Silent reflux plus my neck

Hey me again,
You will all wish I stayed under my rock soon, but it was getting a little cold and damp in there and I needed a new box of tissues and some sun.  I'll try and be concise but apologise in advance if I get muddled.
8 years ago I was diagnosed with a rare auto immune condition, relapsing polychondritis (attack my own cartilage) that thankfully has been mild so far and mostly in remission since the first flare.  I was diagnosed by ENT and referred to Rheumatology for ongoing care which has been poor.  ENT also revealed I had LPR , stomach acid burning my vocal chords and causing voice loss and was treated with a course of PPI and gaviscon. I think health anxiety was also involved as had been 6 months of worrying what was causing my outer ears to swell up plus inner ear eustachian tube dsyfunction.  I took the meds and got my voice back, raised the bed head and have been fine.....or maybe not. Under the rheumies I had annual appts and blood tests which were always "fine" except  now I know my calciums have been raised ever since I first saw them back in 2006.  I was also going through a difficult menopause, anaemia and gynae problems which they kept saying could be due to being hypothyroid.  I also started having hip problems and had it replaced last May. Post op recovery went well, got myself running around in no time and apart from a dry mouth felt pretty good, I could walk again!  Went to dentist last Oct for routine check up and he noticed my cheeks were looking inflamed and within a fortnight I had all these lesions appear and a white patch on floor right next to salivary exit which he said was oral lichen planus.  I had the skin version for 2 years on my wrists but was told it was psoriasis and it suddenly just went.
I also noticed the swelling on the left side of my neck and was told it would be gone in 2 weeks and it was a lymph node.  Had my annual rheumie appt last Nov, yet another new consultant who told me RP is very rare and maybe I did not have it  or was in remission but would send me for an US of neck, that came back showing reactive lymph node.  Also sent to orals to biopsy mouth lesions and ENT as my inner ears were feeling blocked.
Had MRI begin of January, had to wait 4 weeks for results and showed non specific mass in neck most likely reactive and a very small nodule. During the wait the thirst was awful and I felt terrible, went to GP and that is when PHPT was mentioned due to a raised calcium and PTH.
They took biopsy of white patch near exit of salivary gland at front of mouth under tongue and that I think scarred the duct and blocked it, bit like standing on a hose pipe, a bump came up and then burst as saliva could not get out.  By the time of my next oral appt it had healed over but still had neck lump, every time I asked was it my salivary gland I got told it was a reactive lymph node.  April they dredged the salivary duct for stones but none found, still have neck lump.
May, he decides to do FNA on neck lump with US
No appointment comes so by end of May I ring and find out that radiology have sent form back as I had a US last December!!
New appointment given and then he says he will explore neck lump under a GA plus overnight stay as will have to have a drain in.
Letter arrives to go for preop appt end of July and  surgery Aug 4th
I went for pre op and nurse says I am down for excision of cervical lymph node, no mention of exploring neck lump, plus my husband has just had a stinker of a cold and I feel I am getting it.
I tried to contact oral surgeon to check he is in fact going to look at the swelling, his secretary says to email my concerns which I did and then I get an email reply saying in view of my concerns that it may be the salivary gland and not the lymph node that he is cancelling the operation and will book another MRI which I had done last Thursday.  I will get the results a week on Friday.

I had gone back to my GP at the end of June after the fiasco of the cancelled FNA biopsy under US saying I felt the orals were just dragging their feet and please could he send me back to ENT , the team I had seen years ago and specifically Mr O who seems really switched on and diagnosed my RP.  I was sent an appt for mid Aug but then a week later I got another letter saying the hospital felt I would be better served seeing the other ENT team who dealt with parathyroids and changed it.  I saw the consultant who to my mind was rushing, did not feel neck swelling, told me that my calcium levels were only a little bit raised and seeing as my PTH was now back in the normal range he would not operate on me as the tumour would be too small to find.  He did the scope up the nose thing, not very gentle, said my neck glands were not that enlarged but my left carotid was very prominent! That is where the large swelling is, under the carotid) and my throat looked fine.  He never mentioned the red patches all over left side of throat or the lesions in mouth.  I told him my ears were constantly blocked but he said he would let the endo carry on with my care.  It was because he felt the lymph node was not that large that I queried the orals digging it out, especially if I have to have the salivary gland removed and a possible adenoma removed, it just felt that one day you would be able to play noughts and crosses on my neck, is that tic tac toe in US? So yes I was scared of the surgery as my throat felt sore and I felt bunged up and if I was going to flare then a tube down my trachea made of cartilage is not a good idea, plus pre op nurse said I would only see anaesthetist just before op and he would decided if he would do it.

