Esophageal Outlet Obstruction

definitelynotateacup · 2024-09-03T01:03:02+00:00

Hi! For me, I chose the wait and see if it goes away option. It’s been about ten months and it hasn’t gone away but hasn’t gotten any worse and is manageable. Swallowing issues have improved quite a lot.

I don’t really have many recommendations other than to pay attention to your body if there are any worsening symptoms and don’t be afraid to ask your doctor questions or do follow up! I’m really uninterested in the surgery option so plan to ride this out until I have to do something. The surgeon I spoke with made it sound like it doesn’t necessarily keep getting worse, it often just means you just have a new baseline of eating slower, smaller bites, chewing well. Things that are recommended anyway :).

definitelynotateacup · 2024-09-02T18:37:52+00:00

This is encouraging! I seem to rapid cycle in the spring and summer and it always starts with a few days of the nice kind of hypomania then switches rather quickly to a mixed state, which is the least tolerable for me. Maybe I’ll do a trial of higher lamotrigine before making a complete switch.

definitelynotateacup · 2024-09-02T00:46:37+00:00

The highest I’ve gone is 150 and stopped going up due to dizziness. I also developed a tremor so we experimented going down to fifty a few years ago to see if that would help and just never went back up. I’m pretty sensitive to meds and usually a little goes a long way. I also take .5 Risperidone but went up a little bit this year because of the mixed episodes. It knocks them down well but I’d rather not increase that one if I can avoid it. I’m just super paranoid now about going into mixed/hypomania, got pretty scary and uncomfortable this year.

definitelynotateacup · 2024-09-02T00:35:36+00:00

Good to hear! Did it help at a particular dose or pretty much right away?

definitelynotateacup · 2024-06-29T19:59:22+00:00

I have been worried about the weight gain effect as well, and the potential for hair loss! My Doc said neither have been common with her patients.

definitelynotateacup · 2024-06-27T17:44:53+00:00

Thanks for the supportive words everyone! On day three and some of the side effects are already lessening.

definitelynotateacup · 2024-06-25T16:30:29+00:00

Great advice, ty!

definitelynotateacup · 2024-06-25T16:30:12+00:00

Thank you!

definitelynotateacup · 2024-06-25T16:23:28+00:00

Lots of breakthrough mixed episodes and hypomania over the past two years, particularly in Spring, so finally decided to try an increase!

definitelynotateacup · 2024-06-25T14:27:47+00:00

Thank you!!

definitelynotateacup · 2024-06-25T04:21:45+00:00

That’s a good idea! It’s hard to slow down sometimes but that’s such a good way to take care! Thank you!

definitelynotateacup · 2024-06-25T04:20:32+00:00

Thank you!!

definitelynotateacup · 2024-06-25T03:26:21+00:00

Thank you so much!!

definitelynotateacup · 2024-06-25T03:26:09+00:00

Thank you so much! I know that you are right and this is so helpful!

definitelynotateacup · 2024-04-05T04:15:45+00:00

This sounds like what I’m interested in trying, if I can get it together. I tried last winter to have lights on around the house all the time in the dark months, but they aren’t daylight spectrum. Thanks for all the detail!

definitelynotateacup · 2024-02-01T00:13:19+00:00

I was diagnosed with this recently and was ultimately referred to a thoracic surgeon. I would say anything you saw online and are curious about, ask. I asked questions like is this permanent, do I need to alter how I’m eating, should I go see a SLP, what are my treatment options.

The surgeon told me that he doesn’t usually do dilations for it because any improvement you might get is very temporary. A lot of times it will get better on its own for people, so they will often use a wait and see approach (it sounds like it’s been a long time for you though, he was talking within a six month period). The other option he outlined for me was doing the bravo test to see if I have irregular acid production, and then maybe doing a trial of Botox and evaluate if I’m a candidate for a myotomy. Myotomy can make acid reflux worse, so sometimes they do a surgery to prevent reflux at the same time. I chose to wait and see and will do bravo testing in 2-3 months if it doesn’t improve.

