Major Concerns: Hello All My name is Alisha. I... - CLL Support

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Major Concerns

akillough30 profile image
8 Replies

Hello All My name is Alisha. I am having an issue with the back of my head about an inch from my left ear I have a huge painful knot, that has reappeared in a week. This tim bigger and so painful to the touch. I got woke up early in the am due to the pain. What is it. Is it fatal. My doctor never listens to me.😂😂 and the hospital I feel will do nothing to help.

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akillough30
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Have you been diagnosed with CLL?

akillough30 profile image
akillough30 in reply to

No however I am not familiar with CLL. Does it make knots on your head?

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toakillough30

Alisha - If your doctor doesn't listen to you find someone else!!! Your "knot" could be caused by many things, an infection, for example. Don't jump to the worst possible conclusion and stay away from Dr. Google. You need a doctor who pays attention and checks out the possible causes for this symptom.

The best thing you can do is get to your PCP or emergency room

and those folks will be able to help you.

starsafta profile image
starsafta

Hi Alisha,

Before my treatment, I had enlarged lymph nodes all over my body, including in the area of my occipital lobes, the bones at the base of the skull. Because there isn't much space there, they were painful to the touch. I couldn't believe how large they felt. It's possible that the "knots" you are feeling are enlarged nodes. If so, they are a nuisance, but not fatal.

Do you have enlarged nodes in other areas, perhaps your neck or armpits? Sometimes nodes can fluctuate in size; sometimes they keep growing once they start; sometimes they stay the same size for a while. It would be a good to make your doctor aware of them. Hopefully, you have a CLL specialist who understands the various ways CLL can show itself, and when it is time to begin treatment.

In the meantime, it might help if you sleep on your side so the nodes aren't pressing into your pillow? Or maybe a softer pillow would help? Hope they're in a fluctuating phase, and they manage to get smaller for you.

Keep breathing!

starsafta profile image
starsafta in reply tostarsafta

I just saw the other comments below your initial post. It seems my assumption that you already have a CLL (Chronic Lymphocytic Leukemia) diagnosis is premature. Wondering how you happened to choose this site to post your question?

When you have your appointment with your doctor about the swollen nodes on the back of your neck, you might ask whether tests should be run to determine if you have CLL. If so, you would be wise to find a specialist who is up on the latest information so you can get the best help. A lot of us live well with CLL, with varying degrees of waiting for it to develop sufficiently to require treatment or to being in treatment.

I hope you can find answers and peace of mind.

Mijoed profile image
Mijoed

Hi Alisha, I suspect you found this site through a google search for swollen lumps or similar. Please be careful with Dr Google’s diagnosis !

In the area directly behind the ear is the mastoid air bone. A bit lower down, you have various glands and lymph nodes. In the absense of other symptoms, any swelling with pain in this area is more likely due to an infection.

I would either see your doctor or take a trip down to the emergency / urgent care department today to confirm what it is and get you the appropriate treatment.

Kevin54613 profile image
Kevin54613

Hi, When I was going through watch and wait I had pain on the back of my head right side on the base of my skull. It was so painful I could not sleep and lasted about 3 days. No one knew what it was - Oncologist, emergency room, general doctor. A few years later I had the same pain on the back of my shoulder and was diagnosed with shingles.

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