Both sides of neck swelling above collarbone

August 21,2012 Tuesday

 

I wish we had people coming back to update us, so I am doing my best..

I went to see the doctor-of-the-day at the Saturday morning walk in at my normal doctor's building, he doesnt work Saturday,

but I was concerned because the swelling had gotten larger. To make it short, two doctors examined. They did their best, judging the size of the liver, looking for any soreness or lumps, etc.

They went outside the examination room to "discuss". They both came back in and said "hate to say it but we are stumped".

Stumped.

six years of college, and I get "stumped". 8-) 8-)

 

During this visit they discovered that my blood pressure was 177/130 !   Do any of you have a high BP when the swelling is around?

Well I am still scheduled to see my regular doctor on Monday 5 days from now. When I called today to inquire about what I can do in the meantime to bring the BP down , she told me to DOUBLE my BP medicine. She also moved my XRAY to 9am, and my doctor's appt to 11am (both on Monday).  

Its weird. I am growing balloons on the side of my neck and I get a shrug. Tell them or show them you have BP and they are tripping over themselves to help me now.

All sort of thoughts. I hope I didn't pop a tube with the High BP, and that's what the fluid is coming from.

 

I've read how many of you went through xrays, ultrasounds, MRI, etc. And I wondered at the time why didn't you guys call them off at one point. Now that have entered this "Crazy Train" I can't seem to get off. Its like, ok, XRAYS, now, and then what, and will I say no?

 

 

Hi Toyman!

I know exactly how you feel....you wonder how Drs can just be stumped? I have now had this swelling that goes up and down for two years. The swelling in my neck never goes completely away, but it goes from being smaller to larger and when it is very large, it makes me feel like I have a tie around my neck and it is too tight. I also get at times very dizzy and nauseated. And on a very bad day, the back of my neck hurts like a migrane in the base of my skull, at the top of my neck. I have been to 42 doctors of many different specialties and they are all stumped. They call it supraclavicular swellings or supraclavicular fat pads but don't know the answer of how to make it better or what the cause is. I have become very depressed over it all, worried from missing so much work that I would lose my job. I started crying a lot because of frustration and tired of being ill. My doctor put me on Lexapro a few months ago and it has helped some. It hasn't caused my neck to stop swelling or my symptoms to go away....but it is easier to cope with all that I go through with this mysterious illness. I keep praying that one day it will all just go away and life can be normal again. I sympathize with what you are going through. It is scary, it is frustrating... a group of us on this website have been going through this for many months, even years....one day hopefully one of us will get an answer and we can post that answer for all of us. Keep us posted...good luck with your Dr appt....never give up. And keep posting! I will keep you in my prayers!

Mine are still there but I have ovarian cancer which none of you men can get so that is ruled out. No doctor can figure mine out. They change size & I think my glands just arn't working right around my neck. I don't have high blood pressure so I think that's not the cause of everyone's "gel" packs. Best wishes & May God bless us to better health.

it has been about a year since I first posted. My puffiness is way more subsided, but i do still feel uncomfortable at times. I notice it mostly when I am stressed, clenching my jaw. To add more info, last December I had weight loss surgery and have since lost over 100 lbs and have seen this puffiness is barely there now. Only gets even a tiny bit puffy when I clench. Not narrowing a diagnosis, just checking in. 

I wrote a while back that I had finally found a doctor who knew what the lumps were from (the steroids) Well, I saw her again recently and she said she was quite shocked that after 7 months with no steroids in my body, that the lumps were still there. She does feel the lumps were initially related to the steroids because 2 days after a cortisone shot, my neck completely swelled up. She now feels that it may have something to do with my Thoracic Outlet Syndrome. (I see a vascular specialist on September 5th). 

