Not Sure What To Do With This Bulge In My Neck

[Maxine]

Not sure about this bulge in my neck. It actually starts on the side of my neck and runs between my collar bone and the middle of my neck. I noticed it today while out with my husband. I had my purse on my shoulder, and just thought it was my muscle bulging from the stress my shoulder strap was putting on the area. I often just carry my purse with my hand, due to the issues with my neck instability, and other problems. My husband sometimes has to carry my purse. Thankfully he could care less what anyone thinks.

Well my husband noticed the bulge wasn't going away. The pain at the base of my skull that I have had for a couple weeks radiates down that side of my neck, but I didn't relate the two previously, and still don't know if the pain in my lower head is from that, or if the problem with the instability is causing some swelling. I have no idea, but at first I felt a little stunned, and this pain seems to be on that whole side----radiating at the base of my skull on the right side, up to my temple, and down my neck. I didn't notice the bulge before today, but had the pain in the same area. I always wear mock tyrtle necks cotton shirts, but today I wore a button down shirt because it was warm. I wear something light under it, and keep it buttoned low. When my purse was pulling down on my shirt you could see my neck, and the bulge---

Maybe it's nothing. Perhaps something I strained. It does feel like someone is twisting that part of my brain----then the sharp shooting pains I talked about on my previous posts. I called my PCPs office, and he suggested celebrex, or the generic. His secretary is not well versed it seems in anything I have been telling her to relate to my PCP. She doesn't say so if she does. I told her I'm not so much concerned about the pain, as I am of what is causing it. I don't want to completely cover it up, as my pain is what helps be watch my body mechanics. I take tylenol, and use ice when it gets bad. I can't handle narcotic pain meds. He mentioned Johns Hopkins, and I was going to wait a while and see if this passes, thinking maybe I just strained something. I have had issues in the past, but not quite like this, or as consistant as this has been. Then my PCP throws me completely off discussing possible NCS episode when I fell off that last basement step and injured my left ankle, right knee, and the top of my right foot. They are all still pretty sore. The bruise on my left thigh is almost gone.

I don't know what the heck is going on here, and my POTS seems to be a little worse----or my OI anyway. I don't know if this is because of the instability or what. I think I just strained something, but I don't like it hurting in my head, and wish I knew if the two could be related. No one here in this town knows a thing about EDS, so I wouldn't know if it's related to that either. As I mentioned in my other post, I have contacted Johns Hopkins, but not looking forward to jumping though more hoops to go there. I'm tired-------------and would you believe we are getting my kitchen remodled---------BAD TIMING, but we had to get the low rates while we could, and I do need a more user friendly kitchen for my EDS. How it thee world am I going to deal with all this? My husband and I do not have any support locally, and I just want to sleep my days away, but continue to get up and fight all of this daily.

Maxine :0)

[Maxine]

can someone edit my title changing next to neck----------?

[Sunfish]

already taken care of (before i'd even seen your note here).

hope you are able to get some better clarity & answers - as well as some relief - sooner rather than later.

melissa

[firewatcher]

Maxine, With Hasimoto's are you sure it is not a goiter? It could explain why your OI is bad. It may not be mechanical (skeletal) at all, there are several glands in the neck (lymph nodes too.) But perhaps you should get your TSH checked. Goiters don't have to be painful or unilateral. Just a thought.

[Maxine]

Thank Sunfish and Firewatcher.

The swelling is further over -----------------------it's over the vascular bundle on the right side of my neck.

Along with it I have a headache, and pain in the region of swelling. It's difficult to hold my arm up to do anything.

I'm wondering if it's just part of the EDS, and I didn't notice it before. We can get all kinds of swelling around different joints and ligaments, and the area of my neck is one area that is having a lot of trouble lately. It's probably simple swelling from the issues I'm having.

