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Jugular Bulb Mass on Mri, Swollen Lymph nodes neck same side, second op...
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Jugular Bulb Mass on Mri, Swollen Lymph nodes neck same side, second opinion??

Hi all. I am a 32 year old male who has lived with chronic headaches and severe neck pain for 10+ years. it seems to be increasing as every month goes by.
last year because of extreme fatigue, headaches, and constant swollen lyph nodes on the left side of my neck I had a series of blood tests CT scans and MRIs done. i also had a surgical biopsy done of one of the many nodes in neck which appeared negative for cancer. Also have a hardened mass in my laranx which had an ultrasound for with no follow up from docs. That was a year ago.
Shortly after had an appointment with a Neuro who wouldn't even look at my Mri images and proceeded to diagnos me with Fibromaylgia (fibromyalgia). Doctor a few months back ordered up immune system tests such as HIV, Lyme disease, etc.. as well as blood marker tests which all came back okay.
I currently have been taking Vicodin, Percocet, Flexeril, and Neurotin for the pain, but most times it doesnt even touch it and only adds to my fatigue.
Long story short.. about a week ago I had an appointment with a NeuroSurgeon, who 2 minutes into the appointment wanted to tell me there was nothing any of my symptoms presented that he could do for me, without yet again looking at my MRI ct images. This Time I recieved a copy of them on a disc to bring to appointment. Radiologist reports state Normal Normal etc.. with a few things that made me follow up a bit on my own.
On the MRI images on the same right hand side, where the brainstem/bone meet on the brain MRI it appears as a solid white MASS/ and above it a blackened area where on the opposite side it appears as bone (from my limited research the Temporal bone?) at the base of my skull. I linked it with the finding on my report of "THERE IS A PROMINENT JUGULAR BULB ON THE RIGHT WHICH IS A VARIANT."
A bit more researching this area and I have found that indeed this could be a tumor in the region of my Jugulare Foramen. My mother who had taken care of my grandmother (bone cancer), had called a few of her ex doctors/nurses, and they said to her that my symptoms sound brainstem related and that someone must be missing something.
Anyone here have any advice as to what this might be, and if it could actually be a tumor that is causing my chronic pain, headaches and dizziness?? I could follow this up with more details, or even be a bit more descriptive, but for now I am desperately seeking any advice as to what to do. I do have images of it/jpegs.
Please help. Please.
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Avatar_m_tn
Here are a few links to posted pics of what Im talking about.

http://s613.photobucket.com/albums/tt217/3dayspain_photos/?action=view&current=cc.jpg

http://s613.photobucket.com/albums/tt217/3dayspain_photos/?action=view&current=bb.jpg

http://s613.photobucket.com/albums/tt217/3dayspain_photos/?action=view&current=aa.jpg

and another on there enlarged and inverted to show contrast.
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Avatar_m_tn
I suppose to give a better understanding other symptoms that I have are:
Most recently: My whole Left side/area of my ear feels like it has some sort of pressure/numbness to it, hard to describe really, yet very annoying.
Ringing in ears.. didn't really notice it much until I focused on it, it seems like it has always been there so I am used to it.
"Off feeling" and anxiety depression issues that are heightened when I am in Pain.
Pain in my upper left chest area inbetween my 2nd and 3rd rib down towars the middle. I usually wake up with it and it can sometimes last all day. Much different feeling than that of "anxiety" chest pains. This is more specific. Honestly.
Flucuating Blood Pressure. Some days blood pressure is normal, when i am especially stressed out. Other days even when I feel relaxed it is high ex> 145/97 and resting Pulse bpm was 125ish at my last Dr appt.
Vibrations in legs. I have a cellphone that sometimes I put on vibrate, and I am frequently checking for a call coming in, even though my phone is not in my pocket. it feels almost the same but legs mostly upper I will have the vibrating spells.
Major left shoulder/arm wrist pain. Usually the worst when my headache is the worst.
Balance and dizziness. Especially if I bend over or try and turn too quickly.
Insomnia.......
History of upper neck sublexations/ numerous chiro care history, mostly for neck and upper cervical.
Ahhh the symptoms go on and on. I just want to get fixed....
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Avatar_m_tn
Pics link of MRI images that actually works