I suddenly developed this swelling, went to bathroom, nothing. Went back to the bathroom a couple of hours later - huge swelling above left collarbone , lesser swelling on right side. I freaked! Got on the Internet, decided it was lymph glands, didn't worry about it. A few days went by, no reduction, so I went to the doc, who determined I had a sinus infection and ear fluid in both ears. He scheduled a'chest x-ray and ultrasound. He also said it could be fat pad, which I thought was ridiculous since it came up out of nowhere. The x-ray was clear, the ultrasound showed a tiny benign (TINY) growth, and no enlarged lymph glands. The doctor said "I hate to tell you but there is nothing wrong with you". Like I am a hypochondriac. Meanwhile, six weeks later, I still have this insanely ugly huge swelling over left collarbone, and lesser swelling over right. I had a negative mammogram 9 months earlier. I have NOT been on steroids of any Kim's, however, I am 45 yo female, may be premenopausal, but haven't had any blood tests, since my last regular blood tests, which were fine. I have waited too long to have a pap, it's been about four years which is crazy I know. In the last two years my mother died, father died after a lengthy illness, got a divorce due to his alcoholism, my cat died, found my birth family, found out my birth mother shot herself and has full mental capacity but is paralyzed from the neck down and is in a nursing home - and I moved. I've been a little stressed out! I am a drinker, but mild, maybe once every week or ten days. I had had one drink when the swelling began. I feel all of your pain, this is miserable and unattractive, embarrassing and SCARY! I have given up on docs, they just tell me I'm female/crazy/hypochondriac. I do clench my jaw and hold stress in the area. I too am planning to try stress reduction, clean as possible eating, mild exercise so as not to aggravate anything. I too am sick and tired of the nightmare! But again, I've had no steroids, bit high stress so I guess it could still be cortisol related. Don't know! I feel for you all. My friends are shocked and keep telling me to go to the doctor! Or go back to the doctor, or go to another doctor! Something!

Hi Artwitchery,

I am sorry to hear about all of the stress in your life... I hope things are calming down a bit for you. Did you / had you been taking any kind of medication prior to the lumps appearing? That is very weird that your lumps would appear all of a sudden and out of nowhere. I clench my teeth at night also, but I'm pretty sure that has nothing to do with it. I think we all need to take pictures of our lumps on our necks and send our stories to Dr. Oz. I think if he got bombarded with it, he would have no choice but to have his team look into it. 

We're all still searching for answers... Hang in there...

Update to my posts on this page and previous one, trying to keep up to date for everyone, hope it helps.

 

I saw my regular doctor yesterday. Due to scheduling this is the first time my main doctor has seen me. He was very respectful of my researched and even took interest in this web site thread.

He did an overall exam, just like the two doctors a week ago Saturday (who ended up infamously "stumped" as they said).

 

He sent me across the corridot to XRAY where about 9 or a dozen Xrays were taken. Back to the examination room.

He went through each one and did not find anything wrong. I started to breath for the first time in two weeks. There was definitely nothing wrong with my lungs, and nothing wrong (on an XRAY level) with my thyroid.

He actually asked me what I thought it was, mostly to determine where my fears where as well as using that old saying "a patient knows his own body better than anyone else most of the time". 

I told him "ahh, I read a lot, do you want just the first 10 I thought of, joking with him". He said "give me four".

 

  I told I had thought right away of an infection in my lymph nodes brought on by an absessed root canal that took forever to heal (and still sort of hurts when I chew, but I thought that was because I still have a temp filling in and not the final crown).

I told him beyond that, perhaps something is blockage drainage of two lymph nodes near my collarbone. Maybe bone? Maybe something? I told him about how my chropractor had thought some nerves were trapped in my vertabrae - affecting my fingers just like Ulnar nerver damage (computers since 1974, always leaved on my elbows, oops, and the Ulnar nerve was crushed slowly. different story though)

I told him I worried about lymphoma, or a thyroid tumor. I also worried about high blood pressure. As I said one or two posts back that when I went in for my initial exam they found my BP to be 180/130 !  I told my doctor that I worried about that being a cause.

 

So next:

Sept 7th I go in at 730 for a CT scan, and it was noted on my sheet as this:  "CT SCAN, Neck, with contrast". (contrast means they will inject me with some sort of dye". Next to this on the paper he put  "supraclavicular adenopathy". Here is a quick link to a picture : http://en.wikipedia.org/wiki/Supraclavicular_lymph_nodes

 

Looking at this, you can see the two nodes are right where people are reporting this type of swelling.

He told me that he is headed in the direction of thinking of some sort of infection that has the lymph nodes swelling, and the swelling may also be blocking the drainage at the same time.

 

I will be back here in a week. Meanwhile I hope all of you will question will come back and post your answers when you find them. God Bless everyone.

 

 

I had been taking diovan for four years and Toprol for three. Nothing new. I also went to the dentist to see if it was connected - no cavities, no buildup, no issues. I have never taken steroids and am not on birth control. It just showed up, gel- PAC like, as some have mentioned, all of a sudden and nothing shows on X-ray or ultrasound. But it is hideous! Thanks for the sweet reply

Hi all!

