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Old 06-22-2010, 01:20 PM   #1
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Mass/Cyst/Tumor in between brain and brain stem

I found out 3 years ago that I have a mass/cyst/tumor in between my brain and brain stem. It was a few millimeters when I first found out about it and now its a full centimeter as of May 2009. The only reason I found out about it is because I have had severe spinal pain in my upper and mid-back for the last four years. While trying to find out why my spine hurts they had me get a MRI of my brain. I have seen several doctors about this thing in my head but they all keep telling me its nothing. I suffer from really bad headaches/migraines, I get dizzy, my speech is getting all goofed up, my memory has become horrible, and sometimes my vision is funny. I've told the doctors this and still they say its nothing. How is the possible when I'm having problems and the thing is growing?? My spinal pain has gotten so bad that I cant work now. (I havent been to work in over three months.) I keep going to many doctors in hopes of figuring out why I'm in so much pain. With suffering 24/7 with the spinal pain (that I just woke up with one day) and dealing with all these head problems, I'm losing hope of ever having a life again. Im only 26 years old!! I should be having the best time of my life now and I cant. If anyone can give me advice or hope, PLEASE help me. I dont have much hope or strength left and these problems are literally killing me.
~Tiffany

 
Old 06-23-2010, 12:38 AM   #2
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Re: Mass/Cyst/Tumor in between brain and brain stem

Hello,
that sounds serious.. if it helps here is a number that you might call for some information on what steps to follow:University of Pittsburgh Physicians Dept. of Neuological Surgery Pittsburgh, Pa. (there is a website) 412-647-3685 i think it would help to talk to a specialist.My surgeon was Paul A. Gardner. There are many @ this location.. they all have pioneered many new surgery procedures..and they KNOW their stuff.. i spent months @ regular drs. with no answers til i was refered here. JV

 
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Old 06-25-2010, 06:51 AM   #3
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Re: Mass/Cyst/Tumor in between brain and brain stem

If you have already been and had an MRC scan for the whole brain region Incl the stem, and the doctor has indicated its nothing well that would possibly rule out an extreme mesure of an tumour occouring inside of the brain stem which could result in the more seriouse disabilty occouring symptoms.

Although do some personal research of you're own online if you can, just reading up on the different sections and areas of the brain stem itself and the upper spine to just put youre mind to awareness of its structours and functions as you mentiond you're speech has became quite impared due to this.
I hope you can find somone who will be to use and resolve this discoumfort. All the best.

Regards.

Ryan

 
Old 06-28-2010, 08:48 AM   #4
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Re: Mass/Cyst/Tumor in between brain and brain stem

anything that actually keeps on 'growing' in the brain or spinal cord just has to be being 'fed" by "something"? ya know what i mean? did they ever say ANYTHING at all about this possibly being some type of actual vascular type lesion in there(this would be the most 'common")? if so, trust me here when i say, depending pretty much on THAT particular docs level of real ongoing knowledge and experience with what YOU actually have just IS, will directly impact how 'they" will see it and how crappy your treatment can be as well? and the more "rare" anything just IS, that much more cluelessness even by who are considered some of the 'best" neurosurgeons would not even really know about if they themselves have NOT actually even treated or seen what anyone just has in a brain or spinal cord themselves? if they do not simply see whatever someone actually has, esp more regularly in 'their' practice, they simply do NOT have the very much NEEDED knowledge and experience to even just KNOW what this can mean for any given patient either. every primary doc and specialist learns sooo much more along the way from their actual patients than they do in many cases from med school even. that takes alot of ongoing diagnosising and simply seeing the stranger more rare types of possible issues or in your particular case, a possible vascular malformation(or some other type of 'mass/lesion" that can just actually grow in size at all) just exisiting where you just happen to even have this too to really even BEGIN to truely know just what this can mean for any given patient at all.

