Hi. I was diagnosed with a brain lipoma (small benign---not cancerous----fatty cyst-like tumor) when I was 12, I am now 22 and have been getting sick an incredible amount. For the past 2 weeks I have been in a constant state of fatigue, I could literally sleep all day with no problems. I have had a constant headache for about a week now with no relief from OTC medications. My eyes hurt and feel like they are straining/tugging when I look any direction but straight, and they are extremely sensitive to sunlight (even when I'm wearing sunglasses--sometimes I have to wear them inside if there are a lot of windows). My vision often gets blurry but that only lasts a few seconds on and off. I have been on medication for migraines since I was 12 (that's how they found the lipoma--trying to figure out the cause of the migraines--but they are evidently unrelated) and I switched to topamax daily about a year ago and am STILL having the tingling and numbness sensation s/e in my feet and hands (mainly my feet--and sometimes it gets SO severe it's actually painful). Lastly, I have been having some chest pain and my pulse has been in the upper 120s-130s on and off for the past month. My last MRI about a year ago showed that the lipoma had grown a few cm (the first time in 10 years evidence of growth was shown)--and I was wondering if anyone knows what is going on based on my dx and symptoms?!
--i forgot to mention that I am also forgetting things a lot. The other day I forgot the gate code to my apartment I've been living in for a YEAR! I had to sit there for a long time and think about my hand movments over the keys before I finally got it right. Little things like that have been going on for a a couple months now.
I am 45 years old with a brain lipoma and have every symptom you have. My migraines with aura started in my 30s though. The tiggling about a year ago. My memory is going and I am seeing a doc for this. the neurologists tell me the migraines are not related. Have you had an eeg to check for epilepsy? The psychologist i am going to now said that the memory should stay the same as before cuz this stuff should always stay the same. get a good baseline test for memory you might want to use it later. i also had 2 mris show different things - i am not sure if it is the person reading the mri poorly or if it changed - but every doc you talk to tells us that this thing is asymptomatic - but sure is funny we have the same stuff and the same symptoms - honestly i havent found an answer yet or a doctor who truly knows anything about this rare condition - just know you are not alone
i am a 33 yr old female, w/ lipoma in corpus area of brain...i have been very healthy till this past year....confusion, fatigue, eye pain, and vision problems, head buzzing...i know its the lipoma,,,i just recently got another mri to see if its grown...i'm with you folks!
HI,my sister has had now 2 surgeries so far.. she was diagnosed with lipoma when she was only 14 and now she's 25, after having 2 suregeries done, doctor told her the tumor might come back.. it seems to regrow after a few years, she lost vision from one eye and just recently she started having lots of headaches so doctor ordered another mri for her next week.. and we'll find out and go from there.
had anyone gone through this? i would like to know.. plss
i just was diagnosed and am seeing many eyedoctors in 1 practive over the next month, along with a neurologist next month. im very scared.
my vision is all "annoying" feeling. its hard to describe! its like its blurred, but not actually blurred. i went to the ER because of the eye pain and sensitivity to light, and i was told its a 6mm lipoma in the middle area, by the 3rd ventricle but may not be related to the eye problems. its so annoying, i need sunglasses in brightstores and people think im a weirdo! im happy to know im not alone - please contact me if you have any more informaiton, or updates. thankyou.
I was diagnosed with a lipoma measuring 6 x 4 mm in the left occipital convexity about 2 years ago after having an MRI for migraines as well. Of course the dr is not worried about it, but I have MANY UNANSWERED QUESTIONS. They say it's not related to the headaches.......but I feel otherwise. If a lipoma CAN cause pain elsewhere, why can't it cause headaches??
I had been having headaches for about a month when one day I had a strange tingling feeling in my hand and could hardly move my arm. I then saw a doctor who recommended an MRI. They found a lipoma in my brain but the doctors claim that it's unrelated. It's apparently on the brainstem, a part in the lower section of the brain controlling main motor and sensory innervation to the face and neck. If the lipoma really isn't doing anything what possibly could be the cause for the constant headaches, on and off blurred vision, and strange tingling feelings in my limbs. I've had MRIs, seen eye doctors, and had many different tests done but nothing is found other than the lipoma.
Im 31 and was diagnosised about 7 yrs ago as I have had headaches quite consistantly for aprox 10 years, but for the last few months I have been suffering from debilitating migraines and hearing loss in my right ear and my vision feels strained. Im extreamly worried about what maybe around the bend, as we have 5 children and at this moment my quality of life is totally stagnant. I am yet to see my GP as it wasnt until I read this forum did I think I could have a problem, I just excepted that my hearing and eye problems maybe just a result of my migraines and they were due to stress in being a parent.
How come if so many ppl are suffering from both a head lipoma and headaches how is it they can not be linked oviously the lipoma causes pressure on the head to cause the pain...