If you are still with me, here is the thing, it suddenly occurred to me what if this was all reflux related????
I do not get any symptoms of heartburn and rarely indigestion but it did start up a little in January if I ate too late.  My ears were getting really painful earache, I could not pop them and the pressure was really uncomfortable, ENT had said my ears looked fine.  I also had soreness right at the base of my tongue on both sides at the back below my tonsils and really freaked when I could  feel a raised ridge thing and flap that hurt which I now think is my epiglottis! The left side is higher than the right.  I have been having TMJ clicks on the left hand side too.  So I started back on the steroid nasal spray, started steaming my sinuses, and started taking Gaviscon advance at night.  Its been two weeks now and today is the first day I can pop my ears properly and the lump on my neck feels like it may have gone down a small amount.  The redness in my throat is not quite so vivid and I wonder if all the bad mastoid headache pain and epiglottis pain is an RP flare due to irritation from acid.  Eagle syndrome keeps popping up as there is definitely something hard and bony below my left tonsil which is like an elbow sticking up and seems separate from the epiglottis edge, eagles is calcification of the stylohyoid bone.  I am still getting cramp like pain in the salivary gland under my jaw and the swelling in my neck keeps cramping at times too and feels like it pulls deep into my ear.
Soo, thats why I have been hiding away, trying to be brave for surgery and then having it cancelled, which may be for the best but then its has been ten months and if it is something worth worrying about then I have delayed treatment, but the other side is maybe having another MRI may now show what the heck it is, Mr Palazzo did mention a carotid body tumour but that it was large and firm, no-one here sees the big lump, they just feel the small gland at the bottom.  I do not want PPI if I can help it, but gaviscon does have calcium in it and is contra indicated with high calciums , may help my 24 hr wee!
Thanks for reading this far, I know you all have your own demons to fight,  I just think all of this is dependant on each other.  It didn't help either when the ENT stated that my raised calciums maybe due to "something else"

I have done nothing all day today so I better go and see what we can have for dinner, thankfully have a chicken done so will use that.
Hugs to everyone 
Sue x

Hi Sue I'm in middle of doing dinner so I have just skimmed through your message. You really are having a rough time, I'm not sure if I can help technically but will have another look later and see what I can comment on.
It's no wonder you have been so quiet with so much on your plate.
Love Amanda xxxx

Aargh, just written a message which disappeared! I'm no use at all add this makes little sense to me but it seems that you are having to do the thinking for yourself, your GP and your consultant - no wonder you are exhausted!

Sue I've read your message again and although I can't help much on most of the problems, I think you could be right about the throat redness and sore tongue being due to reflux, I don't get much heartburn with mine but I get a deep burning pain in my stomach and chest when it flares.
I think an MRI may well show what the lump is and you can finally get that sorted, you really have been through the mill and I don't understand why the doctors can't converse with each other and get you some answers.
Sorry I haven't been much use but I am sending you lots of hugs         
Love Amanda xxxx

My goodness, Sue, you are dealing with a truck-load of crap too! So sad that life can be so miserable and frustrating.

