Brainstem lesion?

[jensequitur]

Howdy, folks...  Just doing my usual thrashing around and wishing I'd remembered to bring my cervical MRI films to the neurologist.  As always, I'm telling myself I'm wasting my time and trying to do the radiologist's job, when I should just trust him and not worry about it.  But I can't!

So I won't bore you with the details.  Just chime in if you've had a brainstem lesion, and if so, have you experienced any unexplained shortness of breath or weird hearing loss.

[jeffspikoli]

I had a severe head injury in my childhood.  In September 2014 I started having health issues, pain by Jan, 2015 and seizures in April, 2016.  This has derailed my life as I have yet to have been treated for the obvious broken arterial structure in my pons.  The interior carotid artery is clearly displaced from the paralysis inducing head injury.  Pain, nausea, vertigo and seizures (oh, my!) and still the doctors all say it is all in my head, DUH!  I am starting to think that they are a village of idiots and refuse to listen to my health history because the health records from 46 years ago are long lost.  I have read much about brainstem lesions and believe that I have issues with them.  I have read more than one article that states they cause cognitive impairment (dementia) and hyper sexuality.  I always figured I was horny all the time because I am a man and just wrote it off.  All that has changed since I have become very sick.  I'm in surgical recovery right now for a detached retina which I believe was caused by lack of blood flow in my brainstem.  Your eye gets its blood flow from the same arteries your brainstem does so it just makes sense.  The doctors have to be right and refuse to listen to the physicist with 3 patents in the marketplace, 2 degrees and a very scientific train of thought.  Although neurology is a complex subject it is no more or less difficult a science than physics.  I can't do my own brain surgery so I have to go to the doctors.

[sbh2781]

My mother has ha MS since 1989. She recently had undergone a minor surgery to have her baclofen pump replaced. A couple days later the nurse went to check on her and found her unresponsive. They took her back to the hospital where she is now in the ICU. Unfortunately the doctors there are horrible, and I have been the one to find everything out and point them in the right direction. They wanted to intubate her because her breathing was shallow, they failed to notice this was only while sleeping. Once I refused the intubation I told them to test her for sleep apnea, sure enough they then saw the pattern also and agree. With she has had random periods of being able to communicate with us and not being able to. I also found the pattern in this....when she is in the lying down position she cannot communicate. At times she looks as though she wishes to speak, but can't. The minute her bed is put to a sitting position she speaks freely. In doing my research I found out about brainstem lesions. Luckily I happened to have her MRI disk that was done a few weeks ago, and though I am no specialist, there is a mass in the same place on several of the slides. Has anyone ever heard of these big of changes just by changing position? I am worried because as much as I look I cannot find anything that matches these symptoms nor anything telling me the sevarity of this. I plan on taking up with the ICU doc today, however they have been less than cooperative on many things that I say to them. They appear very errogant and think I am just a family member who doesnt know what she is talking about.

[motherteresa293]

HELLO,  I WAS DIAGNOISED WITH MS IN 2010 YET HAVE HAD WHITE MATTER DISEASE SINCE 1999 YET MY DOCTOR TOLD ME I HAD BIPOLAR DISORDER AND WOULD NOT EVER TELL ME THAT THE ACTUALY MRI SAID "WHITE MATTER DISEASE: BECAUSE HIS AIRFORCE FREIND WAS GROUNDED DUE TO THEM SEEING UBO'S ON HIS MRI AND HE WAS SAID TO HAVE MS BUT THEY FOUGHT TO GET HIM BACK IN THE AIR FLYING SO MY DOCTOR AT THAT TIME AND TO THIS DAY SAID I HAD BIPOLAR BUT NOW THAT I WAS IN THE HOSPITAL FOR A MONTH WITH NUMB ARMS A LEG I COULDNT MOVE, OPTIC NEUITIS, AND TREMORS SO BAD AND OVER 300 LESIONS AND SOME ON MY BRAIN STEM, ACTUALLY CONFLUNT AND WIDESPREAD THROUGH OUT THE ENTIRE BRAIN, THE DOC SAYS I HAVE MS AND BIPOLAR NOW! DID YOU KNOW THAT MS MOCKS THE SYMPTOMS OF BIPOAR MOOD SWINGS. MY MAIN CHIEF PROBLEM IS DECISION MAKING AND FORGETTING. I HAVE POST ITS AND WRITTEN DATA EVERYWHERE . I WAS ORGANIZED AND NOW I LOOK LIKE A HOARER! PLEASE REPLY ANYONE WHO IS LIKE THIS. I HAVE TREMORS, BLURRED VISON THAT BURNS SO BAD, BLURRY DOESNT  BEGIN TO DESCRIBE IT, AND YESTERDAY I LOST SIGHT IN MY RIGHT EYE BUT THE LEFT IS THE ONE THAT HURTS AS IF I HAVE A STICK IN IT. WHAT A MESS. I WENT ON BETARURAN AND TO NO AVAIL. IT DID KNOCK OUT MY THYROID SO I AM ON SYNTHROID NOW FOR THE REST OF MY LIFE AND IT CAUSED ME TO HAVE SEIZURES SO WE HAD TO STOP IT BECAUSE OF SEVERE DEPRESSION AND ALL THE ABOVE.  I SUPPOSE I HAVE A GREAT DEAL OF LESIONS SO THE NEW MS SPECIALIST PUT ME ON TYSABRI ONCE A MONTH INFUSIONS AND THATS REALLY SCARY DUE TO PML FROM THE DRUG IF YOUR JC VIRUS ANTIBODY POSATIVE. LET ME KNOW HOW YOU GUYS RELATE TO MY COMMENT. MOTHER TERESA

