Post-Nissen, need support

First of all, thank you for the forum. When I was researching Nissen vs TIFF this board was a huge help. I felt very prepared for what would and might happen, and my surgery (8/24), as well as the week after surgery were a ringing success. I'm off the PPIs.

I am writing because I am becoming very stressed, panicky because I have been having GERD symptoms on and off, ever since going on the soft diet (while I was on the liquids & full liquids and immediately after the surgery I felt amazing, no GERD. Physically I feel good, no gas problems, pain is gone, I can take my full breath, painful hiccups are gone). Now, panicking is my usual reaction as I had GERD for 4 years, struggled, it was very emotional, especially since I am a singer and most of my symptoms were in my throat. I am not used to waiting as I've been told by my doctors. My main panic is that I basically have to act like I have reflux: modified diet, no acid and acid causing foods, I can't sing if I feel anything in my throat, I can't recline after eating. Since 8/24 I've only sang 3 times (which doesn't a career make). The first time I sang it was incredible, as were parts of the second time I sang, but as my throat has become irritated, sore, hoarse, and feeling like there's something in my throat. (I beg of you not to say it can be something else with my singing. I know my GERD symptoms like a hawk.)

However I am confused by what my GI doc & my surgeon say. My surgeon--who is warm & chief of surgery in an major NYC hospital, very confident in his work-- says this should last forever, I should never have any drugs, and he was concerned that I was "happy" with the procedure, despite my telling him of the throat symptoms. He says there's no way it's reflux because of the wrap. But I know my body. His NP says everyone is different when you can tolerate certain foods. To be gradual. MY GI doc says look, you're only 2 weeks out, that full recovery can take 12 weeks, that I should be careful and am in recovery for 6-8 weeks; he says that scarrification of the wrap has to happen, that the GI system is a dynamic system that needs to adjust. They both say do not worry, to give it time. I also read somewhere that my symptoms, "Indirect symptoms take weeks to months to improve."

My surgeon had me thinking that I would be fixed in 2 weeks, so I am having a hard time accepting and waiting longer. This is an entirely new system of diet, of mind, of singing, and it is really stressing me out. It is very hard to have these symptoms and not have my usual PPIs to take. Meditation, exercise, I know what I have to do.

So please tell me it can get better with time. Help me wait. Please tell me the success stories of waiting, of how much better you felt in a couple months compared with the first few weeks.

scazzasofija.
Try to relax. You're just at the very beginning stages of healing. Your surgeon shouldn't have made you think that damage that was caused by years of reflux could be completely healed in just two weeks. You may have been able to sing, and not be able to now, but that does not mean that you never will.

I had severe, uncontrolled asthma, and had the surgery to try to get it under control. It took a full two and a half months for it to heal, and I'm sure it was still healing for weeks thereafter.

I don't know if your GI Doc said anything about the fact that it takes time for your wrap to heal, become less swollen, and settle into place. My surgeon said anything can happen during the first weeks of healing, and that there may well be a bit of reflux occurring, in spite of your wrap. If it is swollen and not totally healed (and it's not--remember Joy's egg beater analogy), you can be getting some reflux, regardless of what your doctors say. (You know your body, as you said.) This is not at all uncommon, and does not mean that your wrap has failed, and that you will never sing again.

Give your body a break, and let it heal. Don't try to rush your recovery, because if you do it will only cause frustration.

Personally, I see no reason why you can't go on PPI's during the healing process. Many, many people continue taking them until they are fully healed. If you think they would be helpful, why not discuss it with your GI doc?

Above all, don't panic and think this is the end of your singing career, and that you had the surgery for nothing. That is not the case. If you read posts from others who have had the surgery, you will find that it takes months for the healing and recovery to occur. Give yourself time, and don't try to rush things.

I'm no expert on voice (although I have my own struggle with mine--exacerbated by severe allergies), but it seems to me that if you were beginning to heal, then used it too soon, you could have created your own hoarseness, rather than it being reflux-oriented. I know that when my voice seems better, then I overuse it, I can be back to hoarseness.

You might want to check with an ENT about that aspect of your recovery.

Anyway, welcome to the Wrapped Club. You're in the right place! People here have been there and done that, and have stayed around to help others through the same things.
Take care, rest, and recover.
We're with you!
Denise

Thank you for your replies. Couchtater it's good to hear from a singer, and that it took until the second month. Dencha thank you for this: "My surgeon said anything can happen during the first weeks of healing, and that there may well be a bit of reflux occurring, in spite of your wrap. …you can be getting some reflux, regardless of what your doctors say…. This is not at all uncommon, and does not mean that your wrap has failed, and that you will never sing again."