I also might not be of much help with your issues, but I do know a thing or 2 about the acid reflux. For several years my voice was always noticeably hoarse. At fist I myself didn't notice it, but people were commenting on it. Then it got so bad, I was quite aware of it. My PA had told me for years that she suspected acid reflux. I told her that couldn't possibly be, because I had no burning. At that time, I had never hard of silent acid reflux. I thought she was nuts! I finally agreed to have a scope done to check out my esophagus. I was told it looked just fine. A few more years went by. My voice got worse and worse. I finally agreed to another scope. This time they also looked at my stomach. That was when the discovered a small, patch of irritation in my stomach. That was when I started using antacids, and when they no longer worked, PPIs. My throat has been sore and scratchy pretty often. That is probably from the acid reflux too. As posted on the forum recently, my ears have been KILLING me for 2 weeks now. Well, actually the first time I had trouble with them was about a month and a half ago. I have NEVER had this issue before in my life, but since my son is also having this same problem right now, as are many people my husband knows from work, I'm thinking this is not being caused from the acid reflux. It would make perfect sense, though, that acid reflux could very well affect the Eustachian tubes and the ears.

I stopped the PPIs recently and am trying to use Gaviscon and TUMS instead. Some days seem ok; some are not. I'm really hoping once I get the rest of my health issues resolved, the acid reflux might settle down or disappear altogether. I know acid reflux is a symptom of HPT. I was hoping after surgery it would resolve. It didn't. I also know adrenal issues can cause digestive problems. I'm praying this is why I'm having so darned much trouble now.

I am truly sorry you are having so many other issues at the moment, but I can assure you, it can and WILL get better! Hang in there!

Audrey

Oh, Sue - you really seem to be getting the total runaround with all of this - I am so sorry you've felt so low with it and not at all surprised you wanted to hide out for a while.

A few things have jumped out at me from what you have said, but all in all I think I would push for a full MRI of head/neck/throat area to get this nailed. I'm not sure who would order this, however - you would know better than I maybe.

Strange bumpy things on the back of the tongue can sometimes be connected with the thyroid - I think they call it "lingual thyroid". And swelling of the carotid body has featured in some of the research I've read about neck lumps. I have an odd area on the right side of my neck that feels tight and full when I sit in some positions, and a benign reactive lymph node was noted in that same area on the first neck US that I had (the odd area being on the other side of the neck to the HPT adenoma). My face also swelled just above the same area, but that has subsided now, thank goodness.

I was talking with a pharmacist yesterday (friend of my cousin whom I met up with) and he was telling me that neck lumps/swellings sometimes turn out to be benign lipomas. He had one removed from the side of his neck.

So there are a few things that might be implicated. I think you're right when you say that everything is connected and HPT does seem to bring some weird symptoms with it. Calcification is also a possibility with high (and even not so high) calcium levels.

You mention Mr Palazzo - do remind me as I have difficulty keeping up with everyone's story - have you seen him yourself, Sue?

Nancy here on the forum is the person to ask about neck lumps as well.

I hope that having written everything out here on the forum it has helped to get your thoughts in order so as to be able to make a plan for what to do next. And everything you have written will be valuable to someone else, I'm sure, because that is the way things work on here. I'm always grateful to everyone who goes into detail about their own case, so I can see how it compares to mine.

Sounds like you've decided an MRI is in order now, Sue, to get to the bottom of these continuing problems. Keep us posted on progress from here, and I hope you're able to get a scan organised very soon.

Love from Tigerlily xxxx

I'm so sorry you've been having such a rough time with all this going on and I must admit I have no idea how to help. It would seem that an MRI would be beneficial to all concerned though. It sounds (typically) as if different Drs can't agree, confer or liaise to help their patient. I know that so well myself and sympathise. 

One thing I can do is send massive cyber hugs to cheer you up and give support - I'm good at hugs   

Love 
Brigitte xxx

Yes, the message I wrote that vanished said we needed Brigitte on the case cos her cyber hugs are awesome:-)

