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03/20/2011 08:33 AM

swelling in neck/shoulder area

teenie
Posts: 39
New Member

Hi everyone, I have a swelling that has been growing for about 4 years in the part of my neck right near where the shoulder starts near the clavicle area. It is soft but deeper inside is harder and hurts like the devil to touch deep down. My VA doctor said it needed to come out but the VA surgeons wouldn't touch it because of it's location. Anyone had this swelling in the neck? Thanks, T
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03/20/2011 01:06 PM
wildexpectation
wildexpectation  
Posts: 105
Member

Hi teenie,

I got my dx. when I had a sudden enlarging of lipomas all around my neck and shoulder areas. Front and back. At the same time they came out on my arms and went from one to 50 or 60 that's on both arms. I'm sorry to say that other than pain control and ultrasound to make sure it is a lipoma that there's not much else I have found to be done.

I had an angiolipoma removed from my upper left arm and have an overgrowth of lipomas all around the sx. site, but none in the exact spot. I have 3 large scars on my upper shoulders just below my neck (they are all horizontal, it looks like somebody tried to remove my head a little to far downLaughing ) and sorry to say for ME and you that I have an extreme overgrowth not only where the others were removed but all around the areas and continue to get more everyday and the ones I already have are getting much larger. Sorry for this news on me, but everybody's different so don't see all the down side, you still probably have some options out there. So, don't you dare give up and thank the Lord for everyday you wake up breathing because that is a truly beautiful day no matter what the weather or pain.

Tender hugs your way friend,

wild


03/20/2011 05:54 PM
keeter

Teenie, wild is right about the recurrence. It is possible one or more will grow back so you have to think about that. Why does the VA doctor think it should come out? Is it causing any problems? I would expect there may be some risk removing it in the neck area which is maybe why the surgeons don't want to do it there. A tough one to call.

Hugs,

Diane


03/21/2011 06:56 AM
teenie
Posts: 39
New Member

Hi, the VA dr. said it had to come out because she felt a lump down deep under the swelling and wasn't sure it was a lipoma. I am not interested in any surgery and will wait and see what it becomes.With dercums it's a wait and see until the lumps get in the way.Now whether it's a lipoma or a different lump, that's where this disease gets in the way.We do what we can my friend.hugs, T

03/21/2011 07:10 AM
Margie
Margie  
Posts: 739
Member

Hi Ms T

Hmmm...I'm not one to jump into surgery or unnecessary meds but if he's concerned about the lump is there any way he can do a less invasive biopsy to confirm that it's a lipoma. Chances are high that it is, however personally, I'd make sure.

Be well and thinking of you!


03/21/2011 09:43 AM
keeter

That's what I was thinking, too. Why can't he do a biopsy to check? Seems way less invasive. Keep us posted.

03/21/2011 11:25 AM
Kattamaki
Posts: 15
New Member

Do you think it would be possible to get rid of the soft parts via liposuction? I have never had any of that done, only a biopsy in 2004, when three lipomas and a muscle part as big as a wooden match were taken out. ( by a plastic surgeon)As to the swellings, I have a so-called bull's neck, a rather large and soft hump that I always cover with a scarf.

I wish you all the best and good luck,

Kattamaki


03/21/2011 01:13 PM
teenie
Posts: 39
New Member

Well Margie, it's like this, the VA has such a lack of communication that they barely remember me day to day much less know anything about Dercums. My angel of a Dr. in R.I. was just beginning to look at the Dercums when I moved down here and have had to begin all over again. I'm slowly getting to know the Drs. and have been given pain med. to start a treatment, Neurontin. I will call and make an appt. with my primary Dr., a man who is evasive and stares at his computer..I've asked for a lady Dr. Wish me luck..hugs and thanks

Post edited by: teenie, at: 03/21/2011 01:14 PM


03/21/2011 03:56 PM
Margie
Margie  
Posts: 739
Member

Hi Ms T - yes, keep at it and do try to get a doctor you have more confidence in. I think that if they are advising removal of anything...it is wise to get a 2nd opinion and no doctor has the right to question or deny this right. I would try for a biospy first. Sending you a hug back with wishes for Lots of LUCK...not that you need it but just to make your heart smile.

Kattamaki

The conference being held this spring in Chicago is talking about liposuction with respect to lipedema and dercums so I anticipate that those attending will be able to report back some new and much needed information. Hold tight until we know more. Also, I've been thinking about the german written at the bottom of one of my posts and silly me, I just used the computer to do an auto translation. I didn't remember when you first mentioned it because it took so little effort that it slipped my mind. I thought it might someday help someone but since I usually have to work so hard to try to translate something into german ... and this time I cheated...well I just forgot.

Sorry, I guess sometimes brain fog is foggier than other times. Thinking of you and wishing you well Smile


03/22/2011 01:39 AM
Kattamaki
Posts: 15
New Member

Hi Teenie,

The only method to use when seeing a "new"doctor is, to have a short and precise discription of your illness to hand him. We cannot expect every doctor to know all of the 5,ooo and more rare diseases, however they should be open and know where to find more information.There is so much on the internet. I would also put a list of the possible links on that paper. If you yourself are well informed about your illness, a doctor will perk his ears, besides knowledge is a part of healing.Hope I was not too open for you!!

Very best wishes, Carina from Germany

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