Brain Mets--what do they feel like?

[Nancy L]

Would like to know what brain mets feel like. What did you notice before being diagnosed with brain mets? If headaches, what did they feel like and were they constant, intermittent?.

I have never had headaches in life until about three months ago when a number of things happened to me at the same time. I started to have a headache that was centered from my left ear down my neck-kind of like a severe stiff neck. I also have pain/soreness in my left sinus down the leftside of my throat. Figuring out the root cause is complicated by the trach I had to get during radiation and two teeth that broke off during recent radiation. I am the poster child for BC collateral damage.

I have had a brain scan and two MRIs of my neck in the past three months and nothing found in brain or left neck. Another scan is sceduled ths Friday. i do have a tumor in the right supraclavical and am on T-DM1. I think the BC is causing my headaches but they just can't find it on the scans. Onc is saying referred pain--I find that hard to believe. Wondering if anyone else has had a similar experience. I just want to get rid of the pain.

Thanks for your help. Nancy

[StephN]

Dear Nancy -
Sorry to hear all that
Referred pain is VERY real. I have been dealing with it for months now. From my Lumbar 3-4 all the way to my left knee and shin.

Good they do keep looking to find the source.

In my case there were NO symptoms or headaches at all when my brain mets were discovered.

When I have something sort of close to what you describe, I had a sinus infection. You may have a hard to diagnose ear infection. Have you been to see an ENT specialist?

Just does not sound like brain mets to me, but let them keep looking for the cause.

[NEDenise]

Me too...no symptoms at all.
Hope you find the answer to your headache pain...sooner, rather than later.
Denise

[michka]

Dear Nancy. I understand your worrying. You are doing the right thing by being well followed with MRIs and scans.
I just wanted to share that since I am on TDM1 I have headaches. Or rather pains in my head that come and go. Not during the 3 weeks but mostly the second week. I never had headaches except while on Faslodex.
Please tell us how your scan goes and how you feel on TDM1.
Michka

['lizbeth]

Nancy,

I'm no doctor, but you might want to try a massage therapist who is experienced in Neuro Muscular therapy. It sounds like you are having problems with the left SCM from the attachment posterior to the left ear down into the belly causing the stiff neck. I'm sure it is not the only muscle causing you discomfort from your description. Referred muscle pain can be caused when some muscle fibers remain in a contraction, and tightly contracted muscles in the neck and facial areas can cause severe headaches. It sounds like you have radiation damage and high levels of stress.

You might have to convince the massage therapist to work with you, as many are not experienced with cancer issues. Coordinating with your doctor and getting a release should be sufficient.

What does the doctor tell you to help in relieving the cause of the pain?

['lizbeth]

Self care tips:

1)Try hot packs or cold packs for short periods of time to see if it gives you relief. Typically cold helps acute conditions, warm helps chronic.

2) You can also feel behind the left ear for the lower edge of the mastoid process and put gentle pressure to encourage a release.

2) Grasp the belly of the muscles between your fingers and apply pressure. It is a long muscle belly from the ear to the collarbone and sternum. If you have referred pain you will be able to tell when you put pressure on the muscle - you feel things happening elsewhere. If you have trouble grasping it bend your head forward or lean your head to the left.

Here is information on the SCM:
http://en.wikipedia.org/wiki/Sternocleidomastoid_muscle

I hope this helps you to find some relief, and I sincerely hope you don't have any brain mets!!!!!!!

[Rolepaul]

Nina had pain in her neck and pretty severe headaches. The markers and protein were way up on the Spinal Fluid, and the glucose was low (which can cause headaches). If the MRI was fine a few months ago, it is unlikely that there is brain or spine involvement, but I think doing MRIs of both areas and pulling a Spinal Fluid sample would be something to investigate if the headaches are longer thn 30 days in occurence. I repeat that it is good to be sure there is not a problem.

[Nancy L]

Thank you everyone. Very helpful suggestions. I should know more in a week or so but I am definitely going to try Elizabeth's self care tips tomorrow. I know I am tense about upcoming scans but the headaches have been going on for over two months. They relly wear me out.

[Catkins]

Hi Nancy

You mentioned two broken teeth. Are they on the same side as your headache? Is one on the same side of your headache?

I've got a headache on the left side (non-breast cancer side) and am waiting to have Part Two of root canal treatment or extraction.

A nurse said that if I could get the tooth sorted out, the headache and sinus pain would go.

Just a thought - but worth exploring?

Best wishes

Catkins

[SoCalGal]

No symptoms from my old brain met. But I am the queen of headaches.
As a non- doctor but very good hypochondriac, I woll go on record and say i don't think you have brain mets. I think you are having headaches from tdm1--Herceptin and possibly made worse by dehydration if you are slightly dehydrated (low in your sodium and potassium--blood chem panel). It took me a year of suffering before I correlated dehydration w migraine type headaches from herceptin on its own, including getting a headache when they started the drip too fast. Now its super slow and it helped. Also monitor chem panel for actual dehydration. Raspy voice another sign of dehydration for me...the tooth sinus sitch can also give headaches. Has anyone given you any migraine meds to see if you get relief? One test is worth a thousand expert opinions :-)
I hope they figure it out. Headaches are debilitating. Hang in there!

[Jackie07]

Can you take pain medicine? I've found the 250 mg Ibuprofen works quite well for me. I can double the dose if necessary - but I very rarely need to do that.

Unless the tumor (if there's one - like the Central Neurocytoma(s) I've had all my life) is big enough to cause increased cranial pressure and/or affects one of the 12 cranial nerves, I've read that we basically can not feel there's foreign objects inside the brain.

With the tooth problems and other things you've mentioned, I suspect what you've been experiencing is probably tension headaches caused by the change of your 'bite' ...

It's natural, though, that we want to rule out the BC possibility.

Sending you good vibes.