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Avatar universal

Brain Lesion. Help, so scared.

The right side of my face has been numb/tingling for about a week which started after a horrible headache behind my right eye. CT scan, lyme's, blood work, lumbar puncture all came back negative.  They found a lesion (not quite 1/2") on the back of my brain.  My appointment with neurologist is not until next week.  I am going CRAZY!!!! I am very healthy normally, I am 31 years old.   I never had headaches before, there is no history of cancer, headaches, etc in my family.

They are trying to use the spinal fluid already taken for more tests.  

I am freaking out b/c I have a few questions that no one will answer b/c no one will talk to me:

1:  Do lesions always have to be removed?
2.  Is there a less invasive way to biopsy it than surgery?
3.  Do they always have to be biopsied?
4.  Is it possible it has always been there and it isn't even causing my problem?
5.  Are lesions common?
6.  Are there ways to get rid of lesions other than surgery?

Please, any help would be great!  Something maybe to ease my mind until then.
21 Responses
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1831849 tn?1383228392
While it's great that you have no new lesions, it stinks that your still in LimboLand. Given your positive outlook, i'm sure you'll handle what ever comes your way.

Kyle
Helpful - 0
Avatar universal
My neurologist just got back to me with my results. Good news, no new lesions. He is very optimistic that what I have was caused by something other than MS…. or that is what we are going with for now.  I have to get another MRI in 6 months. To everyone that is waiting on diagnoses or results, please hang in there.  I hope you all get good news.  
Helpful - 0
1831849 tn?1383228392
Hi Kirk - Welcome to our little group!

Worry is an intrinsic part of life with MS, or traveling down the diagnosis road. The question is, how do you deal with it?

I admire your approach. There is nothing we can do between first symptom and definite diagnosis, so why worry :-)

The worst case scenario is rarely pretty so why assume it will apply?

Keep us posted on your diagnostic journey!

Kyle
Helpful - 0
1831849 tn?1383228392
Hi Kirk - Welcome to our little group!

Worry is an intrinsic part of life with MS, or traveling down the diagnosis road. The question is, how do you deal with it?

I admire your approach. There is nothing we can do between first symptom and definite diagnosis, so why worry :-)

The worst case scenario is rarely pretty so why assume it will apply?

Keep us posted on your diagnostic journey!

Kyle
Helpful - 0
Avatar universal
I have never posted here and just found the website a few minutes ago.  I have an arm that has pain, tingling and patches of numbness.  They found one brain lesion at the base of my brian by accident while MRI’ing my spine. (They found the spinal cord swollen and have no idea why, but that is a different issue.)   They have now done an MRI on my brain and I am awaiting their call.  I just wanted to say to everyone, worries gets you no were.  When I talked to my neurologist he gave me the possible causes for it.  Some scary others not so much, so I have decided that I’ll just deal with it. I can do everything I want now so I am going to enjoy it and take the news as it comes.  Now this does not mean I am not nervous and I jump for the phone every time I hear it ring. I am just going under the assumption that I have one, that my arm will feel like this for the rest of my life and I can deal with that.
Helpful - 0
Avatar universal
Thank you for your response.  My daughter had complete numbness on her left hand and the MRI showed a leason.  I have been worried sick.  Cant sleep and my relationship has suffered.  Your comment has eased the pain.  The doctors indicated that she has Antipholspid syndrome and hemorrhagic migraine.  So far, she is going good on the meds. However, I am always worried about the leason.  Praying to god has helped.
Helpful - 0
Avatar universal
there is a semi-chemo therapy for MS lessons in the brain and spinal cord it would remove them completely or at least 90% of them, i would prefer that over surgery. Just don't know if they use it for any lessons/spots or just those caused by MS.

Vitamin B12 also can be a useful supplement in this case, but that should be supervised by your doctor.

All best
Helpful - 0
1056589 tn?1273747102
Jess,
I can relate to what you are going through because I have 15 brain lesions.When the neurologists said that to me I started crying in his office. It's ok to be scared. But I have since decided that I cannot allow these lesions and TM/MS
to control my life. I try to keep myself busy. I do things I love to do. Which makes me happy. Being Happy= Feeling Better. I know thats cheesy but what else can you do. Try to hang in there.Take Care....
Helpful - 0
572651 tn?1530999357
Hi Jess,
Lesions are not biopsied.  If this were a growth/tumor that would be a different story perhaps.  

Lesions can cause face numbness- it just depends on where the lesion is located.  Each spot of the brain controls different functions all over our body.

I hope you can relax and havea good weekend.

my best,
Lulu
Helpful - 0
Avatar universal
I am getting better,  my doctor referred to it as a "shadow" the other day.   I have also spoken with several people that know people with lesions.  My biggest concern is that they will want to biopsy it.  Do they always biopsy lesions or shadows?

I am glad to hear that it is possible to have 30 lesions and still be ok.
My question is what if this lesion is causing my numb face, what do they do?

Kathy, how long does the numb face last for your son?

I never had migraines before either so that throws up a flag.


I feel much better, thanks  so much!
Helpful - 0
405614 tn?1329144114
Hi, I understand how you're feeling, and know from experience that you willl feel better if you keep yourself occupied and stop worrying.

