@brayimee I sent you a private message. Please click on the picture of an envelope at the top of this page next to your picture. Hank

@brayimee Hi Aimee, I don't know what to add to helping you after Rachel and Hank, but my prayers are with you. We have just an adoring group of people here, and I always wish I could meet every one of them in person. I am praying you find answers. Lori Renee

@brayimee I've been too overwhelmed with work to keep up with the discussions here, but I had to sit still to drink my coffee, so I'm wading through a very long list of messages.

I can't remember for sure who it was that started a journal/log of everything she experienced - maybe it was Rachel @rwinney I keep a sort of diary to note anything having to do with my health issues, and write in it every night - well, sometimes I miss a night. It helps me keep track of when I start or stop a medication, what doctors I saw that day, my pain details - the level of pain, where it hurt, how it felt - and I write about the emotions I feel...

I don't have anything to add to what others have said, except to reinforce their support and concern for you.

Jim

@brayimee I have been reading through all of the posts you have written the last week or so. You keep saying that you think the 2 hemangiomas T1 & T11 might be related to your problems. I did some reading on hemangiomas. Most of them, like over 98-99% of them, are asymptomatic. But a very few of them can be aggressive. From what I am reading it sure sounds to me like these hemangiomas could very likely be your main problem and the root of all of your issues, just like you have been saying. Your doctors have blown you off about this because they think your hemangiomas are benign. They might be wrong. Take a look at what it says here:

Among symptomatic hemangiomas, the most common symptom is pain at the tumor site, usually in the back. If the tumor expands beyond the bony boundaries or causes collapse of a vertebra it will create pressure on the surrounding nerves or spinal cord. This can lead to pain that radiates to the arms or legs, weakness, numbness, or clumsiness of the arms or legs, or compromised bowel and/or bladder control. (from https://www.columbiaspine.org/condition/hemangioma/ )

And this:

Symptomatic vertebral hemangiomas are rare but should be considered as a differential diagnosis. They can present with severe neurological symptoms. When managed appropriately, patients regain full motor and sensory function. Decompression resulted in quick relief of symptoms, which was followed by an extensive rehabilitation program.
(from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088736/ )

Which means this can be cured!

I think your main problem right now is you are seeing the wrong doctors. I now think that your hemangiomas need to be ruled out as the problem first. Especially if they have not even considered it to this point. Seems very odd they would not have picked up on this.

Hank