[Quixotic1]

A couple of months ago I wrote a post describing the cranial nerves II through VIII or so and what they did and some of the lesions that can result from them.  I hope someone can find it and send it up for me!!

All the 12 (and some researchers think 13) Cranial nerves exit directly from the brain (O, I and II) or from the brainstem.  Because this these nerves are considered part of the central nervous system even though some of them go out quite far into the body.

Lesions on the brainstem tend to be very symptomatic because of a couple factors.  One all the fibers passing through as "eloquent."  Also there are many "nuclei" within the brainstem.  Nuclei are gray matter clusters of cells that act as "transit hubs" for the intercommunication of many, many nerves.  The three cranial nerves that control the very exact movements of the eyes and the pupils (III, IV, and VII) all intercommunicate via these nuclei.  Also the brainstem controls a great deal of the balance and equilibrium functions of the body.  So ,little lesions, can cause big symptoms.  Yes, tipping over is usually a brainstem problem.  

DB is right.  INO is caused by damage to one of these nuclei that allow intercommunication between those three eye muscle nerves.

You may not see all the lesions that are causing problems.  Even tiny, "invisible" lesions in the brainstem can cause bigtime symptoms.  When I developed Trigeminal Neuralgia (neuropathic pain from the CN V) my neuro got new 3T MRIs.  He said, " Well, I dopn't see a lesion causing the TN.  That's good.  You don't WANT a big lesion in the brainstem!"

The point here is that the 3mm lesions counting toward the McDonald criteria (and even visible lesions at all) are big lesions.  This is a further remark toward the fact that most of our lesions are not visible.

Jen, If your neuro won't venture a guess, it's likely because he doesn't know.  You might, with your intellectual curiosity, be happier and more at ease with a more knowledgeable and forthright neurologist.

Hope this helps.  And thanks for your addition to the Welcome Thread!

Quix

[jensequitur]

Interesting... the vestibo... whatsis is responsible for hearing and balance, and I've had equilibrium problems for some time now.  (Keep tipping over unexpectedly, and I'm not sure how vertical I am with my eyes closed.

You know, maybe it really is time to look for a new neurologist, one who's more in touch with MS symptoms and problems.  I'm getting tired of trying to figure this stuff out, and when I ask the neurologist, he never wants to commit to any particular cause, or even try to venture a guess.

[doublevision1]

I asked my neuro about the 6th nerve as my orthoptist keeps saying I have 6th nerve palsy and that is causing my diplopia.  But my neuro says it is caused by INO, and is more complex, involving more than just the 6th nerve.

INO is caused by demyelination of the MLF (medial longitudinal fasciculus).  Cranial nerves III, VI, and IV are primarily involved.

Re: your hearing, I was wrong about the 3rd nerve. It is actually the 8th (vestibulocochlear) that I was thinking of.

db

[jensequitur]

Just bumping this up...  I've asked this question on another forum, and a couple people have told me they've had breathing and hearing problems - but theirs is much worse than mine!

[jensequitur]

Ooh, Tammy, that's not cool!

Of course, it's very difficult to trace symptoms back to specific locations in the body.  It's much easier to say that because you have this lesion, it explains why you're having a particular symptom.  (Like my tremor, for instance, is most likely caused by the cerebellar lesion.)

Hey, DB, I just learned that damage to the sixth nerve is responsible for double vision... so your lesion is pretty close to my mysterious white spot.

[wingnut19]

I also have a brain stem lesion and as far as I know it is the cause of me having developed CENTRAL sleep apnea.....

I stop breathing between 20-30 times each night...   :(

I have been told that my brain doesn't send the "signal" to my body to take a breath while sleeping.  This is much different from Obstructive sleep apnea.  I have no external issues that inhibit my breathing. (Which means that something like CPAP would be totally useless in my case)

To be honest, I have no clue what other of my symptoms are caused by this lesion.

Tammy

[jensequitur]

Hah!  Cranial nerves...  I just did some looking, and that mysterious white spot in my brainstem is right about where the facial nerve (VII) would be.  So either it's just vascular interference causing a white spot in the brain... which of course I'm too inexperienced to judge... or it's a lesion at the facial nerve.

[doublevision1]

I do have a brainstem lesion, and as far as I know the only symptom I have that is associated with it is my double vision.

No shortness of breath or weird hearing loss.

I believe one of the cranial nerves, the third I think, can affect hearing and is associated with brainstem lesions.  Cranial nerves III and up originate from the brainstem.

db