I will get my thyroid levels checked too--- . I'm about due for this anyway---in fact I think the last time they were checked was just around a year ago. Everytime I get them checked the range is always normal. I have never had a problem adjusting to my synthroid. It just brought my levels to normal, but I had to increase the dose twice. I'm now on .75.

Maxine :0)

[ajw4790]

Maxine,

Hi! Sounds like you are going through an awful lot again. I wish things would calm down some for you!

If you can post a picture that might be helpful. (not sure how easy it is to see)

From what you described I was even wondering if it was your SCM (sternocleidomastoid muscle)? It almost seems like a while ago someone posted on here about a semi-similar problem and it was something about how their SCM some how tore and was causing a bulge in the neck. I am almost thinking it was someone like Williows???, but I am not sure???

If it is something like that it could cause further instability, so be careful!!! If it something like this it is likely EDS related,, and none EDS drs. may just not "get it" or understand. A PT also may be able to help if it is a muscular issue.

I hope you are able to figure it out soon!!!

[ajw4790]

Hi,

I just tried to do a quick search, but did not come up with much. Here is a link to a ppt that has an image of a child with torticollis (which involves the SCM) and the bulge it can create on ones neck. I realize it is a child, but I did not see much on this in adults. But, I figured if the location was about the same that it may help to narrow things down.

I would seek medical attention for it on Monday. If none of your drs. are helpful you may want to check with an ER. It is something that can happen after trauma (whiplash etc), so the ER drs. MAY actually be semi familiar with what that would look like...

Just my personal thoughts... I wish you the best at figuring out this latest puzzle!

Link: (takes a while to load) http://www.oucom.ohiou.edu/dbms-witmer/Dow...tho-anatomy.pdf

[dizzygirl]

good lord maxine you have so much going on i hope that you get some relief from all of this. I dont have any words of wisdom on this particular matter.. but wanted to offer words of support :0)

love,

linda

[Maxine]

Pretty interesting stuff ajw4055. There's a little more swelling, as it looks a little bigger. My head hurts on that side also, same side I've been having problems on.

Not sure what to make of this, and I dread calling the Doc's office on Monday. Maybe I'll have my husband call for me monday------------ Sorry, I'm just sick of that same tone I get, although this Doctor/PCP is understanding, his secretary is not well versed, and has difficult to talk to. She doesn't talk.... I don't know how to explain her. She'll do anything you need though. I just don't know how to read her, and have no idea how she relates information to the doctor.

Thanks for your support Dizz---

We need to go to bed. We went to my sister in law. She is the one that was married to my brother who just passed away. It's been so rough for her, and her daughter and son. We had a nice visit, but we were there late.

I don't think there's an ER anywhere in this town that will have a clue with this. The moment I give my history, their whole tone changes---------------I'm the woman with the overly dramatic issues------------

If I go, they'll have to call my EDS doc, Dr. Grubb, or my orthopedic surgeon----------------------someone that can make some sense out of this for them.

It's getting to the point that I don't want to do anything because it's takes such an effort, and I get so worn out----physically AND emotionally.

Maxine :0)

[firewatcher]

Maxine,

Call them ALL!!!!!!!!! Go tomorrow! Don't bother explaining to the secretary, you've got to get this figured out! It is important to your health and the emotional state of your family. Go where you have to and take care of yourself! If this was a typical POTS thing, we would all say wait, but this isn't! Take someone, anyone with you and get it solved or at least treated!!!!!!!!

With all the support and fire I can put in your belly!

Jennifer

[ajw4790]

Maxine,

How are you doing??? I hope you found something out today!

Keep us updated!

[Maxine]

Thanks again for all your replies and support, and thanks for checking up ajw4055 Of course I called my PCPs office at about 4:00pm, and I talked with the secretary, and she said she would let him know about the swelling in my neck----bulge, or whatever you want to call it.

I don't really think anything will be done about it. I asked if the doctor was going to order the CT scan, and she said that the new scan won't be in use for two weeks. You would think we're in some small town somewhere---this new 64 slice CT scan machine will be added to one of out biggest hospitals------geeeeeze..........