http://s613.photobucket.com/albums/tt217/3dayspain_photos/
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657231_tn?1390151580
In my experience, neurologists do not know how to read films. Only surgeons know how to read film. That is why they will not look at them. That is in general. There may be a few that know.
In my experience, things that light up are not what is important, but things that are dark are what are important. It is also important to know what is air, what is vein/artery etc. as they show up and may look suspicious.
Your symptoms may also be hormonal. Fatigue and blood pressure are often related to hormones as is blood pressure. Doctors typically do not look for it. A high pulse usually means low blood pressure - so it is odd your pressure is high - have you seen a cardiologist?
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Avatar_m_tn
Hey there, thx for the reply...
Actually my last appointment was with a NeuroSurgeon who was the last doctor that "wouldn't look at my films"
I have tried comparing the "mass/bulb" to numerous other MRI images and cannot find any that look similar. This one shows up after the contrast was used, so it does show up bright white... which I also know could be purely vascular as that is where the constrast is flowing...my veins. But medical info states that the differential diagnosis for "Prominent jugular bulb, normal variant" is Schwanoma, meniogoma...etc..
Haven't seen a cardio doctor, but that would make sense, or even a vascular type DR.
Still have all the hardened swollen glands on the same side in neck, so that along with the image is what worries me the most.
Posted a second link/copy_+paste to a page where I uploaded the MRI pics..please have a look, You will see what I am talking about on the slides that contain brain/inner ear..etc...
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Avatar_f_tn
  You need to find a new neurosurgeon who will look at your films and report and tell you what they are seeing.
I don't understand why your blood tests show everything is normal when you have seriously swollen glands.
Can you take your tests to a university neuro center neurosurgeon? I've read that many people get better care from university doctors for some reason. (Maybe they like doing research?)
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Avatar_m_tn
HA! I wish I had a local Medical University that would take on my ailments. As of right now $$ wise and all that probably is out of the question.
All I am trying to do is figure something out here. The swollen nodes in my neck, the headaches, chest pain, MRI images that I question were looked at enough or not..... I am just trying NOT to have something sneak up and kill me. Especially for the sake of my 18 month old daughter. The pain and misery with all of this has about ruined every aspect of my life, the least I can hope for is to "be there" for her growing up. ANXIETY
I have read a little bit about slow growing head/neck metastic type cancers that even give false negative results upon biopsy. It just boggles my mind that with all the symptoms and pain I present, why is it that the doctors aren't digging deeper into the swollen lymph thing. I suppose the autoimmune type tests were a start. and I don't really feel like having any uneeded operations/scars..but
It's almost like the doctors are all set up to prove nothing is wrong, and it's some unexplainable anomaly and that you are Normal from the start. Instead of taking the worst possible rare things and ruling it out backwards. I don't understand it.
Sooo many stories I have read about ongoing symptoms for years then BAM,, you have cancer, sorry we didnt pick up on it.. geesh..
thx for the reply
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657231_tn?1390151580
I have had a swollen, large protruding lymph node in my neck since the early 90's. I know I have enlarged lymph nodes from my neck, in my armpits, and in my abdomen, my groin, and now even my knees. I have an uncle that has lymphoma. It was discovered from a small growth coming out of his eye of all strange things. I cannot get anyone to biopsy the nodes anymore.  When I had a hysterectomy, I specifically asked the surgeon to remove one for pathology and he said yes, but then decided not to when he said there was no cancer (just 5 other diseases...). I totally understand how you cannot get attention for this.
However unhappy I am with this, as the docs explain lymph nodes just swell up and some people are just prone to it and it is just too unspecific - it is very aggravating to those of us who have the lymph nodes that are large. They are very into the horses and will not see a zebra when it is sitting in front of them. Things have to be ruled out systematically.
I have been told I already had one rare disease and that even though I am still sick, it cannot be another rare disease. Like I can control this.

I would just like to say that you need to keep yourself healthy as you can, get regular check ups, report anything out of the ordinary - and get another opinion on the MRI films.
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Avatar_m_tn
dude...i could have written your story...only, my blood pressure remains @ 115/70 - 120/80 unless i am in pain.  have been seeing a rheumatologist who thinks it is actually my immune system response to some unknown factor.  managing, but no real answers yet...just lortab/soma/neurontin daily to manage the pain...let me know if u get any type of clear diagnosis/prognisis...will do the same here...good luck...i feel your pain, literally
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657231_tn?1390151580
I hope you get some answers. I know mine is auto-immune too - from my lack of hormone system they think plus known auto-immune factors like hashimoto's that should not be there since my thyroid has been gone for years. I use acupuncture for the pain but it still amazes me that there is so much pain and that most docs are silly about it. I have low BP.
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Avatar_f_tn
I had an xray done when I was 5. It showed what doctors thought was a tumor on my left side. I have and enlarged jugular vein caused by being born without the bone to hold it back and keep it from growing. As im getting older now being 30, i have massive headaches, it hurts to turn my neck when it shifts positions, ringing in ears( it is enlarged up my neck and through my ear) There is so much pressure all the time. I have seen specialist for years and they don't know what to think about it. I have been a lab rat for years so I stopped going. Now it is causing other problems i think, vision and speach. There s no help on the internet for this or anywhere. Its sounds like you may have the same thing. there are very few that I know of with it. I was the first doctors had seen in the 80s.  Im looking for info to if you come across any please let me know. you can email me at    ***@****
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657231_tn?1390151580
Email addresses are not permitted in posts. You can use PM or just the forum.