Hi Brigitte and Meggy and Tigerlily,
Thanks so much for the cyber hugs, they are very much appreciated.  I think I have been so stressed out with all of this that it has been a vicious circle of anxiety and worry and long waits.  I have an appt with orals next Friday so will see if this MRI shows anything.  I do think the gaviscon is helping and below my tonsils feels less sore and my ears feel less pressured today although it is still hard to pop them.  I really hope this is reflux as that can easily be treated!  
My endo requested a blood calcium 4 weeks after starting Vit D to check it isn't sending it too high and to contact his secretary for the result.  I rang her last Tues and she said she would get him to look and advise and he will ring me.  I guess I will ring again next week as not heard back yet.  
Tigerlily, I went privately to see Mr. P at the end of May as I was worried silly about this neck swelling and they were talking about doing a FNA under US on it,  I was worried in case it could be the adenoma and a needle stuck in would not be good.  For some reason he thought my urine calcium was very low and talked about FHH  but also Vitamin D levels which I had not had done.  He is the only doctor that actually has felt this lump properly saying it was large and firm and to get it biopsied.  So it was "I will write to your endo and get him to rule out FHH and then you can be referred back.  My endo has not requested sestamibi etc as he feels MR P will want to do that himself and it would be silly doing it twice.
So at the moment am taking Vitamin D, and then will redo the 24 hr urine and hope that they can rule out FHH.
Hugs again,
Sue x

Oh Sue, this is really dragging on for you, I'm so sorry you're feeling so down about it all but it's understandable, and I know how it feels believe me, so I'm sending you one of Tigerlily's GBHs as well. Have you had the blood test for FHH yet? Hope so as it can take up to three months to get the results. I had mine done in June and I'm still waiting. I'm not surprised FP has been the only medic thus far to have thoroughly felt your lump, he's very thorough isn't he, almost to the point where you want to give him a shake and say "move on"! He is the only one to have ever examined my neck too and I've seen umpteen doctors over the years since I first developed Graves' disease.  Believe it or not the endo didn't even feel my neck then for a thyroid goitre! It didn't register with me at the time but of course over the years, and particularly since developing pHPT, I've done so much research on both that I have a much better awareness of what they should and shouldn't be checking for - including physical examinations.

I hope you get some answers soon Sue, sorry I can't be more helpful either but, like everyone else, I'm standing in the wings cheering you on!

Jasmine x

Don't the silly moos realise that if they keep you informed you will feel much better psychologically? The problem is that their traditional role was always to be aloof and the nurses would do the contact touchy feely side, times have changed and so many doctors haven't.

Just realised I've probably picked up on the least important bit but it really bugs me when they can't ring you back.

Keep updating us and remember we're all rooting for you xx

Hi Jasmine and good morning,
Thanks for the lovely hug, I have got a lovely collection from everyone and they are all treasured.  Genetic testing has not been mentioned yet, my Vitamin D was low in June and so I started taking a low dose Vitamin D at the end of July.  The idea being take it for 3 1/2 months and repeat the 24 hour urine to see if my urine calcium rises.  However the local apppointment system is a law unto itself and this time has sent me one for 2 months time instead of middle of November.  This means to get the tests done I will have only been taking D for 6 weeks, I hope with the good summer we have had that my D has risen enough to increase my urine calcium and thus disprove the FHH. If it is still low then I will argue to redo it when he originally requested it.  I did try and change the appt for later but they had no idea when my new appt would be as I was cancelling this mid Sept one, so I gave up and left it as it is.
My mouth is flaring up again, am trying to stay off the steroid mouthwash for as long as possible, it doesn't cure it but it sure does dampen it down for a few weeks.  It sounds far worse I guess and there are people who have much more serious illnesses, I just have to be careful what and how I eat.  I am definitely not losing any weight despite it.  Hope you have a lovely day, sun is out this morning so may try and get dh out blackberrying along the River Witham!
Hugs Suex

Oh Sue, I can see why you're so stressed out when not a lot seems to be going forward. There always appears to be so much waiting involved for everyone. It does seem to be such a pain when you can't even get blood results from 4 weeks ago, but then I never got mine from the Endo in May. My GP does keep an eye on me as far as bloods go though. My urine calcium was low along with Vit D, but FHH was never an option: my Endo thought it was not an option to be considered thankfully. For something so rare, it certainly seems to come up in a lot of Endo's minds these days.

I have been surprised to find out that Endos and other associated medics don't feel the neck: it was one of the first things my Endo did at my first appointment. Do you have another appointment with FP or are you waiting for your local Endo to get his backside in gear and rule things out? You would think they would at the very least ultrasound your neck. 