This is my first surgery ever, so the idea that it would months to heal when I feel fine (other than the GERD) is mindboggling. I have to get used to it though. Perhaps I should ask my GI doc about PPIs while I'm healing. Though they weren't really effective for me, I'll have to think about it. I am rushing it, I shouldn't despair or lose hope even though I am getting reflux now.

As for using it too soon, I mentioned that my first practice was incredible, and got progressively worse as the reflux would happen in the subsequent 2 practices. Thank you for your kind words though. I'm not feeling pain. These are the symptoms that I've gotten to know well over 4 years.

Today the reflux is just feeling awful, but I'm sure my stress is a big part of that.

So good to know that this is all part of the process. I'll be keeping your words close, thank you.

"Give yourself that time...it will be worth it in the end!" Yay!

I'm very thankful for you guys. Last night was really hard because the reflux is getting worse: I am now hoarse all day and have heartburn all day. I didn't want to eat anything yesterday (not good) for fear of the reflux. I was afraid of damaging my esophagus with 6 weeks of heartburn and stressed that my doctors wouldn't understand and let me take PPIs. I also scheduled a lesson for Monday a week ago and don't know what my body will be like. So I took one of my old Protonix and woke up feeling mostly better. I can't decide if I should just use it occasionally or daily for the next 6 weeks. I'm also stressed about having to have these frustrating conversations with my doctors. But still, having PPIs as an option is an improvement, I meditated, and I didn't have a meltdown.

Scazzasofja,
I had a surgery on Aug 7 and I'm still going through tough recovery. The worst part is nausea in the mornings, just like it was before surgery. It usually goes away by afternoon, be it is exhausting. I also have throat symptoms - dry throat, hoarseness, ball in the throat. Swallowing is okay and gas is not too bothersome. The worst part is feeling pre-surgery symptoms and thinking "oh my God, the surgery didn't work". I tried to drop my evening dose of PPIs for two last weeks and I feel awful in the mornings. The pain and nausea wake me up at 4 am. I also thought the surgery is going to help right away. I saw my surgeon yesterday and he was very positive about my surgery. He said the I had a huge amount of inflammation in the esophagus, it was actually going through the walls and had some adhesions on the outside, called transmural inflammation. He said only people whose main problem is acid regurgitation feel immediate relief after surgery. But not hose who have long standing inflammation. It may take up to a year to feel good. He said I could continue with the PPIs if I wanted to, but he also said I could just tough it out with Zantac and antacids. Up to me. I think I'm gonna start taking them again tonight. I can't work without sleeping. I also was eating solid foods since two-three weeks ago and that aggravated the wrap too. So I'm gonna back down to the liquids and mash. Hang in there, everybody says that's how it goes, so let's give it time. I'm pessimistic about the whole outcome when I feel bad, but have glimpses of hope when I feel better.

Thank you both for your posts. I haven't suffered from any esophagus inflammation, but regardless I'm trying to hang in there despite the unpredictable reflux symptoms. Trying not to worry that your doctor said that only those w/o esophagus symptoms are healed immediately, which sounds like me.

I've gone back to Protonix 1/day and that helps some. Yesterday wasn't a good day since I thought I could handle a lot of acid causing activities all at once, then at night had reflux in my throat. I had exercised, sang, then decided to try tomatoes. I had to keep eating yesterday as my weight had dropped 3lbs below what's acceptable to me so my stomach didn't get a break. Today I'm recovering from that. Not being able to eat my favorite foods is a bit depressing as food is a huge part of my life, fun, inspiration as a cook & big eater (FYI I'm naturally skinny, obesity is not a problem for me when I say this, keeping weight ON is the challenge). I definitely miss my veggies, roughage & tomatoes. I'm seriously hoping my surgeon did not make this wrap too loose. But trying not to think about that.

BTW my lesson went really well. My teacher said I was at a completely new level and after one aria my coach commented that I could sing that in any first rate opera house. I'm still healing so I can't expect to sing like that all the time... yet.