It's still there, and it feels like a little pocket of fluid. My head still hurts, and it's making me feel pretty sick---more then my usual junk. Today I had to take my sister in law downtown, and while I waited for her I called the docs office.

We'll see if I hear from the doctor tomorrow, and if I don't then my husband will call, because he's worried.

I still have to fill out appt. request form for John Hopkins, and get a sumary of records together for them.

I'm not sure how this will turn out, if anything. I'm not happy with the progression of my problems at all, and meanwhile my hands get more clumsy, and I continue to shuffle around while I feel the dagger pains shoot into my head.

Take Care-------I'll keep you posted.

[tinkerbella]

I find the best docs will let you bypass the nurse/sec. and I send a personal email that way I get my message across instead of playing telephone, I got tired of too many messages returned to me all screwed up.

I wish you the best MAXINE! I know our lives get soooo filled with drama, that sometimes I have to laugh, not at you but at just how complicated life can get living with this medical condition that is really just coming into light. In fact, if it wasn't for my great sense of humor I'd probably be locked up in the psych ward right now. My own weekly drama could be a sitcom. Maybe we should create one, and teach this world what it's like to walk in our shoes.

So be well and don't be afraid of what anyone thinks, if you have to just write a letter and bring it and let the doc the read what you've have to say do what is the most time saving, yet gets the point across. I use check lists. All my visits are long ones, I feel very blessed that we have doctors out there with kindness, patience, in a time when most spend 15 mins with you.

Be direct, it's your body!

[Maxine]

Thanks BellaMia,

Yes definately, you have to have a sense of humor sometimes.

My PCP is old school, and doesn't e-mail, at least that I know of. He doesn't have a nurse or medical assistant, and he takes blood pressue himself. He's definately one to look outside the box, and will work with me. I think he's a bit overwhelmed with my specific situation, and I'm not sure what he can do for me.

His secretary called back and said he wants to see me to look at the bulge on my neck. She said Friday or Monday. I told her I'll be in Monday, so my husband can go with me. That's his day off next week. Days off with the post office rotate.

I took my post that I wrote in this forum with me to my last appointment and used it as a reference. I think he felt overwhelmed, anddidn't know where to begin.

Hopefully we can work together and get some answers on how to better treat my conditions. He will send a referral to Johns Hopkins.

I'm getting another virus--- Hopefully it won't be bad this time. I don't need this to complicate things further.

Maxine :0)

[ajw4790]

Maxine,

Hi, I am glad that you have an appt. set up. Has the bulge increased your instability? That is what worries me. Could you call the EDS dr. to see what he advises? He may be more familiar with it and how to treat it in your scenario? Does it seem to be getting better or worse?

I hope you get some answers soon! Take care of yourself!

[Maxine]

Thanks ajw4055---

The instability has been getting worse over the course of time, but the pain seems worse since the swelling-------or maybe the swelling came about since the pain. I have had those sharp shooting dagger pains for a while.

I'm trying to put it together. It seems worse since I fell off that last step. But one day when we were coming back from the East side of town we hit a bad POT hole in the street----(seems funny saying "pot hole", since so many of us talk about being in a "POTS HOLE"). Anyway even in out newer car we felt it bad. I had my hard cervical collar on, but my whole spine felt the shock. When we stopped at the grocery store on the way home, and when I got out of the car, my mid back felt it. I though I was in big trouble as the pain seared through to my abdomen. It passed, and I continued to go. The disk on t-8-9 is gone/dessiccated, so I have bone on bone. I'm sure that part of my back didn't like the pothole.

The shock of hitting that pothole affected my whole spine -------even with the hard collar on. I was so mad about it that I wrote our mayor about it. Our streets are so littered with them----it's about time I had my say about it anyway.

The EDS doesn't help either-----if the joints and ligaments were held together better I wouldn't have to worry about every little move I make.

Maxine :0)