Brain Tumor Phobia

Sara, one of the site moderators, asked that I post this, just to reassure a few people.  I am a physician (internal medicine and emergency medicine) and have noticed a lot of posting about headaches and brain tumors.  It is understandable that people who suffer from headaches might wonder whether the headaches come from a brain tumor.  Of all headaches experienced, less than 1/2 of one percent are caused by brain tumors.  Only about half of all patients with brain tumors develop a headache, and those headaches are likely to be mild.  In most brain tumor patients the headache has characteristics similar to those of a tension-type headache.  about a third have a headache that is worse in the morning and when bending over.  Only about 8% of brain tumor patients have headache as the only symptom of their tumor (i.e., they are also having other symptoms such as weakness in a localized area, numbness, confusion, visual difficulties, speech difficulties, seizures, etc.)   The most important thing when you begin having headaches  is to be seen initially by a physician to have organic problems such as brain tumors (aneurysms, infections, etc.) ruled out, and be properly diagnosed.  In that way the appropriate treatment can be started, and adjusted as time goes by.  In over 20 years of seeing (hundreds, ?thousands? of) patients with headaches I have diagnosed exactly 2 people with brain tumors (who did not already know they had one). Almost all the rest had migraines (and a few tension-type headaches; the few aneuysmal bleeds I saw all had a sudden new headache or a change in existing headache.).  Once you have a treatment plan established, see a doctor promptly if your headaches suddenly become more severe, their pattern changes, or you notice anything else that is not typical of your "usual" headache.  Such changes are to be taken seriously as they can indicate infection, bleeding from aneuysms, certain types of clots, or other serious problems.  Well, hope this is helpful.

Hi Laura,

Thanks for this post and to the moderator who asked you to post it. It's not something that occurs to me because it's something that both my gp and neurologist tell me over and over again. I'm not sure if that's because I used to ask a lot or because they know that it's a common concern among migraine sufferers.

I suffer major visual disturbances and sometimes feel like I'm suffering a stroke and both doctors always reassure me its just a migraine. I've had them so long now, I'm used to them and I only go to the doctor when they change or last for an extremely long time and I can't relieve the pain with the "pain management plan" we've put in place.

I think it's important to stress that a good relationship with your doctor is vital to your recovery / maintenance. Then when you are concerned that you have something more serious than a migraine you are comfortable enough to ask the question.

Thanks again.

Hi Laura.  I have either a pituitary microadenoma or a Rathke's cleft cyst in my pituitary gland/region.  Does that cause headaches?  (no pressure to the optic chiasm or anything).  Just curious.  Not looking for free advice but was curious what a Dr's take on it is.

TCB

Jon

Hi Jon,
What you have is not very common (do you know for sure which one it is?) Does it secrete any hormones (if it is a pituitary microadenoma)? It would seem that if you are not having enough of a mass effect to cause visual symptoms that you would not have a headache. Especially if it is a Rathke cleft cyst, it seemed like the first symptoms noted were usually related to hypopituitarism, then visual loss, THEN headache (usually frontal). So I would say if you have no endocrine or visual symptoms, then probably something else is causing your headache, but I am neither a neurologist, endocrinologist, nor a neurosurgeon, all of whom would be better qualified than I to answer this. Not sure if that helps at all -- it is my best guess. What do your doctors say?
Laura L.

Docs say it may be a RCS of micro adenoma (radiologist report from Cleveland Clinic - MRI's taken in Indiana but they use CC as radiology).  I have had a billion blood tests, all been normal.  Headaches and visual symptom in one eye came first.

 

Thanks Laura

Jon

TCB

Thanks Laura,

Sorry it took me so long to respond. You are an invaluable asset to this forum and we are so glad to have you...Please continue to post and keep us all informed...

Thanks for writing this one...I may have more requests **wink**

Love ya,

Sara

laura l,

I too have been a migraine suffer, but just recently found out that I have a Left Cavernous Brain Aneurysms. My Neruo failed to dx for 2 years and still doesn't to this day accept the dx. I have been to Indianapolis and Chicago and they both confirmed the Brain Aneurysm from my films taken by my local Neruo. I have had a MRA done as well as a CTA, the CTA confirmed what the other MRI's showed.
the migraines get so bad I'm in bed for days and so sick at my stomach!!! speach, balance vision problems are a daily thing. they told me it they thought it was MS but my 9 brain lesions wasn't enough to make a dx! so now they are calling it Mini stokes unless I have more symptoms.
All I was told was to watch for the headache to feel like I was hit in the head with a bat!! then I would know that it ruptured!!! I have been told it only takes 8 seconds to bleed out from this, and I currently live 4 1/2 hours from Chicago!! They have told me the risks of doing the surgery before rupture were greater for stoke and/or death, than the risk of rupture if I were to just let it be Gods will.
My life has Changed in the last 6 months!!! at this point in time I'm going with God's will. I have 2 children, 15 and 11 at home and a husband of 22 years, I'm 43 years old and I'm not ready to give up yet!!! the depression has sat in really good at this point. I feel like my life has gone completely out of control and there's nothing I can do about it! but pray.

I guess what I'm trying to ask is, will a rupture feel like I'm being hit by a bat??? I have so many headaches daily!!! and the panic that sets in each time, wondering if this will be it!! I had to leave a full time Supervision job because the stress is too much! I feel like I have walked right into a nightmare and I keep praying I'll wake up soon...

Thanks for taking the time to hear me out... I didn't mean to jump in and dump on everybody!!

Just really confused right now!!

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rrettakay

Diagnosis:
Left Cavernous Brain Aneurysm: 05, Major Depressive Disorder: 05 IBS: 04, Day Time Hypersomnia: 04, Kidney stones: 03,04
9 Brain Lesions: 03: Mini Stokes: 05, Hyperthyroidism: 01, Migraines: 00, Fibromyalgia: 90,
Degenerative Disc Disease/3 Bulging Disc/ Osteoarthritis: dx: 85

Dear RRettakay

Dear rrettakay,

I'm so sorry to hear about the pain you are going through and the difficulty you are having figuring out what is wrong. I can't give you the medical answer you're looking for but maybe I can give you some support.

I like you get regular headaches and share your pain. I have also suffered the depression from suffering from so much pain. As my doctor once said, "having a headache every day is enough to make you depressed." That's not coupled with the effects on your family, concerns about work and friends and just your general well being.

Are you seeing a counsellor? I see a neuropsychologist who speciliazes in chronic pain. She has helped me overcome the depression, even with the headaches. I still face the challenge when I suffer chronic headaches but it helps make it easier.

Is there another neurologist close to you that you can see that can give you a more definitive answer? It doesn't sound like your neurologist understands your concerns and fears and is addressing them. That's part of the doctor patient partnership and if you're not getting what you need then it's time to find someone who will. Reading your email, the choices you have outlined don't sound very positive and I just can't believe they can let someone walk around with something that could rupture giving them only 8 seconds to live without the proper treatment. Ethically it sounds wrong. You are entitled to find a doctor that gives you an answer that you can live comfortably with and don't live in fear that the next headache is going to be your last.

Please keep in touch and post a message any time you need some support.

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Nicky