Hi All...I am a 42 year old woman who was diagnosed with a Basilar Lipoma after experiencing numerous migraines in my late teens. The repeated headaches led to CT Scans and MRIs. Those scans eventually led me to undergo neurosurgery at the age of 20. The surgeons expected to find a different type of tumor, but were met with a marble-sized lipoma. It could not be removed due to location (the base of the basilar artery) and innervation. Sooo...I have lived through years of migraines which can only sometimes be abated with Relpax (and hydrocodone if I just need to knock myself out!). Over the years, the lipoma has slowly grown to the size of a golf ball. About 8 years ago, I began having significant tinnitus and 6 years ago was diagnosed with a profound hearing loss in both ears. I also randomly suffer from lightheadedness. It is amazing to me that our stories are so similar. 99% of us hear the line "the lipoma and the headaches aren't related". Really?!? If there is a study, sign me up!
Prior to 20 months ago I only got the occassional headache when I had a sinus infection. In the summer of 2010, on my way to work the entire right side of my face went slack, like a stroke. I blew it off because within 30 minutes or so it went away. In Novemeber of 2010 I experienced my last headache free day. They are not generally painful. It feels more like pressure in my head and 99% of the time only affect the right side.
Someone suggested it was a tension headache and to start massaging my neck. I rubbed the back of my neck and right where the skull ends and the muscle dips in I felt a bump. At first it was only really noticeable if I bent my head forward. I pushed on it, hard, to determin if it was soft or hard. An explosion of pain shot through my head and lasted for many days.
In Feb 2011 another episode of the right side of my face going numb and slack. This time it was very bad by the time I got to work. I was sent to the hospital and diagnosed with a TIA.
Neurologist said it wasn't a stroke or a TIA, must be a complex migraine. I explained I have never had headaches before, but now the pressure on the side of my head is with me all day. CT and MRI later I was told by Neuro and GP that the bump is nothing and there is nothing that can be done.
Since then the symptoms have only gotten worse and the bumps continues to grow. Now my entire right side of my body tingles 24/7. I have mild numbness on my right side of my body. Muscle twitching, right eye, right hand, right arm, right leg, right foot (and left ring finger - go figure). I was begining to experience confusion, forgetfulness and especially unable to remember words properly. I just start making up my own words or something that I think will sound similar. Plus my right ear is off. When I sleep with my left ear in my pillow and I hear a common sound in the house I can't figure out what it is until I lift my head up.
Still the bump has nothing to do with anything even though it is right on top of the nerves before they disappear into my head.
Another MRI and again nothing.
Diagnosed by second Neuro with occipital neurolgia. 2 numbing shots and painmeds and the bump has nothing to do with it.
3rd MRI last week and low and behold the bump (that is now painful as it is stretching out all of the surrounding muscle) has been found and diagnosed as a lipoma. Neuro looking for ENT to remove it, but still contends that it has nothing to do with all the other symptoms.
Once I get it out, I bet that my symptoms will mysteriously vanish, and the lipoma will still be blameless, but gratefully out of my neck.
I am suffering with migraines chronic migraines for over twenty years. I have a large lipoma on my lower neck. My nuerologist said its muscle tension and my p.c. said its a lipoma. My hands and feet are always numb. I cant remember directions and sometimes i cant recall my last thoughts. I have forgoten things that have happen in my sons childhood. I keep asking both of my doctors and they both continue to tell me its not related to the lipoma. I look like i have a hump on my back and its very hard not soft. They keep describing the lipoma as a soft lump you can move around. Maybe its not what they think maybe what we have is slightly different and its what makes the difference.
I am so sorry. I know how frustrating this all is. My nuerologist couldn't find a local ENT willing to remove mine. My PC said he will do his best to find someone.
I have read that plastic surgeons remove lipomas as well. I am considering them as a last resort, since mine is under the muscle I am not sure if they would remove one that deep or not.
My daughter was diagnosed with a lypoma on her brain at the age of 4, she is now 18. The lypoma was discovered after she experienced the one and only siezure she has ever had. The doctors had her follow up with MRI's for the first few years after it was discovered but eventually felt that the constant exposure to the radiation could potentially cause more harm than good. We opted to discontinue the MRI's unless she was showing clinical signs of needing one. Over the years, she had some migrains but they were treated with OTC drugs. Over the past year, she has experienced unexplained mood swings (more severe than the normal teenage girl mood changes) and depression. She saw a counselor for a little while but she didn't feel like it helped. We then ended up taking her to a psychiatrist who prescribed Lamotrogine (an anti-siezure medication) to help stabalize her moods. It really seemed to help but she is now off in college and no longer under my supervision. I was under the impression she had continuted her medication but found out recently that she had discontinued taking it. She insists that she feels fine and doesn't need it. However, after her recent visit home for Thanksgiving, I noticed that her sleeping habits have really gotten bad and her moods seem to be headed in the wrong direction again. She says that she has a really hard time sleeping. Up all night and finally falls asleep during the day. I was wondering if anyone else that has a lypoma has experienced mood swings and loss of sleep?