You have tried the neuro route, but have you tried an ENT? It is in the neck area, and maybe they may have an idea. Just a thought - as well they may be able to address the ear questions.

As well, try the vascular route - cardiologist and see what they say about the vein? Have you ever done the halter monitor and stress testing etc?
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Avatar_n_tn
Dido with the medical history, Ive been on so many different meds, but none have helped, to include neurontin (up to 3600 mg/day) for 8 months and nothing, just the side effects of  increased fatigue and decreased cognitive function. Narcs even fail! I notice that increased activity increases my symptoms (pressure w/ heat sensation left side of head, left ear ache, left cheek numb feeling/pressure, pain left chest, soreness/pain left shoulder/arm, constricted throat, pain left/back head, increased fatigue/irritability {surprise!}).

The only thing that helps decrease the symptoms is a couple nights of decent sleep (popping a couple of valium and lying on my right side at night) and being a complete bum during the day. Then in a couple of days the pain level goes down to a 3/4.

All kinds of tests:
-MRIs (3ea) & CTs (2ea) of head and neck only show slight DDD of c6-7 & c2-3.
-Blood tests show possible stage 2 Kidney damage GFR 87 and low VIT D total 24ng/mL. Taking Vit D supplements
-Cardiologist stress test: good and cardiac catheterization: no right coronary artery but other 2 arteries large (very) and healthy so I am still good, at least thats what he said?!
-Sleep test: obstructive apnea mild/moderate, using CPAP
-I have GERD (esophageal reflux),  taking Nexium; and eczema (face and hands). using triamcinolone ointment
-Decreased hearing in left ear w/ tinnitus
-Epidurals and local anesthesia  w/ steroids have no affect
-Physical therapy w/ traction (20x), acupuncture (3x), chiropractor (3x) all increased my symptoms, especially chiropractor!

ENTs (3ea), Neurologists (4ea), Pain clinic docs (2ea), Optometrists (2ea), GPs (4ea) can find nothing remarkable.

Recently I noticed my lymph nodes on the back of my neck (Posterior cervical lymph nodes) are swollen and that has led me to this forum!

Not sure how correlated it is, but i fell and hit the back of my head a month prior to the symptoms showing up. I have been dealing with all this for nearly two years now and I am 30 years old!
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Avatar_n_tn
I will be going back to the ENT soon, now that these lymph nodes decided to pop up! Only the occipital ones hurt when I press on them, the others are just swollen and hard. Ill push for a biopsy  
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657231_tn?1390151580
Just a thought. You are rubbing steroids into your skin, You are shooting steroids into your body.

Cushing's can cause a lot of issues - you may have steroid induced Cushing's syndrome? It would ravage your immune system. It would also interfere with sleeping, cause the gerd, lower your vitamin D and well. do a lot of other stuff.

I had pituitary Cushing's. I know people that had a few shots and did not know they had a tumor somewhere and oh boy, found it. Not everyone has every symptom - but some can be nasty. Just a thought.
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Avatar_f_tn
I just have to say that I have had back pain for some years now after my first car wreck. I have had servere migranes (migraines) since the age of 8. I was in a car accident on the 21st of April and my back has been hurting me ever since. My headaches are worse. I feel more dizzy, tired, my stomach aches from the meds so I am just all over the place. They ordered an MRI and had to wait almost a week to hear back about them. The dr stil had not called to say they got them I had to bug them because I was in so much pain. I have numbness and tingling going down my legs and cant stand sometimes. My headaches are really bad too but id say overall my back hurts the worst but pain to me is like getting stabbed repeatedly. I hate pain. Im not very tolerable with it. I calle dthe dr and they said they have the results and a nurse looked at it and said the only thing she sees are swolen lymph nodes. WTF? Then said thats all she can say and they dont see anything else. What is that what does it mean and how the hell is she telling me anything. I have a Dr apntment tomorrow to come in but I am thinking how unprofessional to so that over the p[hone and you are not even supposed to tell anything or be reading the MRI results being a nurse not the DR. WOW. The things you guys are saying sounds like things I have been experienceing though and thought I would leave my comment and reguards to you all. I just hope that our kids get better medical treatment then we do or hope they are healthy enough to not have to go through all this. This really ***** and sometimes I do think that death would take all the pain away but who knows why GOD has us here. We are here for a reason and maybe we are here for the advancement of our kids and grandkids medical treatment in the years to come. Who knows but GOD will never give us more than we can bare. Hope all is well and you find help soon. Thanks LALA
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657231_tn?1390151580
If you are in the US after 24 hours, you can usually call up the place where you had the MRI and order a copy of the MRI and the report yourself and pick it up or have it sent to you. So I would do that anyway so you have a copy for your records.

There is a headache and migraine forum which may be more suitable for you.
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