Esophageal dysmotility - failed esophageal manometry test - where do I go from here?

[SS01]

I am a 40 year old mother of 2 young children and have suffered from dysphagia since last year, starting with pill dysphagia in the last months of pregnancy, and then gradually to solids which became acute in September 2018. I am obese, although have lost 12 kgs in the last 2.5 months due to not eating well. I am seeing consultants via NHS and another privately in London, and have been on Omeprazole 20 mg x 2 a day for nearly 6 weeks until 5 days before the manometry (on Saturday 1 Dec). The Omeprazole seemed to help a little. it stopped my excessive burping. I have Gaviscon after meals. Until the manometry, I was still eating soft solids after chewing them really well.

First & second tests - endoscopy was clear (no signs of esophagitis, biopsies OK), barium swallow was largely fine but showed a brief delay in clearance only when I was lying prone and drinking the Ba solution. However, the manometry was a spectacular fail. I found the process very distressful and nearly choked while the tube was going in. I failed all water swallows (not helped by a seemingly inexperienced technician / nurse). There was some evidence of peristalsis in the upper 3-5 cm of the esophagus but none below that, I was told. I could not even proceed to eating food with the tube in since i could feel it all the way and was very uncomfortable. it was a bit rushed and over in 15 mins. I was meant to get a 24 hour ph monitoring done after that but couldn't get through it. The LES was also slightly loose, he felt (I don't have the test report yet).

The lab nurse suggested the aperistalsis may be caused due to GERD, Achalasia (but none seen in endoscopy or Barium swallow) or by scleroderma. The last suggestion scared me I don't have other clear symptoms of scleroderma I think - I do have sporadic eczema, and mildly raised inflammation markers - CRP and ESR. I have got a blood test for ANA done today and awaiting the result.

Where do I go from here? Up till now, my private gastro consultant felt my dysphagia was linked to anxiety and had even suggested seeing a psychiatrist for it. Now there is a physical cause. I didn't take up his suggestion, but I realise that ongoing health anxiety is making eating worse. Stopping the omeprazole before manometry didnt have an immediate effect except a sour taste in my mouth, but now - even though I have been back on it for nearly 2 days - I still have excessive burping, the feeling of pressure behind the sternum,and I am barely able to eat - i feel food is getting stuck on the way down though I am chewing well (though I don't feel like vomiting). I wonder if this deterioration is due to anxiety from the manometry result. I am not due to see either of my GI doctors until later and I am terrified of the outcome. I am barely making 1,000 calories a day and don't have enough energy to take care of my children, and work.

Questions:

1. Can GERD (without obvious signs like oesophageal erosion) cause such severe dysmotility?

2. Can oesophageal dysmotility be the presenting symptom for Scleoderma / systemic sclerosis? Other causes to explore? I read something about the vagus nerve.

3. Are there non-surgical ways to improve oesophageal motility (e.g. hot water swallows, Busiprone, etc.

4. How did you address anxiety around swallowing? I am experiencing food aversion, but at least my GP doesn't seem concerned.

Thank you!

[Garysreflux]

Hiya .. Your condition appears complex. As a layman i cant give u explicit advice but please draw on my experience to hopefully help u manage your current situation.

Acid reflux caused scarring in my oesop as a result i get swallowing difficulties. Ive had a nissan 360 op which fixed my hiatus hernia and reflux (im off all tablets) but a year post op the swallowing diffs persist and my oesop remains funnel shaped (distorted thru food backing up). The current thinking for me is that coupled with the oesoph scarring the nissan wrap may be too tight and a follow up op is llikely in order to reduce the nissan from a full 360 to a 270 wrap. This shld result in food going down easier and hopefully my oesoph shrinking back to normal shape (its 10x wider than normal at pres).

I was tested for alchalasia via a mamometry procedure. Twice this failed as they couldnt fiddle the tube thru to my stomach. Mammotery is the worst of all procedures ive had. I understand how u feel.

1000 calories a day doesnt sound too good. U may need to juice up .. a starter to consider .. joe rogans hulk load on youtube. Healthy eating is essential to support you thru upcoming treatments.

I drink sparkling water with my meals both before eating (to clear the ways) and during eating. This both flushes my oesoph and also invokes a burping reaction (shudders my oesoph) which in my case helps move the food on to the stomach. If food remains stuck i may suck on a sweet (sugar free??) and sometimes the saliva generated frees things up. If i havent chewed food properly and it blocks i may have to induce vomiting to clear my oesoph.