I just found your blog about a condition that I too seem to have developed within the last 5 years. I'm 64 and pretty healthy, not on any drugs currently (or drink or smoke) but had been on a Porcine Thyroid for many years when I was diagnosed with Hypothyroidism. When I found these disgusting lumps on my collar bone I thought it was due to taking too much/or not enough thyroid medication. I went in to see my GP and saw the PA in the office who said I had goiters. (!) I was shocked and asked how I got them. She said overactive thyroid. ???? What the.... Then how can I be Hypothyoid? She also said they would never go away. Damn! I was totally confused. Why do we go see Doctors, they do seem to know anything and are "just practicing medicine - on us"!

The swellings are just as all of you discribe. Soft like gel packs, localized at the collarbone, not on my neck but come close to my neck, no pain and look awful! I am over weight but was never over weight until menopause when I was diagnosed with Hypothyroidism. I'm thinking it might be the horrble food quality that has thrown our bodies out of wack. Unless you eat 100% Organic your eating GMO seeds and have been for the last 20+ years. it's no wonder we're sick. Have you seen what the GMO grain has done to the population throughout the world? GMO's have ruined the soil, the plants, the animals, it's no wonder we still look human! Just check out all the reports on UTube.

Not to change the subject but as an example: Our cows are eating (GMO) grain and not grass, so they can't chew their cud, so they get acid reflux and have to be given antibiotics and they're stressed because they're cooped up in dry lots instead of being allowed to graze and lay down in clean pastures. No wonder we're growing funny things on our bodies- our organs don't know what to do with all the garbage that we're putting through our systems. So maybe that's why we are growing these gel packs on our necks.?? Just a thought....

I hope one of you finds out what we all have and how we got it and how to get rid of it. Keep us updated. Good luck everybody and thanks for starting the blog on this! 

I have the same problem but I am in pain all the time, along with being very tired and my head is throbbing from it. there are no lumps just swelling and the also goes across both my shoulders. I don't feel good at all. CT scan didn't show anything, so the doctors don't know what to do for me. Please let me know if you have any ideas of what the problem might be.

You need to go on a raw food diet and detox.
Contact Dr Robert Morse ND on youtube

Hi pj1957; I have the same puffiness only on my right side by colarbone and I too have had an ultra sound and everything turned out ok. One doctor recommended I see an ENT doc as well, I am planning on doing just that next week. What did you find out with your ENT visit.

Appreciate any insight on this problem.

bakcp

bakcp wrote:

pj1957 wrote:

I have the same thing, but it's just on the left side. It's right above the collarbone and starts at the base of my neck and ends about halfway between my neck and shoulder. I noticed it about 3 years ago and made an appointment with my doctor. When he saw it he immediately sent me to radiology for an ultrasound and possible biopsy. They did the ultrasound and couldn't find anything and told me it was a muscle. They even did a CT scan to make sure everything was ok. I got a massage about 3 months ago and the therapist felt it in my neck and asked me about it. She said it felt like a build-up of lymphatic fluid and gave me the name of someone that could possibly help me by using some type of pressure point massage therapy....I didn't follow thru with that. I had my annual check-up a couple of days ago and told my Dr. that this so called muscle was getting larger and he agreed after looking at it. He has me scheduled to see an ENT doctor.

Hi pj1957; I have the same puffiness only on my right side by colarbone and I too have had an ultra sound and everything turned out ok. One doctor recommended I see an ENT doc as well, I am planning on doing just that next week. What did you find out with your ENT visit.
Appreciate any insight on this problem.
bakcp

I am a 69 yr old woman who had gone to the dds. for a bad tooth and then had to have it pulled out. Left with no antibiotic and then gum swelling didn't go down so went back and got one. Soon after looked in the mirror and saw this swelling on left side of neck to shoulder. Back to dds. thought it was lymph gland inf. different meds. Tooth fine but fat pad is the diagnosis after going to Dr. Had all the tests and my fat pad is between my jugluar vein and caratoid artery, which doesn't sound good to me. One Dr. observ. was that area is connected to your lungs...but of course nothing wrong with them. A friend told me her mother had a fat pad in her 60's below her throat and she's in her 80's now and still has it. I haven't been sick in 2 yrs. I take lipitor, and motrin for arthritis. I really think mine was from the dds. No weight prob. other than old age flab, low blood pressure, active person. My next stop is a mammogram. I have thought about an endocronolist too. After that if nothing, looks like I'll just have to live with it.

I have the same thing bilaterally..no pain, no redness, no nothing, just fatty soft tissue . I had an injury to m y right shoulder in Feb. but this is unrelated since it is on both sides. My surgeon didn't feel any lymph nodes..I'm wondering if i should be concerned, since it never changes or goes down?