Swollen neck glands

Hello Everyone - I wonder if anyone can help with this? All views welcome - after pHPT, I can take it!
 
I've had a terribly itchy scalp, and swollen glands in the side of my neck opposite the side where the adenoma is for 6 weeks now - on the side of my neck and under my chin. I have to lean to the other side in an armchair to try and not lean into the pressure that I feel in that side of my neck. I haven't felt under the weather (so no infection) and I have no infection/inflammatory blood markers, and the GP is not unduly worried. He says that he cannot see that the same side of my actual face is swollen there, although my hairdresser had a fit when she saw how my face seems to be falling slightly to that right side, due to the puffiness of my cheek.
 
The occasional fleeting (sometimes "electrical" feeling) pain I have across my collarbones, on the inside of my right elbow(same side as the glands) and on the inside of my right knee have been dismiss as "probably arthritis-related", especially as my right collarbone seems to have grown and my left one sunk.
 
My cousin (her father and my mother were siblings) is now in remission from late-stage multiple myeloma (having had her stem cells replaced, etc). She has only just found out how late the stage was, but is just happy to be in remission now. A protein electrofluoresis test done recently confirmed no myeloma for me (phew!) but pointed out that my IgG level was low, and as IgG's make up 73% of your gee-gees, then that level must be low (actual level about 5.3 in a range of 5 - 16). Needless to say, I am worried now about the possibility of a lymph-related problem in myself, mainly because if there is a lymph problem then perhaps I shouldn't be having surgery to remove the pHPT adnoma.
 
I tried to run this past FP yesterday, but his reaction was, let's get the adenoma out and see how you feel after that. Good idea, but not if the surgery is going to allow bad lymph gland cells to access all areas, so to speak. But he is not the man to ask to diagnose any sort of lymphoma - not his field - I understand that.
 
So I'm trying to get someone to take my fears seriously, so I can happily commend myself to FP's expert hands when the time comes.
 
I saw the nurse practitioner this morning and told her the whole story. She has made me an appointment this afternoon with Dr Woko. Luckily, he is the locum that first took my pHPT fears seriously and instructed the first US of my neck. I shall be happy to see him again to update him on actually having had a diagnosis now of the PTH adenoma that I feared I had when I first spoke to him some months back.

I also want to ask him for a referral for am X-ray of my collarbone/shoulder area to rule out an arthritis-like cause of the collarbone pain. If that can be ruled out, then I need to be able to rule out a lymph problem. I have rather a lot of the symptoms on the Cancer Research list of warning signs for lymphoma: itchy scalp, dry cough, breathlessness, drenching night sweats, periods of high heat in the daytime. "swollen glands that return intermittently over a long period of time unrelated to colds/flu/illness, head pains, "warning signs are sometimes very subtle and minor such as swelling in face, chest or neck", loss of appetite, fatigue (and all those dear little PTH symptoms that everyone says PTH does not have).

QUESTION: does anyone have any experience/ideas of/about lymph problems?

I'd be really grateful for any input.

Love from Tigerlily xxxx

Hi Tigerlily and everyone,
The last few days have been a little busy and I have only had chance this evening to catch up on posts.  I can really relate to what you are going through and as yet I do not have any answers as to what is causing my own neck  lymph node to swell.  I know how frustrating and worrying it is because I am in the same boat and although I have been told it looks like a reactive lymph node I still get very stressed at times and wish I too could find an answer.  I have theories and that is all,  trying to prove any of them seems almost impossible.  I am convinced it is related to PHPT.  This gland has now been enlarged and sometimes tender for over a year now, there is a swelling immediately above it which runs up towards my jaw and it may well be connected to my submandibular gland.
I have oral lichen planus in my mouth since last October, there is some thought it may be triggered by low vitamin D.  The neck lump appeared at roughly the same time, whether it is the mouth lesions doing it I do not know.  I had an US neck last December, before PHPT was mentioned and it showed a L reactive cervical lymph node of 18mm plus smaller ones up under my jaw.  I have a stricture in my L submandibular duct made worse by the biopsy they took from the floor of my mouth.  I had MRI in January of neck and it showed reactive lymph node.  I went to see Mr P in May as I do wonder if this could actually be the adenoma, he did feel it and felt it should have FNA biopsy.  Oral locum was arranging this but Radiology cancelled the request as had already had a US. I asked to go back to ENT, saw them in July and they felt it was still a reactive lymph node still and nothing needed doing although they did say my carotids were prominent. I saw orals again and they were going to excise it under GA in Aug but I still had concerns about the swelling above it which they did not seem to want to address and I got an email saying they would cancel the op and review.  I had started vitamin D in July due to low levels found in June and I started having some real problems with reflux which was causing ear ache and blocked eustachian tubes and I was put on Ranitidine in September, it seemed to have a small effect on my neck swelling so I wonder if they are related?  I also think my saliva is thicker and may contain higher calcium concentrates and that it may be silting up, which then gets slightly infected and blocks a little which causes the lymph node to swell.  I have to massage the gland regularly and keep myself well hydrated.  My GP feels that if it was going to do anything, it would have showed by now.  I still am worried but am having the gastroscopy soon.  Sometimes it feels like cramp and will ache.  I do get a very sore scalp at times, feels really bruised but I think that is meno related, sometimes I get a 3 day headache mainly in mastoid area but again I think it is meno related.  I do get hot at night but not night sweats, which is silly as I freeze all day.  I've had dental check ups and they don't think it is my teeth so I have no idea what is causing this node to be up unless it is auto immune.  I would dearly love for it to go, maybe if I can get past the FHH stage and onto some localisation tests it may well light up, who knows??  I worry about getting it biopsied in case it is the adenoma, it just seems odd that it has stayed exactly the same now for over a year, some answers would be a relief.  I really wish you more luck than I have had in finding out what it is.  Ohh got tested for Sjogrens and glandular fever and both negative as well.  
Take care, Sue x