Wish u well

Gary

[SS01 in reply to Garysreflux]

Thank you - this is helpful.

Do you have any trouble swallowing pills and how do you deal with that? Additionally, have you tried drinking alkaline water? Does it help with GERD at all? Are you taking acid reflux medication? I am taking 2x omeprazole 20 mg per day and am worried about long term use (already been nearly 2 months).

[Garysreflux in reply to SS01]

Hiya .. just had treat .. bread and butter pudding .. but it clogs my oesoph but not with sparklin water. So that was gd.

YOUR MAIL COPIED .. MY STUFF IN CAPS

Do you have any trouble swallowing pills and how do you deal with that?

.. DONT TAKE ANY MEDS NOW

.. CAN STRUGGLE SWALLOWIN VIT TABS/CAPSULES. FIZZY WATER AGAIN OR 1 TAB AT A TIME EVERY 30MIN.

Additionally, have you tried drinking alkaline water? Does it help with GERD at all?

.. NO .. INTERESTED TO KNOW IF THIS WLD HELP CONDITION

.. RECALL READIN ABT GEN HEALTH BENS OF ALKALI BODY

Are you taking acid reflux medication?

NO

I am taking 2x omeprazole 20 mg per day NOT MASSIVE DOSE .. CONSIDER IMPACT IF U DROPPED TO 1X 20MM

and am worried about long term use (already been nearly 2 months).

.. FROM READING AROUND I WOULD WORRY TOO .. AT THE MINIMUM IT AFFECTS BODYS MINERAL ABSORBTION .. IMO GOTTA TARGET BEING TABLET FREE

.. BUT I WAS ON 1X 20MM/DAY OMPREZ FOR 10MTHS. THE CHOICE WAS

1. LET ACID CONTINUE TO BURN OESOPH PLUS ALL THE NASTY STUFF THAT CAN TRIGGER OR

2. RETAIN OESOPH AS IS AND RISK SHORT TERM HIT WITH OMPREZ.

I CHOSE 2. HOW HAPPY WAS I WHEN HH OP WAS A SUCCESS AND I STOPPD ALL MEDS.

I MENTIONED I MAY HAVE OP SOON (DISCUSS WITH DR .. LATE DECEM) TO MODIFY MY NISSAN 360 TO A 270 (A LOOSENING) TO HELP FOOD FLOW THRU OESOPH BETTER AND SHRINK IT FROM A FUNNEL BACK TO NORMAL SHAPE. I CAN ACTUALLY COPE LIVING AS IS. THE BIG FACTOR IN MY DECIDING ON OP WILL BE WHATS RISK OF REFLUX RESUMIN AND HENCE OMPREZ AGAIN

CHEERS

G

[Horses444 in reply to Garysreflux]

I have posted this advice before maybe you can find it or just look it up on general google search it helped me recover from radical Ivor Lewis surgery basically low acid ie alkiline diet with low sugar and carb anti inflamitory as well plus an enzyme call Serrapeptase to eat up dead scar tissue. It all worked well for me. You live on protein and above ground veggies no sugar of any kind and only 50 grams of carbs per day no acidic foods like tomato or oranges you can look all 'tis stuff up on google . It is not that hard and you can eat much as you like no restriction on quantity just as long as you stay alkaline and sugar free. This diet will lower weight and inflammation and allow your body to heal itself it worked for me everybody is different and some people cannot do without certain foods but give it s try

CJ Mudgee NSW Aust

[Garysreflux in reply to Horses444]

I listen to a podcast .. natural solutions radio with eliezer ben-joseph .. he refers to serra... for removin scar tissue. I should look into it .. my oesoph narrowing is attributable to old scar tissue. What do think.

Alkali diet as well is interesting.