How do you stop worrying?  Every time that worry bubbles up, tell it you'll deall with it next week.  Tell it it's making you sick and you like feeling well.  Distract yourself.  Get totally involved in a video game or reading a book or watching a movie; something truly absorbing.

This may sound ridiculous, but it's actually wonderful that you're seeing a neurologist next week; I had to wait 6 months for my latest appointment, and I also have over 30 lesions in my brain.

Things will work out.  We'll be here, and you can tell us how things go with the neurologist.  Your primary care doc will learn as you do; the neurologist will know which words to use.  

be at peace,

Kathy



Helpful - 0
1054985 tn?1257173275
Jess I can hear the panic I'm your voice just by reading your post.  I am new hear,  I find it very comforting to read posts and educate myself.  It's hard at times because you always find the worst scenrio and dwell on it.  To relax is almost immpossible when your mind is doing back flips.   The only advise I have is a qoute I read somewhere "95% of the things we stress about never come true.". Hang in there.
Helpful - 0
Avatar universal
Jess...

You should probably try your best to keep your mind occupied with other things. To put things into perspective for you, I have over 30 lesions on my brain, in several areas.

One lesion (or spot) could be the result of several different things. As some mentioned they are migraines, former head injury, and some are there for unknown reasons. (MommaQuix is gonna hate me for that one. LOL)

Try not to jump to the worst possible conclusion, you're only going to drive yourself crazy.

Like others have said, they do not operate on or "get rid of" lesions. They are scarring as a result of several different issues.
Seeing that you had a bad headache, accompanied by numbness, the "spot" could very well be a result of a migraine.

(My son has migraines with facial numbness.)

Deep breath, my friend....Everything will work out just fine--You'll see. :)

Oh, in my very humble opinion, it would be a fantastic idea to go back to work. It's the best thing for you right now. If I could work, I'd be there in a heart beat.

Hugs :)
Helpful - 0
667078 tn?1316000935
Hang in there!

Alex
Helpful - 0
Avatar universal
All I do is sit here all day and worry.  I wish I could go to work...

My right side of my face is numb so my eye feels weird.  Seems like trying to use that eye gives me a headache as well.
Helpful - 0
667078 tn?1316000935
I can not speculate on your numbness not being a doctor. Sometimes numbness is benign and goes away on its own. If you have a type of head ache causing the numbness the more upset you get the worse it is. Try to distract yourself. Do you like a TV series or music?

I am a person who gets freaked by anything medical. I spend more time worrying for nothing. I have learned to watch a funny movie, take a walk, play with my dogs. Anything to forget even for a little while.

Alex
Helpful - 0
Avatar universal
If this lesion is causing my facial numbness and headaches is there a way to get rid of it without surgery?
Helpful - 0
1040373 tn?1273687488
Please try to not freak out. I know how confusing and scary this can be.

I was told that lesions can also be caused by old head injuries.

I know it's crazy to think about lesions being on your brain but please listen to what the dr. tells you. I won't tell you to not worry because I've been in your shoes and I know how worry can consume every thought until you get an answer.

Good luck at your appt with the neurologist!
Helpful - 0
Avatar universal
They had a neurosurgeon look at my MRI and advised my primary care that I see a neurologist.  I am not even sure that it is a lesion yet.  They keep saying "spot".  Would there be more urgency if they thought it was a tumor?

I think my doctore uses the wrong words. She metions biopsies, etc but she even admitted she has no idea what it is.

If it was no big deal wouldn't the neurosurgeon say that instead of making me an appointment?

I have lost my appetite and I feel sick to my stomach since I found out last night.  My headaches are coming back.  I am now freaking out b/c  I assume these are all symptoms of a brain tumor but my husband says it is b/c I am freaking myself out.

I read symptoms of brain lesions and tumors and I suddenly have symptoms I never had before.
Helpful - 0
667078 tn?1316000935
Take a deep breath. Try not to freak out. Easier said than done. Lesions are not removed. Brain surgery is done for tumors. Neurosurgeons deal with tumors so if they are not sending you to a Neurosurgeon is good.. It is good you are seeing a Neurologist next week. He or she will be able to answer your questions.

Alex
Helpful - 0
572651 tn?1530999357
Hi Jess,
It is understandable to be freaked out about the thought of lesions in your brain.  The terminology is a bit different - lesions are not the same as growths or tumors.  Brain lesions are areas where there is scarring.  The cause of that scarring is what the doctor now needs to diagnose.

There is no surgery for brain lesions.  

Yes, lesions are more common than one might think.  Lesions can be caused by a lot of things besides MS, including lyme disease, vasculitis and migraine headaches.  

Yes, we can have lesions and not have symptoms from them - it all depends on their location.  Our brain is real estate, and location, location, location is the key.  Some spots don't affect anything while other spots in our brain control critical functions.  

There is a lot of study going on about healing lesions - the body is pretty good at trying to get in there and do the repair on its own.  When the body can't do that, there are other avenues that scientists are looking at to help.  We're keeping our fingers crossed for those discoveries to happen soon.

We have tons on information in our health pages (yellow icon, upper right side of this page) which might be of use to you while you wait for your neuro appt. next week.  Please take the time to read and learn more.  

In the meantime, I hope you will come around with any and all of your questions.  This is a great community, willing to help others understand this complicated process.

be well,
Lulu

Helpful - 0
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