I hope you get some answers from the oral people. You should stress about how stressed you are and how lost you are in the process of finding anything out. Sometimes a melt down can jolt medics into viewing you the person, where they previously saw you only as a medical condition. 

Sending you loads of superdooper cyber hugs. You are not alone in this because you have us on the forum and we're good with hugs and support

Love and more hugs 
Brigitte xxxx

Well if you see 2 people walk past with a dotty black cocker it might be us (Pat's still in bed so no plans for today yet!)

Hi Brigitte,
I had an ultrasound done of my neck last December when the lump first appeared which looked like a reactive lymph node 18mm and either due to infection or inflammation.  This was just before I had a meltdown at my GP's waiting for the results and he redid my bloods which showed a raised calcium and PTH back in January. It has remained there ever since and is an egg shaped swelling above it and my carotid is right on top of it.  They biopsied a white patch on the floor of my mouth which to my mind scarred the salivary duct from my submandibular and semi blocked it.  I also had the duct dredged at the beginning of April but just past where they took a biopsy. I kept asking about the lump and every time he would say "Back in January it was a non specific mass on MRI". Finally in June he was going to do a FNA on it under ultrasound but radiology sent the form back saying I had already had an US done back in December.  I had to ring up after 3 weeks to find this out as he never bothered to inform me and I was wondering where the appt had got to.  
My GP feels there was something not right like he did not order a FNA with it and that is why radiology refused to do it.  So then had to wait whilst they sent me another oral appointment to again decide what to do.  That was when he was going to excise the lymph node under GA but then cancelled it when I emailed my concerns about the swelling and booked another MRI Parotid which I had done over a week ago.  I get the results next Friday.  I cannot believe it takes this long to work out what the heck it is.  I know I have auto immune rubbish going on but thankfully so far it has been mild, which is a good thing as the rheumies have not been helpful at all. They knew my calciums have been raised since 2006 and I guess because it was a different consultant  each time  they never bothered to look at last years bloods or tell me.
I have a letter from rheumie from last November stating all my bloods were fine!  When I put him on the spot in May this year his answer was he thought it was a cuffed specimen.  He does not need to see me again he says, "as my RP is in drug free remission" but will be happy to  see me again in the future if necessary.  Wild horses will not drag me to see him ever again and that is when I decided from now on, I want all my bloods copied to me.  It explains partly why I feel like I have a ball and chain round one ankle all the time, ( I still  think my thyroid is undertreated too) Yikes am in rant mode!  Some days feel better than others and I do wonder if I am totally losing the plot, knitting with one needle etc but I would love to lose the lump!
I have just seen a little mouse under the bird feeders getting sunflower seeds, he better scarper as Miss Lucy is out doing her rounds.
Meggy I will keep an eye open!
Hugs Sue x

Rant away, Sue, it does you good to vent. Sorry my attention span is kaput because you probably mentioned most of that in the initial post   It does seem that nobody is getting to the bottom of things and that must be so frustrating. I really hope that the oral people have an explanation for you. 

Perhaps your GP could keep an eye on your calcium and PTH levels in the meantime and at least you'd know what was happening there.

I really wish the whole situation would improve for you, but perhaps it will when you find out the MRI results this next week. Hold onto that sliver of hope. 

I'll try waving my magic wand... How I wish! 
Meanwhile, lots of hugs and love 
Brigitte xxxx

Just a thought, Sue, but if any type of possible continued calcification is involved (Eagle syndrome), it might be worth mentioning that specifically, in order to get someone to move things forward as regards regular monitoring of your calcium/PTH/Vit D levels.

When it was found that my Vit D level was only 16 (UK units) I agreed with my GP that I would take 4,000 iu Vit D a day with regular monitoring (every 2-3 weeks or so) of my blood Ca/PTH/Vit D to make sure the Vit D did not increase my calcium level. This gave me a good run of blood test results to show FP when I saw him (and a lot of others in between who were unable to see the pattern of "high-in-the-range" serum calcium together with inappropriately raised PTH from the same blood draw indicating primary HPT).

