this case is very rare and there is not a "playbook" for how to treat me.
Things have gotten a bit worse lately. Despite physical therapy, I have gotten weaker. This is because the nerves are not enervating the muscles. Instead, I have what feels like electrical shocks and storms in my legs--particularly my knees. Fun. (especially at night.)
I have also fallen down a few times, and I really don't need the bruises to add to the neuropathic pain.
So, the plan to give a very high dose of steroids over five days. This is meant to slow the nerve damage--there is no reversing it.
Not the best news, but at the same time, I really appreciate that my doctors are taking this seriously. Also, Dr. Stein is totally growing on me. In talking about the pros and cons, he made a comment like "Well, it isn't good to be on steroids while you are doing immunotherapy, but not walking is also bad." Truer words.
xo
a
Keeping my fingers crossed that the steroids help!
ReplyDeleteI'm sorry if this is an overstep, especially as this is outside of my specialty, but I'm sharing this in the interest of exploring all options for your radiation injury: I took care of a patient in residency who had radiation necrosis of the spinal cord who we treated with bevacizumab. I did a quick literature search - most of the published data is in radiation necrosis of the brain and not spinal cord, but it may be something to discuss with your team. I obviously do not know enough about your case or neurologic complications of radiation to know if this would be contraindicated for some reason, but figured I'd throw it out in case it could be of some help or trigger other ideas.
Thinking of you and sending many, many positive vibes your way.
Thanks! I will ask them next time they round and see what their thoughts are. Although, I may have to Facetime you in because I've noticed that they are highly skeptical when I say things that sound vaguely medical. The one exception is when I am just like "the numbness is primarily on the L3 dermatome" and draw the area on my legs, and then they believe me and poke me slightly less with the safety pin (but there is still SO MUCH POKING (and hammering... I swear they give the mallet to the youngest resident for funsies.)
DeleteI'm so sorry Amanda. I can't know what it's like, but I have a nerve disease and after having kids I had some major issues and had to have PT as well to try to build muscle around the nerves that weren't working. It's scary to not know how your leg will respond when you go to step on a stair, and not being able to put on pants yet do other motions is frustrating and upsetting and infantilizing and all those awful things. My neurologist is also talking about steroids and has said all the research around that is still new but "hey it can't hurt to try right?" - he sounds a little funny and realistic, maybe a little like your new Dr Stein. I guess you have to have a sense of humor for this work or else it's too hard. Hugs to you - Kristen Balash (UDems, formerly Vining).
ReplyDeleteThanks Kristen. I appreciate the support. The steroids are not *terrible,* but 5 days in the hospital is super-draining, especially during COVID. I will certainly post any updates on how it goes. I hope you find relief with your neuropathy-- it really sucks. <3
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