Bone marrow edema Cervical 1 & 2 discs, anyone with answer?

[Questions4U]

Started 10 months ago by waking up 1 morning by severe pain in lower right skull & around the rght ear & cheekbone. Finally an MRI in May shows bone marrow edema in these 2 discs, C1 & C2. Neurologist said he'd never seen this in that area. Only thing diagnosed beyond that is mild osteoarthritis & osteopenia. I had to search the internet to read that main treatment is "off loading" or taking weight off the joints involved and resting a lot. Also, that it usually occurs in hip, knee, or maybe ankle. If it doesn't heal on its own it progresses to bone death, usually within 2 years. There are some things that have been tried according to the little amount of info available. Such as infusions of Bisphosphonates - apparently taking them orally adds issues. ESWT supposedly has been used to reactivate blood flow in areas not allowing it. Increasing vitamin D. Jarlsburg cheese for a type of vitamin K in it. Pain is usually treated by NSAIDs to which I happen to be allergic for 25 yrs. so I take an 8 hr dose of Tylenol & stay up a couple of hours at a time, then lie down on a pillow prop. The pain goes up as I stay up and try to do daily chores and down with rest. Anyone with this problem in upper cervical discs? If someone else needs them & this site allows it I can share some websites with the main info I've located. My last healthplan specialist finally admitted they have no orthopedic surgeons treating actual bone diseases....

[hunter5582]

At this point I expect you know more about cervical bone marrow edema than any f us do. I would wonder about the possibility of this being related to swelling of the bone marrow due to the MPN rather than bone marrow edema from another cause such as rheumatoid arthritis. It sounds like answers will need to come from a team of specialists, including an orthopedic spine specialist and a MPN Specialist. If I understand this correctly, you might also need a consult with a rheumatologist to rule out contributing comorbidities like rheumatoid arthritis.

When dealing with a rare condition like MPNs which can have uncommon manifestations, consultation with a MPN expert doctor is particularly important. It is unreasonable to expect a regular hematologist or other specialists to be aware of all the different ways that MPNs can present. If you do not already have a MPN Specialist on your team, consulting with one ASAP is essential. Here is a list. mpnforum.com/tsr-the-list/

[Questions4U in reply to hunter5582]

Thank you for the quick reply. But already 47 blood tests from a rheumatologist and nothing showing up. No abnormalities in the blood tests including CBC ordered previous to those 47, other than high B12. That is viewed as just overdosing since I'm not obese, diabetic, nor have any liver problems. I'm aware that can be a leukemia indication. I'm on USA healthcare, & saw there are doctors on your list in my area. The healthcare plan has me stalled at the moment. So, I'll be looking outside of it in my area, but mainly for bone disease specialists since that still seems to be the likely area needed. Thank you.

[hunter5582 in reply to Questions4U]

Definitely time to see an orthopedic spine specialist. Would also be sure to see a MPN Specialist if you do not already have one. Diagnosing this issue will require collaboration between several specialists. My experience has been that we need to be our own case managers to ensure the information is shared and collaboration occurs as needed.

Please let us know what you learn and how you get on.