I was wondering if anyone else has problems with swallowing food. I can drink okay but if i eat solid food like steak etc. My Rheumy is sending me to see a ear nose throat specialist to rule out any other cause's which could be many.. He said it isn't common but does happen to people with AS..I should mention instead of going forward my head is tilting back like i'm looking at the stars..anyways looking to see if others have this problem..i have had pain in the past if my thoriac or chest is badly inflamed....Thankyou in advance for your feedback.

Hi bosunmate,
I have been complaining about this to my doctors for a few years. I am stuck looking down at my feet, but I can imagine stuck looking up is no way to live either. I think your doctor is right, there could be any number of things casing swallowing trouble. Do you choke on saliva in your sleep too? My throat diameter is only 50% of what it is supposed to be. Good luck at your ENT appointment.
Take care,
James

Hi Bosunmate - yes from over here. Have some kyphosis, C2 has a slippage behind C3. Have had difficulty in swallowing for about 4 years now. Have intermittent dysphragia, which is a nuisance. A barium ultrasound some 3.5 yrs ago, revealed nothing... Problem has got worse since first looked at. Often simply choke on food, gets completely stuck in my gullet. Horrible. Food gets down so far, and sticks in gullet. Sometimes happens with liquids. Always find swallowing saliva diff. ALWAYS like swallowing on a lump in my throat.

Hells teeth problems this evening. Feels like a golf ball in my gullet. Fed up with it.

Have given up on asking doctors though. They just look at me like I'm making it up. (Shrug of shoulders. They 'don't' know, and couldn't care less!)

Lucky you for having someone who actually recognises the problem...wow. Could you clone him for me please? <LOL>

James. No, don't choke on saliva in sleep, but do have difficulty in just swallowing saliva.

You know, what would be WONDERFUL is IF these doctors could ALL read from the *same* page of informatin *and exhibit excellent knowledge. Sigh.

OK. One days pigs might fly... !

Hi James thanks for replying looking up i think is a little easier than flexing forward. I don't choke on saliva at night as i really suffer with dry mouth i think from the meds (not really sure)and have to sip constantly through the night. I have regurgitated well sleeping which i take Nexium for..

I know Mollyc sometimes they look at you like your from another planet. I am lucky to have been with the same Rheumy since AS was found 30 years ago. He is only a few years older than me so that has helped..Like you I have food getting caught in my gullet. My rheumy told me years ago that there would be good and bad days, he just didn't say that most would be bad. I keep waiting for things to burn out as i have never had remission. But like everyone else on here my attitude is positive...thanks for answering.

Hey there bosunmate, I must say your username is rather comforting. I was once told by an old fisherman after I fell off a ladder, there are two things you never turn your back on on any ship: One is a ladder and the other is a bosun's mate...lol

I am really glad to hear from someone else who has never experienced a remission. I have always commented that there are no flares for me, it's just constant and unrelenting. I think very few of us have to live like this and it's good to hear from someone else who lives this way. It seems so rare that both me and my doctors have wondered about my diagnoses at times - fortunately, I'm a classic case and there has never been any doubt...except from me.

What you wrote about waiting for a remission to kick in struck me and I only just noticed that you are from the TO area. I was born and raised in Hamilton (Oskee-wee-wee, Oskee-waa-waa...).

I suspect you've been "waiting" a lot longer than I have since I've only been dx'd for about four years now. How do you keep going? Is this as good as it gets?

Chris

Dry mouth? OK. That could be our nice wee friend, Sjogren's Syndrome. Dry mouth, and dry eyes, and dry lungs, and dry...oh well... !

Sipping warm water is good. Keep hydrated. There is a mouth spray you can use, Artisial. Tastes foul and I think a sip of water is better!

IF dry eyes, artificial tears, preservative FREE, There is also Dacudoses, an eye wash and for night time LacriLube - an ointment. These are all pretty good for dry eyes.

I have posted quite a bit here in the past on gastric problems and our jolly little friend *regurgitation...such a nice bedfellow... Put in a search.

Take care -

Molly C (France)

Swallowing food is a problem for me at times. I can go a month no trouble. The next day stuck in the gullet as Molly says. Cant even swallow water sometimes. Had a hiatal hernia fixed in 1989 always thought that was the problem.
ETTE.
Darrel.