In your position, I would not be wanting anything to be given the opportunity to calcify further.

I hope I've read your posts correctly - and that the scan this week will bring some results.

Love from Tigerlily xxxx

Another thought, Sue (sorry!), but why not liaise with Meggy - she also seems to be in Lincolnshire and may have access to clued-up specialists that you could consult as well?

Apologies if I've got this wrong in any way.

Love from Tigerlily xxxx

Hi Tigerlily,
Please do not apologise, all suggestions are very welcome. It is such a minefield that we have to struggle through.  I am at the same hospital as Meggy but we have different endo's.  I was referred back to ENT and did in fact see the surgeon back in July.  He commented that my PTH was now mid normal and that it was fine to walk around with raised calciums and he would let endo carry on with my care.  He also said that he would not operate on me as my possible tumour would be too small to find at the moment.  I  had actually requested this consultation with my old ENT team that I had seen before but the hospital felt I would be better served seeing the surgical ENT seeing as I had PHPT problems and changed my appointment.  I actually wanted a second opinion on my neck lump but he just said my left carotid was very prominent, he did have a good look in my mouth but that was about it, back to orals.  I have to wait for the MRI result on Friday and then can plan what to do next.  To me it just feels like a swollen band of muscle that goes from under my ear and jaw diagonally down my neck for about 5 cms with a ? node at the bottom. I can feel the carotid going over the swollen firm area and feels worse if I lift my chin up.  When they examine you they make you look straight ahead and it does not feel so obvious but it can cramp and be sore at times.  I do wonder if it is related to the submandibular gland which is not working right either.
I hope to get an answer soon or I will really be going round the twist.
Hugs and thanks,
Sue x

Thanks, Sue - I do hope the MRI shows something for you.

Love from Tigerlily xxxx

Hang on in their Sue.
Love Amanda xxxx

Hi everyone,
I had my oral appt this morning for the results of my MRI.  It has only shown reactive lymph nodes again under my jaw and in my neck, the largest on the left still, plus a nasal polyp which I am not sure if he said was in left sinus or back of nose on left.  He does not know what is causing the prolonged reaction or what the swelling is above the lymph node, unless it is part of the submandibular gland under the muscle semi blocking all the time.  He feels the scar tissue at the exit of the duct may be responsible where the OLP is.  As it does not look sinister he feels operating is more of a risk than leaving it alone, there is no stone visible in the gland but it may also be disease in the gland itself in the form of Sjogrens.  So I have to have blood tests and inside my lower lip biopsy taken, will go back mid October.  The parotid on the left is a little inflamed as well but may be due to the mouth lesions.  It does not help that HPTH causes such a dry mouth and thirst as well, which is driving me mad at the minute.  I have to keep massaging all the glands and drink plenty and stop worrying!  I feel relieved in one way that I don't have to have surgery but I really would like to know what on earth is causing it to stay swelled for over 10 months now.
Thanks for all your support, I think I would totally lose the plot without you all.
Hugs Sue

Hi Sue
Glad you got results of MRI, I can't say I understand all the points mentioned Sjogrens is a mystery to me. It's strange that you are still having reactive lymph nodes, could this be due to PTH adenoma ? I hope the blood tests show something that can be sorted so you don't have all these problems to cope with as well as the PTH ones.
Sorry I haven't been of much help, brain fog awful.
Love Amanda xxxx

Hi Sue

I'm glad you've got the MRI results, though you don't seem to have moved along much further and seem to have confused the medics somewhat. You are still on their radar if you have another appointment in October, so that's good. I'm sorry you're still in the dark though as it must be so frustrating to live with. 

I wish I could help you, but there is a question mark and an exclamation mark lodged in my head in pace of the brain which isn't functioning properly  I can, however, send you loads of cyber hugs and join you in the thirst thing (which is also driving me insane).

Love and hugs
Brigitte xxx

Sorry to hear you're having such ha rough time, Sue. I am happy they are keeping an eye on you and your condition, but very sorry you are suffering so badly. Hang in there! As I always say, better days are ahead!

Audrey