Thanks

G

[Horses444 in reply to Garysreflux]

All I can say is it worked for me docs use it in Europe and Asia as a matter of course after all surgery buy the strongest form you can get you need at least 500 to 1000 units a day it's never too late but the sooner the better I got 240 SPU caps took 2 twice a day as things improve you can cut back I paid $90 for a bottle of 120 caps You can either just cut back on acidic food or only eat alkiline food a bit of bicarbonate soda will help too

Good luck

CJ

[Garysreflux in reply to Horses444]

Huya .. Any side issues with the serrapeptase. Thanks. G

[Horses444 in reply to Garysreflux]

I haven't had any side effects with Serra just take them on an empty stomach otherwise they may work on the fresh protein that you have eaten instead of the dead scar tissue also drink at least 250mls water about half a pint

Go for it

CJ

[SS01]

Just wanted to update this thread 2 months on.

I'm about the same as before as far as swallowing goes. Sometimes I can eat without any discernible problem, but I do feel hypersensitive with some types of food - bread, meat etc. I can"feel" it slowly moving down my esophagus. I am still on 40mg PPIs a day. Going to have a Bravo test to measure ph in esophagus in a couple of weeks. Hope it is better than the manometry which I felt was truly diabolical. I had refused the 24 hour ph monitoring with the tube down my nose. I typically dont feel food stuck except a couple of occasions.

My NHS consultant has also referred me to Rhematology to rule out Scleroderma, although I hope it is not that. I had a negative ANA test (IFA method) a few years ago, but it was now positive at 1:80 with a speckled pattern. My ENA screen, and a few Scleroderma and rheumatoid arthiritis antibodies tested for were negative. My private GI consultant and another rheumatologist I consulted privately have dismissed my concerns that it could be scleroderma or another type of mixed connective tissue disease since I don't seem to have other symptoms indicating these.

My weight loss has levelled off which is good (never thought I would say this). I have only lost 1 kg over the past month, although am down 15 kgs. since September 2018. I have another 20 kgs. to loose at the minimum, but hopefully not at a dramatic rate. Recently, I have started taking supplements in liquid / spray form - Magnesium, calcium, iron, B12, Vitamin D, curcurmin. Still to see if these have a positive effect. So glad to see vitamin sprays on the market - I could never bring myself to swallow large pills now.

I am next going to try alkaline water, and to further limit intake of acidic food. I still have reflux symptoms (burping, sour taste in my mouth) occasionally probably because of the loose LES.

Gary, hope you are doing well....

[kombuchachips in reply to SS01]

Hi, your situation sounds similar to mine, the gastroenterology department are done with me after seeing nothing in my endoscopy and barium swallow, I have been told either hypersensitive or dysmotility of the esophagus. My doctor wanted me to try an antidepressant but I am going to try acupuncture, I had 2 sessions then my acupuncturist had to go away so I am waiting for him to return and start again. I am 42 next month, female no other health concerns healthy bmi but had a bout of IBS and within 2 months could no longer eat anything that doesn't dissolve. I hope you get answers soon.

[SS01 in reply to kombuchachips]

Thanks for responding. How did you get on with your first couple of acupuncture sessions? Hopefully there was a discernible difference.

I am yet to try acupuncture since haven't found a practitioner who deals with Esophageal issues but I did try osteopathy. However, it seemed to backfire because I ended up with weird headaches that continue off and on (I barely ever had headaches before these treatments).

I am slowly getting used to my situation and at least the weight loss has stopped. So far, I am able to eat most things except hard, chewy food like meat. It takes me longer since I chew more. I hope this doesn't deteriorate further. I need to have a 24 hour pH monitoring test done to measure acid reflux. Some days are better than others and I feel drinking warm water helps.

[kombuchachips in reply to SS01]

Hello, I did think I felt a difference but I'm not sure if it was wishful thinking. It's hard to find anyone with any real solutions, but once I start again I'll let you know, I'm feeling pretty desperate and willing to try anything except drugs unless they're proven to work, because often you have to take another drug for the side effects of the first drug and so on. Im thinking it's a nervous system thing so I am looking into supplements. And I read somewhere to try chewing gum regularly to stimulate the vagus nerve. I got very thin to begin with because I was scared to eat anything, then discovered I could eat, chippies, cheese and crackers, chocolate and gained weight but now I'm trying to eat healthier which is very limited. I have vegan protein shakes, brown rice crackers, juices and pumpkin soup. I try to stay positive, my husband and children help, they adore me and I want to be the best I can for them. Sending you best wishes in this journey that I'm sure will only make us stronger 🙏🙏🙏

[Ollyburr]

Hi SS01 are you still in this site?

[SS01]

Not active, but I get updates. Feel free to send a message if that's possible.