I've had trouble for a few years now. I seem to have a narrowed oesophagus, probably from scar tissue. I have to chew food up quite small and can't swallow most pills. Otherwise the food or the pill gets completely stuck - quite scary when it happens because it won't shift even if I gulp big glasses of water etc. In fact trying to drink will make a funny sound as the liquid tries to squish past the object that's stuck. As a result, I have to crush all my pills and I'm very restricted when it comes to using slow release meds.

I had an endoscopy which showed some slight inflammation and evidence of small tears in my oesophagus. I take rabeprazole daily to help limit the acid reflux at night.

Hi Chris i actually served in the Navy in the 60's, it was there i suffered trauma to the lower spine and the AS evolved from there. It progressed from there to include all the joints, and like many long time AS'ers i have restricted air way disease. I won't lie to you its been tough, something i wouldn't wish on anybody. The one good thing is that they know alot more about this illness now. There was very little known 30 years ago and no internet to research. I only have one kidney and copd so can't use the new drugs like Remicade and Embrel, but alot of people are being helped. And no this isn't as good as it gets, everyday you have hope that the next day will be better...And finally you ask how do i keep going. I look into the eyes of my wife of 38 years and she has been there every step of the way. We sometimes forget that our partners live with AS also. And last but not least is this web site that show's we are not alone. There's alot of good people here...

Your right it is very scary when you get food caught. I was eating licorice when a piece about and inch and half got stuck sideways. Can no longer eat steak unless i take very little bites. I try to stay away from any hard food. I take Nexium right now but have still have had regurgitation while sleeping once in awhile. Thanks for info Wendy.

if the swallowing problem is from the AS, then others will be able to help you more. my husband has gone through bouts of trouble swallowing from having scar tissue in his esophagus from having very bad reflux / GERD. the gastroenterologists have removed the scar tissue several times over the years. a combination of taking prilosec once a day, mylanta at night when needed, and not eating for a few hours preceding bedtime, and avoiding certain foods (which i think depends from person to person) have helped him immensely. the last time he was scoped, things looked very good down there. when it is bad, food gets stuck.

Just an update, have had colon and stomach scoped and the Specialist says problem is for sure AS related. See my Doc on Tuesday to see whats next, though i think it will be changing to a softer diet as i will not let them operate on my neck or spine..so we will see.

I had some swallowing problems. Learned to chew my food very carefully. Doc did a scope and my esophagus was scarred form years of Gerd. He stretched it out and it was like a new throat. I had to have had this done twice now with 7 years in between. Very similar to Sue's post


If I get too much heartburn I know it is slowly closing again.

Just a thought - in the UK Speech therapists are the ones who understand and can help you with strategies for dealing with swallowing problems. Not sure if it is the same in other countries? I've heard a number of people with quite different disorders get really excellent help and advise from speech therapists on this.

I attended speech therapists before leaving for Fr. Did help a 'little' with thhe dysphonia but not the dysphragia.

Food still gets stuck - perrenial problem, as mentioned before, even with liquids, then have to spt everything out! Horrible.

But, Bosunsmate: AS related. Yes. Last Sept, 2010 had a whole raft of MRIs done in the UK and there it was, DISH (Forestiere's Disease). And bony outcrops (syndesmophytes) sticking into the esophagus...DISH and AS 'can' be bedfellows though rare, it does happen. If you 'do' have DISH then will need an X-Ray or MRI to pick it up. Mention DISH to yr doctor: Diffuse idiopathic skeletal hyperostosis. To google up put in a relationship searcvh, AS & DISH or DISH as it relates to AS. Quite interesting. I printed off the info for my doctor here. My rheumy in the UK said that in y case it was related.

Such a relief to get the DX - no one else had spotted the relationship - or knew of it?

Tell you, there is soooo much info here on KA, needs collating, that's for sure! <VBG>

(OK typoes an all - can't see properly to pick em all up. Roll on ophtho appt.)

Good for yr specialist to spot it - the fellow I saw over here a year ago didn't!

DISH and Ankylosing Spondylitis Link - DISH Linked to A.... S.....

DISH (Diffuse Idiopathic Skeletal Hyperostosis) - Spine ...
Dec 28, 2010 ... Like ankylosing spondylitis, with DISH there may be a delay in diagnosis of ... 2001 Jul-Aug;9(4):258-67 PMID:11476536 (Link to Abstract) ...
www.orthobullets.com/spine/2045/dish-diffuse-idiopath...

