- been there, done that

[Guest guest]

Hi - wow! He sounds great. I'm posting a few thoughts to you as

I've had A for over 20 years now and I was diagnosed at age 15 so I

was kind of where your son is now. Hope it helps.

>

> Yesterday my son and I met with Richter, a

> gastroenterologist at Temple University Hospital in Philadelphia

> who sees many achalasia patients. I had a long list of

> questions. Here are some of his answers:

>

> Surgery is the best option for an adolescent. For medication to

> relax the sphincter prior to surgery on days when he just can't

> get the food to go down, nitrates (isosorbide dinitrate, sold as

> Isordil) are better than nifedipine. They take effect faster (15

> minutes) and help more people with achalasia than nifedipine.

** The best thing is he should be able to do his surgery

laproscopically. 1-2 days in the hospital with minimal pain and

scarring.

>

> Dr. Richter thinks Dor fundoplication is best. After a myotomy

> with fundoplication, it is normal to not be able to vomit, but

> that may resolve over time.

** I couldn't vomit at first but I've now been able to for years. It

hurts but it works.

>

> Some are fine for 15-20 years after surgery, but there are no

> very long-term studies. Richter supposes part of the reason is

> that people don't publish their long-term studies if the results

> are bad. However, they now know that some trouble with

> swallowing recurs in 60% (sixty percent!) within 5 years after

> surgery.

** I had my surgery about 17 years ago. I did have 1 or 2 dilations

post-op - that's not at all uncommon. I have not had to have

additional surgery though. It's now been more than 10 years since I

had my last dilation. He can have very good long term results. I

swallow about 90% of what I want about 90% of the time.

>

> I asked what causes this decline. He thinks it is for two

> reasons: Either the myotomy isn't long enough, or there is acid

> damage. Acid damage to the esophagus does occur even with a wrap

> (fundoplication). The resultant scarring will cause problems

> with solids but usually not with liquids. After surgery,

> patients should continue to take a proton pump inhibitor to

> increase the lifetime of the wrap. It's also not a bad idea to

> keep the head of the bed elevated all one's life.

** there's debate about PPI's but they have very minimal side

effects. I even took my protonix while I was pregnant - both times.

Sleeping elevated is not ideal I guess, but can I tell you how I'm

just used to it? It doesn't even phase me anymore. I have a foam

wedge under my side of the bed and if I'm traveling or visiting

someone else, i just sleep with extra pillows. You get used to it.

>

> For follow-up after surgery, a barium swallow every one or two

> years is the easiest way to monitor function.

** I've also had EGD's with the barium swallows every couple of

years. Better to catch any problems or potential problems early.

>

> My son also learned something by watching the monitor during his

> timed barium swallow. He drank a cup of barium, and it mostly

> just sat there. But when the radiologist told him to do a " dry

> swallow " (swallowing motion without anything to swallow), the

> resulting pressure did move a good bit of the barium down into

> his stomach. He saw this happening on the monitor although he

> couldn't feel anything different inside. So now he has another

> strategy.

>

> Unfortunately it didn't work at the Indian restaurant where we

> stopped on the way home from Philadelphia.

>

> in Lancaster, PA

** Like the rest of us, he will learn his 'new normal'. There will be

certain foods he needs to avoid and he'll have to adjust to sleeping

elevated and he'll have to drink water with EVERY meal to push his

food down. It's hard when you're a kid. Teenagers never want to be

different in any way but thankfully he's got a great mom taking care

of him and he's got us... even though right now it's through you.

When I was diagnosed (in 1983) my parents didn't have any support

resources.

**Keep us posted on his surgery and his progress. Good luck to you

both, I'm glad you found such an awesome doctor - that makes a HUGE

difference.

Happy Swallowing!

- in Va.

>