i went thru this stupid nightmare with what was a rare glob of blood vessels that in had been born with inside my actual spinal cord? one doc scared the hell out of me by wanting to actually 'butcher" my cord and the next NS actually minimized this thing to the point i assumed it was not big deal(but it was in reality a very huge deal for what it just ment for me if nothing was done to it)? but it was not til i went to the U of MN here in minnesota where i live and saw a wonderful amazing NS who just also happened to be head teaching prof along with being head of the nerosurgery dept for well over 20 years was seen. HE simply HAD a ton of experience with what I personally had in my cord that the others did not(this NS alone had actually seen and resected out more than a hundred of what i just happened to even have?), and that ONE huge thing made all the difference in the world for me and what this ment for me as well. if you live in wisc, i would seriously try and get to see the head of the neurosurgery dept there to really get the very best more educated and experienced opinion on just what the heck this thing actually consists of(which from what you stated you STILL do not even yet know) and what can be done about it and more impoatantly, what this just means for YOU now and in the long run as well. anyone who has the title of head of neurosurgery has probably at the very least seen many of what you actually have there since most people DO, as i did, head for the university teaching hospitals when they are not getting anywhere with the other more less experienced NSs out there who just do not regularly even see the more obscure/rare types of possible things that just CAN show up anywhere within our whole CNS(brain thru spinal cord?)

if you do not already have this stuff, i would seriously start gathering it up? ALLL the actual ongoing docs medical records from every single specialist you have seen and ANY types of real testing results you have had, esp any scans done, those specific rad reports too and go thru this stuff and just see what the reports state along with what all of these specialists you have seen for this REAL 'impressions' of what they "feel" this is and what they also feel it means for you too? this stuff has to by law generated as clinic notes after any doc simply sees any patient. this really can be a much more in depth bunch of info that you were never actually even told by esp the more arrogant types of specialists out there, trust me on that one. whenever you happen to see the more arrogant types of NSs for consult/evals, they absolutely HATE it when a patient presents with the more rare types of problems and will not admit 'i don't know' to ANY real patient and the patient is the one who suffers becasue of that specialists stupidity and ego too.

but the very BEST things i would highly recommend just having gone thru this type of rare crap myself, would be to first, gather up EVERY single documant generated by any doc visits along with ALL rad reports too(depending upon just who also ordered the MRIs or what, you may NOT have even been told about EVERY finding in them either, thats another rather "sick" practice that just also goes on more with the 'specialists too unfortuently),then seek out if you can that really critical opinion at the most likely place for a good Dx, the uni teaching hosps. these ARE many times peoples last resort in really finding solid answers for what they just have. it was the very BEST thing i could have done for me and my insane spinal cord glob,trust me on that one. this was also MY last resort type of opinion too. and it WAS my third opinion.

you simply NEED to find out just exactly what this really consists of and the whys in how this is actually continuing to grow and by what exactly, that is feeding this too to even create 'growth" in it? i just truely feel that a good teaching hosp IS your very best bet at finding someone who has at the very least here, seen this before and knows what it just means for you. but those MRI reports that also should have been contrasted ones, really should have given the docs SOME types of real 'clues' here as to what this just is made up of? alot shpows upon MRI esp if this IS some type of either venous fed or arterially fed vascular lesion typet thing like i had. they just are much more commonly found within that brain than the spinal cord.

i DO wish you lots of luck with finding out all you simply need to know about this. but DO get every single record and read thru them just to see what you were NOT actually even told? you would be amazed at what gets written and the little info you do not get told about as the actual 'patient'? and of course any scan repoirts too? please DO keep us posted as to what you DO find out here tiffers, marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 07-19-2010, 04:13 PM   #5
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Re: Mass/Cyst/Tumor in between brain and brain stem

feelbad- thanks for replying. I have gotten most of my records and not surprising- most of the doctors think that there is nothing wrong with me and that im making it all up. My spinal pain is worse than ever and my memory/speech problems are horrible. I write down things to remember but cant remember where i put the notes. I've seen more doctors lately and they tell me that my mass/cyst/tumor wouldnt be causing me problems nor would my herniated disc. I dont know what to do anymore. I dont want to keep fighting this pain and problems cuz its just getting worse. I have no life just pain and head problems.

