What a to-do! Advice please

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Hi everyone,
I am just a little bit annoyed, taking deep breaths and trying not to stress myself out!  I saw orals 3 weeks ago and it was agreed that I would have a FNA of this lump/swelling on my neck.  The salivary duct dredging has not been successful and no stone was found.  I do not think they really know what it is except I had an US of neck last December after the lump first appeared at the end of October. It showed an 18mm reactive lymph node which is still present.  MRI in Jan said non specific.  Mr P felt it last month and said it was not an adenoma but to get it FNA as large and firm.  So at my oral appointment he said he would do a FNA on it.  I have waited 3 weeks and heard nothing so I rang his secretary this afternoon who has just rung back saying the request was sent but US have sent it back because I had one done last Dec and it showed a reactive lymph node.  She has spoken to orals as in clinic this afternoon and he has told her that I need an appointment to decide what to.  The problem is he is a locum, is leaving soon and no appointments available.  So the appointment at the end of May was a complete waste of time, I still have my lump after 8 months and feel no further forward and back to waiting for an oral apppointment.  I am trying not to worry about it but surely if it was a reactive lymph node it would have gone by now?? 
So I think tomorrow I will try and see my GP, ask him to send me anywhere except Lincs.  This lump is starting to be tender at times and I think the actual salivary gland under my jaw just keeps blocking.  I am amazed that no-one thought to let me know this was not going to happen.
Sorry rant over, just had to let off steam, OH saying you should have said this or that and ring them back or well if the consultant requested it, he should overule US but it seems he hasn't.  
Fed up with it all,
Sue

Oh Sue, I am sorry. Why is it that the medical profession are a bunch of idiots who decide things about you without letting you know and make you run after them trying to find out what's going on? I don't think I can be much help but probably a trip to the GP could only help matters progress, surely? The only worry in getting yourself referred to a different hospital might be that they would want to start from scratch with their own investigations and you'll still be hanging on waiting for something to happen etc. At least your GP can offer advice to you and may be some help in pursuing things with the hospital.

I'm sorry I can't really be any help and hopefully someone else can come on here and offer you better advice, but I really do feel for you and am sending you lots of hugs and doing the deep breaths with you!

Love
Brigitte x

I am not familiar with any of that either, Sue, but I do feel badly that you are having such a rough time!    Sending a little sunshine your way to cheer you up.   

Audrey

Hi Sue, sorry I missed your post, don't know how that happened.  Grrrrr ....HPT brain ....! I hate it when that happens as I feel as though I've been unsupportive, or you might feel I couldn't be bothered to reply - HPT paranoia is such fun.......!

It all seems very shabby to me and I think if I were in your shoes I would be speaking to the PALS people as this kind of non action and appalling lack of communication is just not acceptable.  PALS aren't just toothless tigers as they once appeared to be, they really do get things done in my experience, I've had a few encounters with them when services for my elderly parents have fallen through the cracks, probably due to ageist mentalities, but PALS got right on it and put things right.  Just a thought .....

Sending love and cyberhugs!

Jasmine x

Aww Jasmine,
Please don't apologise, I read posts and swear they were not there earlier and yet they must have been as they are dated the day before or something.  I've decided to wait until Monday and try and get an appointment with my GP as my hospital bloods should be back by then.  I shall discuss all that has happened recently and ask would I be better going back to the ENT dept as they dipped out when orals were supposedly looking after my Oral Lichen Planus but switched to treating the salivary duct problem.  If I don't receive an oral appt in the next two weeks as promised then I will consider going to PALS, so thank you for suggesting them, it is appreciated.  I feel my mind is going round in ever decreasing circles sometimes and I hate it.  The sad thing is my mother is over in Notts area and it is so long winded getting her proper treatment as well, ( plus she will not go see her GP unless I drag her ) I did get a stair lift put in for her in January as she desperately needs a hip replacement but refuses to have it done which has made a big difference.
How are you today???  I did sleep a bit better last night and my headache has finally gone so need to do catch up round the house today, what joy!
Hugs Sue

Uuuughhh! Don't get me started on stubborn elderlies...!  My mum has needed knee replacements for years, and has really struggled with stairs but refuses to have a stairlift because she "won't give in to it...." *#%$¥€>< !!!!!!  It took me years to even get her into a wheelchair so we could take her out socially because she was too proud to let people see her in a wheelchair.  She's had one knee done now but still needs the wheelchair because she refuses to have the other knee done. My dad, bless his heart, is having a hip replacement on 4th July after struggling in agony for two years, during which time he refused to have it checked out, saying "I'll manage..." when he clearly couldn't! Different generation though, the stiff upper lip war generation who don't want to make a fuss......!  My poor mum is more worried about me than herself, even though she's now battling lung cancer, and she keeps saying how ill and tired I look and that a mother shouldn't have to bury her daughter, it should be the other way round - thanks mum, don't think I'm quite in God's waiting room yet, although some days it feels like it!