It's nice to know there are other people out there with similar diagnosis and symptoms. . .Somehwhat comforting . . .However, I would like some answers. I'm 31, about 32, and was training for triathlons, in great health, when a pain in my neck, followed by fainting, difficulty waking and regaining consciousness, sent me to the ER on Xmas Eve 2009. They found the two lipomas in the corpus collosum, and saw growth on a skull tumor that I've had since I was about 20. I've had the headaches, fatigue, pain in my arms, hands, legs, feet, and neck/back. I've also had tingling and numbness, hypoglycemia, low blood pressure, near-fainting, and LOTS of forgetfulness. It's driving me nuts that all the neurologists, neurosurgeons, and docs I've seen, say my lypomas are asymptomatic. They've shown growth in the past six years, on subsequent MRIs, and now I'm having all these "unfixable" probs. If anyone gets any answers, please share. I went back to my running, even though I hurt, just to improve my mental health. The stress of no medical help has caused me undue depression and stress. I'm a teacher, wife, mom, and grad student, with a full-time job and two kids. I don't want to waste any more time getting zero answers!
I am 18 im going to be going to college soon an about a year ago i started passing out just for no reason. i was tested for narcilepsy, and epilepsy and neither were positive but they still gave me meds for epilepsy (turned out i was allergic to made me suicidal). they found the lipoma by the tuber cinerium and told me it was incidental. but im 6'2 about 180lb and fit but at random moments about twice a month i will just be walking and will have an extreme pain in my head and pass out. They keep passing me around from cardiologist to neurologist to endocronologist then back to cardiologist and i just dont have time for this anymore.
Hey, all together. I''m about 47 now and still living with this thing for the last 15 years. Last week I survived my third surgery at the same part. Sitting on the cerebellopontine angle it causes problems with my balance, my coordination and NOW I had a paralised Eyenerv. But like I said : had!!! Straight after the operation it''s getting normal and all the other small things are bearable. I''m insecure by walking but, in my age, life shouldn''t be a rush. I enjoy every slowmotian and I think, we all can''t find all the answers we want because off the complexe BRAIN/LIFE. There are so many possibillitys there in a body, I think you need to study the whole evolution again. The important thing is to find the right doc for the biggest problem on time. If you find one you should be pushy but also patient. They are not GOD. Also human (the most of them) and do the best they can and know.
The rest of myself, I''m working fultime, got to kids (25/22) and I saw a lot of very bad disseases during my life, so I''m glad to be alive and watch the daylight every day.
I was also dignosed with a lipoma in the suprasellar cistern of the brain last June. I have migraines alot, but last year the migraines started getting worse by JUne by accident they saw the lipoma there. As of today, after I got off all this medicians, I still have migraines just about everyday, and they are still just as bad. I do have blurry vision (scarry), my fingers and arm has gone numb for no apparent reason, also my legs to. I know that this lipoma is causing all this, especially after reading what you all have experienced. I will be getting another mri soon and I will let you know if it has grown. Good luck to all of you. P.s. I am going to a doctor @ cleveland clinic. I''ll keeping postin when I find out.
My son was diagnosed last month with a lipoma in the same area as yours. He has headaches everyday with little to no relief with migraine meds. He is in college and there are some nights the pain is really bad. I saw your post and was wondering if you have any updates on your condition. It is really frustrating because the doctors say his headaches have nothing to do with his lipoma but it's strange that his pain is exactly where the tumor is located. Thank you for taking the time to answer me back.
Are any of you on psychiatric meds? I was diagnosed with a lipoma on my brain stem a few years ago, but not until after I started taking these meds. I think it is very possible that psychiatric meds can cause these fatty tissue tumors. ANYONE ELSE FEEL THIS WAY?
I have been suffering from Migraines for over 5 years now, and Im talking like 3 a week. I feel so useless, I cant do anything! After seeing 3 spine surgeons and a pain management Dr. I saw a neurologists and was diagnosed with occipital neuralgia. Then just had a brain MRI and he found a lipoma and another cyst which he said had nothing to do with the headaches or neck pain, but after reading what you are all going through I think differently. Please keep me posted on your recovery . . . All the best to everyone. Lets get to the bottom of this crap!!!
I am having the exact same symptoms: blurry eyes at random times, A LOT of forgetfulness (I will ask fiance a question and then have to ask him again 5 minutes later), tingling, hand tremors, sleepy all the time, hard time sleeping, constant headaches.. the list goes on. I just thought I was going crazy! I am a 32 yr old female. They found a small lipoma on my lower brain stem. They say it's incidental and nothing to worry about. They also are testing me for hypo/hyperthyroidism. One test came back abnormal and another came back normal. While researching into hypo/hyperthyroidism I discovered that all of the symptoms can also be related to thyroid issues. One major cause of this is lack of iodine/iodide. Whether the doc gives me medication for the thyroid or not, I am going to start taking herbs and supplements for iodine. I will let you know if it helps!