I too have the exact issues. Why does the Doctors not take this seriously? This brain tumor has caused some many issues for me. I feel Im losing my recall, memory and afraid that Im going to be bedridden and not know who my family members are. Why cant we get help or any answers? Can't we get help or any answers????????
My symptoms begain last year, fatigue, pain down right side of body, headaches.. Sent for a MRI they found a lipoma DR said the lipoma didn't cause it! 1 year later I'm having more server symptoms, shooting pains in arms and legs, numbness in arm and pins and needles. Memory loss(I'm only 29) loss of blance and motion sickness. MY GP is sending me for another brain scan, we will see. GP is thinking ME or MS. has anyone else been told that? X
Im 20 i found a small lump on the back of my head, i went to the doctors and was told it was a small lipoma, ive had the odd pins and needles in my hand, i also feel tired alot of the time even when i get a good amount of sleep, i just thought i was lazy and needed more sleep then others but now i dont think thats the case. Has anybody tried rubbing chickweed ointment on there lipomas? I heard this can shrink or eliminate lipomas?
Hey all! I'm 23 and have been suffering from headaches, fatigue, lightheaded ness, dizziness, and syncope for about two months now. I was diagnosed twice with a sinus infection and put on antibiotics which did not help at all. I then passed out while cooking one night for no reason. I went to the hospital and they gave me pain meds for a headache and did a ct scan and bloodwork, they said everything was normal and discharged me with a script for dizziness. After the headaches and such continued I recently saw my family doctor who found on the report from the hospital that I have a lipoma in or near the pineal gland. She ordered an MRI but said, like all of you have heard, that the headaches have nothing to do with it. I'm waiting to hear back about the MRI. I'm frustrated and no one can seem to figure out what's wrong. I've always been really healthy and active. If anyone figures anything out, please share! I'm young and don't do drugs or drink too much and I'm at a healthy weight for my height, I should not be incapacitated by severe headaches and feel exhausted every night no matter what meds I take or how much I sleep!
I'm a 27 year old female who was diagnosed last year with a small (8mm x7mm x6mm) lipoma in the pineal region. It all started when I began having bad headaches and fatigue, and several months later I began developing hand tremors (especially in the morning), and I was even having tremors that caused my mouth to tremble. I saw my Primary Care, who reassured me that I was probably just experiencing anxiety, but she referred me up a neurologist, just to ease my mind. My biggest worry was MS because I have an aunt who was diagnosed several years ago, and my tremors were accompanied by weakness in my hands. It took almost two months to get an appointment with the neurologist, and I even considered not going through with the appointment, but my husband was concerned, and he convinced me to go.
When I finally saw the neurologist, she recommended an MRI, although she said it would probably come back normal. That is when they found the mass. The radiologist recommended a CT without contrast to see if there was an calcification, and the mass came back as hypodense, which reassured the doctors that it was most likely a fatty and benign mass. The differential diagnosis was listed as a lipoma or a germinoma. I got a second opinion from a Neuoroncologist at a major hospital, who agreed that it was probably nothing to worry about, and that it shouldn't cause any symptoms. I had a follow-up MRI four months later, which showed there wasn't any noticeable growth, representing a "most likely benign" mass, although the differential diagnosis remained unchanged. It's been about four months since that follow-up MRI, and I am still having headaches and neck pain. My primary care told me I have a muscle spasm in my neck which is causing tension headaches. I also experience nausea and vomiting on occasion, and it almost feels like I've over-eaten, even if I haven't had that much. I still feel constantly fatigued, and I could sleep until 3 in the afternoon, no problem! I live a relatively normal life, working 40 hours a week, but by Friday, I'm exhausted!
I feel pretty confident that I'm okay, but the fact that I have a lesion in my brain is always in the back of my mind (no pun intended!) If all goes well I will have another MRI in October (one year since my last), and if there are no changes, then it will be safe to say that it is indeed a benign entity. Keeping my fingers crossed!