Ankylosing
(DISH, Forestier's disease). Florid new bone formation at entheses results in spinal stiffness. May be confused with ankylosing spondylitis. ...
www.healthdictionary.info/Ankylosing.htm -

Seronegative Spondyloarthropathies: Joint Disorders: Merck ...
Ankylosing spondylitis (AS) is 3 times more frequent in men than in women ... Diffuse idiopathic skeletal hyperostosis (DISH) occurs primarily in men > 50 ...
www.merckmanuals.com/professional/sec04/ch034/ch034d....

There's not a lot to actually 'link' the two diseases, but they 'can' be linked. The (my) MRIs (Saggital STIR) are very clear on DX both conditions. Lubly-jubly...

Bit more info that may be of general interest re the swallowing problems:-

http://www.brighthub.com/health/arthritis/articles/102130.aspx

Diffuse idiopathic skeletal hyperostosis, or DISH, is considered a type of osteoarthritis that doesn't show any wear and tear, and may be present with no symptoms. According to Spine University, DISH occurs most often between ages 50 and 60, with more cases reported in men than women. The most common ligament affected is the anterior longitudinal ligament on the front of the spine.

When symptoms do appear, stiffness and a reduced range of motion are the most common, particularly when bending sideways. With DISH, extra bone growth or bone spurs can develop. Possible symptoms of bone spurs include: difficulty swallowing, if the bone spur occurs near the esophagus; or numbness, if the spur puts pressure on the spinal cord.

Diagnostic Testing
Whether testing for ankylosing spondylitis or diffuse idiopathic skeletal hyperostosis, your doctor will begin with a complete physical examination. This includes locating any painful areas, especially related to your spine and joints. Blood tests to define or rule out other disease processes may be done.

In evaluating for DISH, the Mayo Clinic recommends X-rays, computerized tomography (CT) and magnetic resonance imaging (MRI) be used as diagnostic tools. An X-ray may show the characteristic distinction of calcification along the spine, and an MRI or CT is particularly helpful in determining if a condition is AS or DISH.

(or both...!)

Read more: http://www.brighthub.com/health/arthritis/articles/102130.aspx#ixzz1DBF4o8oc

Looks to be quite complicated to define the 'two together' - got to have up-to-date equipment and a really good radiologist to read the results. Not always easy to find the two together! (Top hospitals, like the Mayo Clinic - who are creme de la creme - or the big hospital in Houston, TX (*Excellent reports of Houston) is where you need to be looking.) Just a couple of cents worth. 'Smile'.

Oops, you're in Canada Bosun, well Toronto has a very good hospital. They should have all the goodies.

I've been busy guys - put in a different worded search, bingo!

Coexistance of ankylosing sponylitis and DISH

Simultaneous Occurance of DISH with ankylosing spondylitis

Now, the silultaneous relationship of the two together is *rare, but does exist. Rhe paers that I have skimmed through, and printed, say very few cases, c10 known (!) but possibly/probably more than that as DISH is diff to DX with AS - needs specific radiology/radiography - radiology dept...(get there!!).

ALso of great interest is the facts that DISH, when it effects the cervicals, can cause dyphragia - difficulty in swallowing. Which is where wwe came in.

Bosumsmate, thank you for the thread. Knew of the connection, but ONLY since I was DX back in Sept last, and now I know more of the disease. And, with the histories as presented here, well..... are there MORE cases of DISH that are NOT reported as they have not been DX? There's a thought now. With soooo much dysphragia reported by KAers then would not surprise me if it were not more common.

Thinnk this could well be a case for rheumies to go check into - more grist to the AS mil as 'twere?

I truly think this is important. DISH is difficult to DX, so many cases will prob be undiagnosed?

Not that one can do owt about DISH ( ) but feel that the facts of the matter needs to be addressed - if for nowt else thaan for the comfort and allaying fears of the patient.

(typoes an all friends - eyes are really 'horrible' - gritty, vile, horrible anad 'streaming'...!)

Thank you for the info on Dish, does sound interesting. I have been scoped and everything looks fine. Now i do have Sjogren's and have problems swallowing dry food or uncoated pills, so of course i drink alot of water. But the difficulty swallowing thats different. Anyway i see my Rheumy on Tuesday and will mention Dish to him. Thank you for pointing me in that direction....

I contacted one of the imaging clinics to fnd out about equipment avaiability and costs - here's what their response, but did not disclose any info on Saggital STIR...:-

We have a 1.5 Tesla machine. Regarding slices, we do as many as are required to cover the area.