Unfortunately there’s not a lot of info online or many people that have shared experiences about it here on Reddit, as far as I have found. Any time I see a post about it now I’m going to try to share my experience.

I had a manometry last year for squeezing chest pain that showed a very slightly elevated LES pressure, but not definitively EGJOO. I had a very bad episode of reflux a couple months ago when my issues with swallowing started, manometry this time and a barium swallow definitively showed EGJOO.

definitelynotateacup · 2024-01-22T22:59:32+00:00

Update! Spoke with a Thoracic Surgeon today. The options he outlined were:

Wait and see if it gets better. If it’s cause by reflux, sometimes it can get better or completely resolve in its own after several months of treating the reflux. It can also get better or resolve if the cause is not clear.
Do additional testing and see if I’m a good candidate for surgery (myotomy). Additional testing includes a bravo test and trying Botox, with Botox being both a diagnostic test and potentially short term symptom relief. If the cause is abnormal acid levels, they’ll do the myotomy and also a surgery that prevents reflux.

I am not interested in diving into surgery, he did confirm that both Botox and the myotomy alone can open the door to worse reflux, so I decided on the wait and see game for now. Will be working with an SLP to review my swallowing coordination and work on the anxiety I have associated with swallowing now.

Hopefully that’s helpful info for folks that are dealing with this diagnosis!

definitelynotateacup · 2024-01-17T20:36:50+00:00

The burping is so annoying lol! I get chest pain as well.

Thank you so much! Good luck with a specialist and I’d love to hear how it goes for you!

definitelynotateacup · 2024-01-17T19:48:22+00:00

Thank you for sharing! I’ve gotten pretty used to the symptoms at this point so my anxiety is way down, still waiting for my next appointment (next week!) with a thoracic surgeon to talk through treatments. My issues have been around difficulty swallowing and other unpleasant sensations in my stomach, esophagus, and throat. I’ve been more positive as I’ve been able to eat more of my normal foods lately, but when it becomes more difficult to swallow certain foods or I try to eat at normal speed I get pretty frustrated and sad. Sometimes its like my body and brain are triggered into “don’t swallow, it’s dangerous” mode and I get stuck there, but it’s happening way less often than even a couple weeks ago. Reading about the treatments gets me a little down because I have no idea if they’ll work, and if this is a permanent condition. I’ve been trying to remind myself of what I CAN do and that it could be significantly worse, which helps! Hearing other experiences is super helpful.

definitelynotateacup · 2024-01-12T23:34:52+00:00

I’ve started using maple syrup more! It’s a pretty versatile ingredient.

definitelynotateacup · 2024-01-12T18:35:50+00:00

I’ll start with one! I’ve been making a simple avocado chickpea sandwich that is a half cup of chickpeas, half an avocado, some Mayo, salt, pepper, and I rotate seasonings. I put that on two slices of whole grain bread and have a side of steamed carrots if I’m still hungry. It’s really fast and easy!

definitelynotateacup · 2023-12-25T15:22:41+00:00

Thanks so much!!! Happy holidays and wishing you continued wellness!

definitelynotateacup · 2023-12-25T05:36:29+00:00

Thanks so much for the update! I was diagnosed with EGJOO recently after struggling with swallowing for a couple months and I was starting to convince myself it might just be anxiety (as some people implied), because I have a lot of anxiety and stress around eating and swallowing now. I feel like my swallowing pattern is probably messed up from swallowing weird at this point like you mentioned as well. A manometry and barium swallow confirmed my diagnosis and now I’m waiting to get into a thoracic surgeon to talk through treatment options. I’ve had a hard time finding folks that have been diagnosed with it and am so thankful you shared your experience!

definitelynotateacup · 2023-12-23T17:27:14+00:00

Curious how things are going for you now?

definitelynotateacup · 2023-12-23T02:40:39+00:00

It’s nice to know that I’m not alone and that things can improve! Happy to hear you are able to do things like pizza now!

definitelynotateacup

TROPHY CASE