Jasmine x

Hi Sue.

only just seen you post as i have been away. I would make the appointment and have a chat with your GP, as they will be able to coordinate your care and will be able to contact hospital department concerned, especially if getting the run around. 
I think this is probably your best course of action.

All parents are stuborn when it comes to there own care, mum is just the same.........

best wishes

Lozza

Went to GP this evening to get results from last weeks blood tests.
So PTH is now mid range, calcium still up and first time had Vit D tested but on the low side despite being out in the sun .
PTH 3.4 pmol/L range 1.3-6.8
Calcium 2.69 mmol/L, adjusted 2.69 range 2.2 - 2.6
25 Hydroxy Vit D 42 nmol/L. Level should be >75

Had a chat about my neck lump and lack of progress, so he is going to refer me back to the ENT's again but did warn it could be a long wait.  If an appointment comes from orals then to attend anyway.  So I think the next step is going to be taking Vitamin D to see if my urine calcium increases, which will rule out the FHH theory.  I see endo in 3 weeks so will see what he suggests.
Take care, Sue

Do you ever have your phosphates measured Sue as they're normally low with pHPT? Even though your PTH is mid normal, with an elevated calcium you would expect it to be much lower if everything was working normally.

Hope all goes well with the endo - yes, it would be great to get your urine calcium up to eliminate all the FHH nonsense! Hope you don't have to wait too long for the ENT chappie, this has gone on far too long for you!

Jasmine x

Yes, Jasmine is right - phosphates are usually low in pHPT.

My blood phosphates are usually low in the range. The last 24 hr urine calcium showed calcium/24 hrs was around 4, so middling, but urine phosphates were just below the bottom of the range.

Didn't realise that urine phosphates could be low as well.

Your blood calcium does seem a little high, Sue, but no doubt you have your eye on it.

Love from Tigerlily xx

Hi to everyone again,
I just thought I would update on the oral appt I had on Tuesday.  Because radiology returned the form for the FNA of my neck lump saying it was reactive lymph node he has decided to do a biopsy under a GA to actually see what it is as it seems I have others up as well under my chin.  This is dependent on my pre-op assessment where I am told I will see an anaesthetist (this did not happen last time) I must admit I am dreading this as he said it will involve an overnight stay and a neck drain, and it will be at Lincoln.  I do worry about tubes down my trachea which is cartilage as the polychondritis can be triggered there.  I wish they could do it under local but he said no.  I did ask if he saw anything adenoma like to whip that out as well to save me another op!  I did find out from MRI done in January that there is  something upper left near thyroid which was unremarkable, this is the first time a nodule or something has been mentioned.  I have my next endo appt in 2 weeks so will try and pin him down as to exactly what it says.  
I had a dental appt a week ago to have the amalgam removed from upper back molar and refilled with a white filling in case it is aggravating the oral lichen planus.  It has been really niggly since and today had to go back again and have it x rayed and one spot redone, thankfully it feels much better tonight!  I wish they would just take it out but seems they try and preserve as long as possible now.  He doesn't think it is causing my neck lump either.  I too have had my headache back the last 2 days,this time with the tight spinning sensation, thankfully it has eased finally.
I hope you are all having a better few days.
Sue x

Hi Sue 
Sorry you are having to have an overnight stay to have your biopsy, I don't know anything about polychondritis so I can't be of much help.
It makes me so annoyed though that when something has been seen why wasn't it brought to your attention. Do the doctors think we only need to be told certain things about our health and the rest they keep to themselves !! 
I'd definitely pin the Endo down on what this is and why it wasn't mentioned before.
I'm glad your filling is sorted and your headache seems to have disappeared.
Keep pushing to find out what is going on with the neck lump and I hope you get the biopsy done as soon as possible.
Love Amanda xxxx