The scan would take around 60 minutes to complete and the cost of the scan would be £1,709 including the thoracic spine and £1,459 without the thoracic spine being scanned.

We can give the patient a CD to take away with them, we would then need two radiologists to report the different areas of the scan.

We will require a referral form before we can scan the patient.

I hope this information helps.

Kind Regards,

Hannah Bailey

Administrator

Queen Square Imaging Centre
8-11 Queen Square, London, WC1N 3AR

T : 0207 833 2513
F : 0207 837 8074

----------------------------##

Really *expensive. Heck, I got more than that done for the same price in Bath! And they were Saggital STIR...

As for Sjogren's - yes. Right horrible to deal with, as eyes, nose, mouth, ears, lungs are affected. Keeping a bowl of water in C/H rooms helps a tad and bathing eyes in warm water also helps - and of course sipping warm water. All so tedious. But press onwards -

Take care Bosun (will ask that there clinic IF Saggit STIR imaging... )

OK. I wrote back to them for clarification - a slightly 'better' picture of what they offer, but...expensive... cemc might like to give an opinion - cemc? What you think? (Even if you don't use em Bosun info is always useful - perhaps for another person who happens along?

Queen Sq. Imaging Centre to me:-

Quote: "I can confirm that we can offer a 1.5 Tesla machine.

With regards to Sagittal STIR imaging, yes this is included in our protocol when
Anklyosing Spondylitis is queried. Giving an actual number of slices is
irrelevant, as this is entirely dependent on body habitus and selected at the
time of scanning so that, for example in the spine, adequate coverage of the
vertebral bodies and facet joints is obtained. The average number is usually
between 15-19 slices and they are scanned at 3-4mm slices at a spacing 0.5mm and
of course they are high resolution.

I hope this helps to clarify

Best regards"

Jacob Cameron MSc BMI
Superintendent Radiographer
Queen Square Imaging Centre
8-11 Queen Square
London WC1N 3AR

Ph: 0207 833 2513
Fax: 0207 837 8074
www.qsic-mri.com

Registered in England and Wales No. 1850377
________________________________________

I have this problem also.I am fused in the neck.I have to b very careful to eat steak,etc.I use ketchup now to cover foods that will choke me.I need something smooth to help take it down.It is such a scary feeling when a person is alone and starts choking.you instantly start to panic.

All the best
John

Not sure how the discussion on MRI prices in the UK started? Bosunsmate is in Canada, I think? But, over £1000 is waaaay out of my price range! Its one of the reasons I'm hesitating doing the full shift to private care for investigating my AS. But I think that is a fairly standard kind of cost - prices that places like BUPA hospitals quote for MRIs range between £300 and £1500 depending on what area it is, and it does take a lot of slices to cover the spine. I'm still hoping that a second reading of my SI Xrays will show up enough to be going on with. Interesting that they automatically do the STIR for a suspected AS diagnosis. That definitely doesn't happen in the NHS, and I don't think in the NHS they adjust the spacing or number of slices to make sure they get adequate views - it all seems a bit too standardised.

cemc - dunno, utterly 'puzzled'!! Had 'Staffordshire' firmly *fixed, hence sending the info. Melanged two ASers, the other being the member who plays the piano and had had a problem with DX? Or, was it the flute player? No, can't say, but nevertheless, your input valuable. Thank you.

Agreed, the automatically dong Saggit STIR and adusting the number of spacings/slices to ensure they get adequate views. Good. Well, if I ave to get a pvt MRI scan done in London, I'll know where to go - just so long as I have the spondooliks!!

BTW - Grimsby AS pool is under support on the NASS site. Good.

Go well - take care -

I just had an endoscopy and had my esophagus stretched. It help my swallowing significantly. I have not had any more choking problems.

I first noticed swallowing problems ten years ago, now it has become daily, food feels like i am swallowing a lava rock, coffee,or coke sometimes will go down, but not all the way. kinda freaky, feels like i could choke if it didn't go down one time. i need to mention this to the doctor.

I too have this problem l am undiagnosed.... it seems to come in clusters then doesnt happen for a while x

have you had an upper endoscopy to look at your esophagus? my husband had scar tissue in his from bad reflux/GERD. had to have it repaired several times over the years. upper endoscopies are pretty straight-forward.

actually I have even mentioned it to the doc. but i will this time, its become daily. but every time i complain, it costs me another office visit and more money money money.