Hi, I was told in 2008 that I have a lipoma 12.0 in length,7.0 in height,4.0 in width.A Dr. at Emory in Atlanta told me its nothing to worry about,that a lot of people have it and don't know until they have an MRI.I also have Aura Migranes, diagonosed by me.After the headache, I have short term memory loss and sometimes can't get my words out.I even got lost in a store the other day, that I go to a lot.
Hi everyone. I was diagnosed with a lipoma of the corpus callosum recently. So many of the same symptoms that others are talking about. My ears are ringing, vision "isn't right" meaning I see clearly but there's a disconnectedness to it almost like my eyes are slightly crossed, fatigue, irregular sleep patterns, loss of balance and sometimes a loss of control in my dexterity, forgetfulness, problems focusing, etc.
It's a drag.
I'm astounded that the medical community can't seem to associate lipomas of the mid brain with these common issues that so many of us are having to live with, but at the same time have long standing evidence that problems with this area of the brain can cause these exact issues.
In clinical terms... I would refer to that phenomenon as: DUH.
Well, maybe some of us can join forces and reach out to different organizations or something.
I have a son that is 6 years old and has the same problem and we found this out when he was 2 and he is having same problem head aches eyes hurt and we get no answers they say its not caused from that. It must be if a lot of people is going through it.
Lipoma Lower Left Side of the Skull Base
I have a similar problem. My lipoma appeared in about a week, the doctors have argued with me stated that it is impossible for it to grow so rapidly. I am concerned that it could possibly be a liposarcanoma. I am unable to have a MRI and could only have a CT. I have a radiating pain that shoots over the left side of my skull and radiates behind my left eye. I am dizzy, lightheaded, forgetful, headaches, sinus pressure, pain in the left ear,always running into things, tired but can't sleep peacefully and the doctor said it is unrelated. Ironically, these symptoms started as some as I noticed the lump. I convinced my surgeon to remove it next week. I will keep everyone updated to let you know if the symptoms are relieved. This is so frustrating and my heart goes out to everyone suffering from this.
I have suffered from very bad migraine spells since I was two, I'm 27 now. In 2004 I began getting a daily dizziness and off-balance feeling. I would get numerous headaches also, which is different because I never get actual pain in my head. after many neurologist who all blamed my migraines one did a MRI and found a lipoma tumor in my brain .he then dismissed it saying it would cause no symptoms and unless it ever grew it was nothing to worry about. After so many drs. And so many meds that I can't keep track. They had my symptoms "managed" Still has always been a daily struggle 10yrs later. I get confusion ,memory problems, blurred vision, feelings like I just can't connect what I want to do in my head with doing it the way I think it. Now this last month I have started getting slurred speech plus the headaches are daily and unbearable to point of two Er trips. New neurologist did MRI I just got results that in 6 years no change in lipoma. I just don't understand how so many people experience the same symptoms w the same lipomas and it not be a problem. I can relate to almost all comments! I'm so young and have 4 kids I just want to be the mom I know u can be! It's nice to know I'm not alone.
have anyone heard or read about treating this disease type with "a new molecular therapy that uses targeted peptides and proteins to restore cellular function".
please google search...Peptide treatment", or the company named "Regenerative Cellular Therapy".
Intracranial lipomas: clinical and imaging findings.
"Intracranial lipomas are rare congenital malformations. The most common location of intracranial lipoma is the midline cerebral structures. The most frequently seen symptoms are headaches, seizures, psychomotor retardation and cranial nerve deficits. This study aimed to evaluate the clinical and radiological findings of 14 patients with intracranial lipoma."
I'm 25years old and after doctors discovered my lipoma as an incidental finding and them looking into it more i found a sensible explanation for ALL THE ABOVE MENTIONED SYMPTOMS! I have an appointment with the neuroscience dept on the 24th of this month.. Do any of you have any advice about the best way to get the surgeon to tend to it appropriately? I want it dealt with the best possible way there is!
I AM AMAZED THAT SO MANY PEOPLE HAVE THE SYMPTOMS I HAVE! I'M SURE IF DR.S DID A RESEARCH WITH PEOPLE WITH BRAIN LIPOMAS THEY WOULD FIND THERE ARE SYMPTOMS! I BLACKED OUT AS A TEEN, SUFFERED FROM HEADACHES AND MIGRAINES AND VISION ISSUES. HAVE FATUGUE AND PAIN IN MY HEAD BUT DR'S JUST WANT TO THROW MEDS AT ME AND TELL ME THERE IS NOTHING THEY CAN DO ABOUT IT, I AM CURRENTLY TRYING TO FIND A NEUROLOGIST WHO WILL LISTEN AND HELP ME. IM 27 YEARS OLD NOW AND NEED ANSWERS!