 
Old 07-20-2010, 07:43 AM   #6
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Re: Mass/Cyst/Tumor in between brain and brain stem

let me
ask you this hon. did they EVER actually bother to simply even DO a contrasted MRI at that c spine and upper T spine level simply considering the 'where" of your upper back and neck pain actually is? the thing here is, unless that 'mass' or whatever the hell it is is actually impacting the spinal cord/column itself, just knowing how certain findings usually impact the areas of what we feel and where? the area that would realistically just kind of 'have to" be somewht involved/impacted here for that would pretty much have to be impacting the actual spinal levels at around the more end of that c spine level or just slightly into the thorasic level? that is why i am wondering if thru out this lil saga, any of these specialists even bothered to simply check out the more likely key areas within your upper spinal?

unless that mass/lesion is realistically more on the 'outside' of that brainstem, it really would be kind of 'odd' to be feeling what you are that far down fromthe brain itself kinda thing??

the one thing i would VERY highly advise to you is to do what i did and get to the nearest actual teaching university hosp around you, or if you live close enough, just cross that border into our wonderful state of MN here and go to the U of MN or even down south to the mayo? this just does NOT in any way shape or form sound at all like anything that should NOT simply be indentified properly in your brain so the very basic "what ARE we even dealing with here" can simply be fully answered? this IS a growing type of lesion or mass type of finding that probably WILL continue to keep growing too that needs to be found out and "something' possibly 'done" to it to put it our of circulation if this just could be some type of the more common vascular types of malformations or just 'do' something FOR you finally? unfortunetly it DOES take actually finally finding that 'right doc' who loves a challange and really just cares about their patients too to really just get the very best overall and 'appropriate" care for what any patient simply 'has? esp within the brain and IN the actual area you also have this too? i do wish i could refer you to the really maazing head of NS at the U of Mn where i saw him, but he did up and retire on me back in 06? but only after actually finding my brain aneurysm first in the still pretty small stages? that man was amazing at simply "picking up" on the little things(and this just IS from experience over many years) that could mean bigger things and that IS what sent me for that ONLY type of scan that even picked that sucker up at all since it was right in the bend of an artery? that MRA was the ONLY scan that showed it. it was thankfully coilable tho and that was HUGE.

i just cannot believe that actually even HAVING something 'solid' in your brain at around that stem level that these docs seem to feel this is nothing, esp while its growing???? but i do think your very best bet would be with the uni teaching hosps where they LOVE to see the more rare/undxed types of things and they DO use them as teaching cases for the NS dept? i just think a facility like this would WANT to dive in and actually ID something that other NS or mere neurologists cannot seem to even grasp the freaking basics of here? that is just a really sick way to treat a any human being, esp having this within your freaking brain as well? is anyone actually even addressing your pain right now like at least a neurologist?

honestly tiff, if this were me, i WOULD definitely go to the uni teaching hospitals just knowing how thery work and the 'team" of NSs you will simply have on your case? calling them and asking to get an appt with the head of NS for an eval on something in your brain that NO OTHER specialist can seem to figure out should get their attention there. this truely IS my very best advice i could give you right now hon. i really DO feel for you in all this. it just sucks when you know and your 'so called specialists' also know that there IS something there, but in all likelyhood, if they have never dealt with it of worse yet have not bothered to even ID that sucker, thats just really a sick thing to do to a patient. ya simply NEED someone who has seen or dealt with what you just have there before. and any uni hosp usually tends to see the poeple who HAVE something odd or rare but keep being blown off cuz no one seems to actually truely understand what it is or means for YOU. so they play it down? this is exactly what occured with my second NS with my spinal cord crap. downplayed to like nothing when it WAS a huge huge something that could have actually paralyzed me? pretty sad ya know? thats why that NEED to get to the most really experienced specialist IS so very highly crucial for you right now tiff. i wish you all the luck in the world with this, and PLEASE do keep me posted. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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