Hi Tigerlily and Sue

I feel a bit helpless as I don't have any experience to relate to this and so I'm not able to offer up anything constructive by way of opinion or advice, but I am so sorry that you're having to put up with all this on top of the usual pHPT cr*p. I just hope you find some answers soon. Sending love and cyberhugs, and I guess some cats too....we haven't had many cats lately, so take these .....

Jasmine x

Thank you Jasmine for the cats, they are very much appreciated.  Miss Lucy has rediscovered her radiator bed, all curled up and warm, she must almost cook in there!  I think the not knowing what it is just adds to the stress levels and makes me feel tense much of the time and I have to actually make myself relax.  How are you doing???  Your big day next week and I will be thinking good vibes and hope they find where yours is lurking.
Thanks again for the cats,
Sue

Thanks Sue. So much hinges on this venous sampling and parathyroid angiography; the 4D CT did light up another adenoma in my neck but according to the CT report it appears to be attached to the carotid artery (gulp!) and FP has said, in his words, only a high degree of confident localisation will enable surgery. Thanks for your good wishes Sue - Tigerlily, sorry to hijack your thread .......

Jasmine x

Also feeling helpless, Tigerlily and Sue that you have to go through more than the "normal" rubbish. If anything is normal in pHPT, that is. I actually think that any other issue you have at the same time as pHPT can be intensified and cause even more hassle. There is such an imbalance in the entire body. Sending you both lots of mega hugs. 

Jasmine, I understand your worries, but I think you must retain your faith in FP and trust that he won't let you down. He has got you further than you thought was possible and has given you hope when no one else could entertain the idea! And you deserve the best possible care after all you've been through and all the disappointments. He would have to be extremely cautious bearing in mind your history, never mind the awkward position of the adenoma. Also sending huge hugs and many positive vibes your way. 

Love and hugs 

Brigitte xxxx

Thanks, Ladies, for commiserations and suggestions.

Thanks to you, Sue, for outlining your case so clearly. There are some similarities with our lymph glands. I always find it so useful when someone on the forum describes their situation at length. I always pick up something useful from the details. Sorry it's a bit grim for you at the moment, Sue. Hope things improve soon.

I'm resting up over the weekend, and then will be back on the old horse on Monday. Hope Audrey will be saddling up again soon, as well!

Cats to All and Love and Hugs from Tigerlily xxxx

Well, I don't think I can add much to this either, other than to say that I have had trouble with swollen neck glands all my life. I never really knew why I had so much trouble with this. I just sort of put up with it when it happens. It is VERY painful and can last for a couple of weeks at a time. I never really asked my doctors why this happens so often for me. I'd say I might have issues with this 3 or 4 times a year.

Tigerlily and Sue, I'm so sorry you're both suffering so badly with this crap! Geez, how much do we have to endure?! I do hope you can both find some answers and some relief!

Audrey

Thanks Audrey - I seem to be wallowing in the mud a bit at the moment - I'll be back on the old horse again soon. Thanks for your care and encouragement.

LOve from Tigerlily xxxx

Tigerlily
Sorry I haven't got any words of wisdom it I'm thinking of you and sending lots of hugs.
Love Amanda xxxx

Thanks for caring, Amanda.

I'm seeing the new endo this week, so have hyped myself up to ask for an US of these swollen glands.

Thinking of you, too, and sending Love and Hugs and   - Tigerlily xxxx