Hi scazzasofija,
Glad to hear your singing voice is in good form! Try not to worry about symptoms at this stage of the game. You're just a month into recovery...you've got a long way to go. Your insides haven't healed yet, and still have some settling in to do.
Try to be patient and don't stress. It will come...
Take care,
Denise

So I'm back with more complaints. It's the middle of the second month now. Some things in my singing are better, though inconsistent is the best thing I can say about it. The worst is that I feel like my reflux symptoms are getting worse, not better. I've been back on the PPIs, but I feel like they're helping less than they did a month ago. Before the surgery the PPIs took a couple months to get to full strength, and where they were working like a charm to manage the reflux before, now they're helping less. Last night I took a PPI after feeling some heartburn, but I'd also been taking it regularly, and I thought it would help. This morning I woke up with a burning throat and esophagus. I can imagine and also feel that the wrap has stretched; I certainly don't feel anything going through it anymore, no spasms, nothing gets stuck, and I don't have to be careful about chewing my food, everything goes down easily. That last scares me since I was told I was supposed to chew my food well for the rest of my life, that food shouldn't be going down this easily.

That first singing practice a couple weeks after my surgery when the wrap was still tight, I could feel the tightness keeping my chest and throat completely clear. It certainly got worse in the next few days, and now I'm more active which could be harder on the healing. While I've sang well on occasion since, it hasn't felt like that, and it feels like it could be getting worse. Due to deadlines I have to record this weekend, so I'm on voice rest, going back to soft & bland foods, and drinking lots of ginger. I've already turned in applications with old bunk recordings so I have to record asap. I don't stress about the reflux anymore, but I'm certainly observing, curious and confused. While I can only judge after 2 or 3 months, I am starting to think the wrap is too loose.

Thank you al for all your encouragement!

Hi Joy,

From what the other posters said, I understand that having reflux at this point is common. I am having reflux, there's no doubt about it. Why do I want to see if it's refluxing? Are you saying that reflux at this point is something the doctors should see for some next step? It's not too soon? I thought it takes 3 months before this kind of questioning starts.

Thanks!

Hello everyone,

I wanted to give you guys an update on the symptoms I've been having ever since going on soft foods back in September. Things have been the same with the reflux, heartburn, hoarseness, even getting worse as I haven't had a good singing day in weeks. I've been really strict (staying hydrated, no acid, no roughage, no fats, sleeping elevated, taking meds) and nothing has helped. Last week was tough as my symptoms were at their worst and so a very important audition wasn't adequate. I saw my surgeon that week and they said this was definitely not normal, they thought it was possibly bile reflux and scheduled me for a barium swallow study which I had this morning. Sooooo the results: the wrap is in tact, I don't have anything coming up from my stomach, yay! No popped stitch, no leakage, seems like no bile reflux, no need for a second surgery which was lingering in my mind a bit.

But I did get confirmation of my symptoms, it's not nothing, not all in my head. There's "stasis" in my lower esophagus, meaning not everything is going through the wrap and then the food is refluxing back up from there. Because of my severe symptoms I'm going to have an endoscopy with "dilation" to stretch the wrap so things pass more smoothly. This definitely explains why I've been having constant heartburn which I never had before with all the stuff sitting there, why my symptoms were so unresponsive since this isn't something I can really treat by being strict, why drugs were inconsistent in helping, etc. I took your advice and had been drinking lots after eating, trying to flush it out, but this stuff won't flush. I never would have just thought this was the culprit since I don't get spasms, no pain, eating goes very well.

So, in case any of you are still interested, there it is. I'm trying to get my dilation asap as this is my final year I can compete in the Met Auditions, and that's in 2 weeks! I'm so excited I could have my voice back!

Feel free to email me: aanon44 at gmail.com

Dear Scazzasofia,

Thank you so very much! It will help me tremendously. I guess I was searching in the right directions, Marc Bessler and Paresh Shah names were mentioned to me already!

But, of course my insurance will have the last word.

And the best of luck with your procedure and your Met Auditions (wow). Go get them!

Denise,

I had the procedure today and I'm feeling a bit sore, trying not to fear that it went too far--we shall see how things go. I wanted to mention that when I consulted with my GI doc who actually did the procedure, because I wasn't having trouble swallowing he didn't necessarily consider it conclusive. He had his doubts, and so I did as well (all night last night, so I'm exhausted). My symptoms had been better this week, still inconsistent though, and especially the last 2 days I've been feeling ok. He said he would give it more time, and if it weren't for the competition and my months of misery & confusion, I think I would have. I didn't feel good about changing course the night before and my surgeon felt the procedure was the right course and the wrap would be fine. I'm just saying there was debate.

Your voice is affected, heartburn too? My GI doc said a good test to see if it's refluxing would be an impedance probe (but god those things suck). I think you're good to ask your doctor, and I'd say give your GI a call and talk it over with them too.

Thank you for all your support, let me know if I can do anything.

S