I just found out in June that I have Lipoma in the left side of my brain. I have had headaches for years but they had worsened this summer and were more frequent. I have ALL of the symptoms stated above except for passing out, but I have had some dizzy type everything black spells. My vision is blurred even without a major migrain! Dr told me the tumor is too far in my brain to touch and that all of these symptoms that I am having are NOT related! I hVE RECENTLY started chest pains. Im thinking we all need to find someone with some research! Please keep me posted!
I am really fortunate to know that I have found some part of the population that I can at least seek out and that have many if not all of you have the same symptoms that I have and also have the same results that I have had. First of all, I have had migraine pain since 1985. In the past year they have become incredibly severe and I have been to the ER twice and also the Urgent Care three times. I generally ask for an Imitrex shot and then toradol. This is the migraine "cocktail." My medications have begun to become ineffective and daily head pain is here. I've also discovered that something that never worked in the past is managing the pain: Hydrocodone. Anyone thinking rebound, trust me, I went 2.5 months of pure he"" to not take any meds until I realized I couldn't take it anymore. I had an MRI done last week, my second or third over the course of 20 years. Low and behold there is an inferior colliculus 3mm lipoma. Of course, my practioner claimed that it's asymtompmatic. Few things I know. My symptoms are not always typical for a migraine. The lipoma was not there three years ago. Hydrocodone would not even begin to touch my headaches in the past. In fact, only maxalt and ibuprofen 1 - 3 times were per week were my wonder drugs and that is what I told my neurologists two years ago and is noted in my chart. Never needed prophylactics, etc, until the past 3 years because of the headaches 3 days a week at 1 per week my neuro put me through 47 different prophylactic medications. Hydrocodone, ibuprofen, maxalt (sometimes) are the only solutions and it generally will eliminate the pain for the rest of the day. Also, hot shower or ice on the head work well depending on the level of pain and if you have the time to sit for an hour. I would not recommend narcotics if your not strong enough to deal with the dependency syndrome. It sucks, but at this point I have dealt with it so many times that I kinda have just learned to deal with it. I do know that Dr.'s want to be able to give you an answer and when they can't they will just tell you something whether correct or not. Especially, when the research that exists may coincide with what they are telling you. Remember they also want you on the most expensive drugs possible because they get "kick backs" from drug companies. The fact is what we have is something that probably less that 10,000 people out of 6,000,000,000 have, which is RARE. There will be no research done. No money to be made. My advice is find something that relieves the pain and try and live as close to a normal life as possible (it's difficult) and don't give into Dr's telling you what they think, because they are only educated to deal with common ailments and most of the time they aren't even capable of dealing with those. Try every painkiller that exists; if you find one that works, try taking a small dose daily it may save you the headache and may relieve you much of your pain. Don't seek out narcotics because they are very contraversial and every Dr. will laugh at you and probably not believe you at least for the first 4 years. But they may be the only thing that works. Sometimes the pain itself will manifest symptoms, so if you can get the pain under control then you may be able to alleviate some of the other symptoms. Please keep posting if you find further research or medications that work. I am up to trying anything and then twice. I hope you all find comfort that you are not alone because I do. I am in continual contact with my nuero and if has any further ideas or gives me something that works I will post. Good luck and God Speed.
By the way a Lipoma is a fatty benign tumour that is generally caused by genetics and there is no research that shows they are caused by medications at this point in time. Now, it is possible they could be caused by this, but highly unlikely. The more likely answer is that you are genetically predisposed. The reasons they can cause pain is for two reasons: a reduction in the blood flow to nerves in the brain, or a reduction in blood flow creating low oxygen and hydration levels in the area of the brain where the head pain is occuring. This is why people that have lipomas in subcutanesouly as opposed to intracranially have pain. Pain from lipomas can exist and Dr's are always afraid of a lack of research. Again it's an ailment that falls from the general spectrum of what med school and what the general population experiences.
Glad I found you guys, I've a fairly large lipoma in the corpus callosum, was having seizures, absence seizures in 2007, four in a row, and no major problems until stroke like symptoms this past month, hospitalized for a while. I had jerking, shaking, fatigue, facial paralysis, ears ringing, black outs and thunderclap headaches. Of course it's all 'coincidental'. I find it so frustrating how little is known. My doctor is nice, (neuro) and says they know so little about them, but that I was probably born with it and not to worry. And I feel like a hysterical woman pushing the issue. On anti seizure drugs now. If anyone finds anyone who knows anything about Lipoma's with symptoms and how to treat them, please post.