NovaLuna

Welcome to the forums and congrats on your surgery date! I had the Loop DS so a little different from the traditional DS, but I'm grateful that I did it every single day!

If it helps it took them almost a month to approve mine. Yeah. They told me two weeks and it took three and a half. I was anxious the entire time and thought they wouldn't approve it for some reason. I also had Medicaid, for reference.

Congrats and I went through the same thing. I was a chronic staller. It's incredibly frustrating, but some of us are unlucky like that.

So, here's the backstory... in 2016 I was diagnosed with Trigeminal Neuralgia (it's a condition that causes chronic facial pain that is so horrific that it's recognized as one the most painful conditions known to mankind and has garnered the nickname 'Suicide's Disease') and I have both 'Typical' and 'Atypical' TN and I had a flare that lasted 10 months and I was in so much pain that I had many moments where I would think of ending my life to escape the horrific pain. My family was the only reason that I held out. I tried to take it day by day, but it was horrific. It's like being dropped into hell while still being alive. Having to live every moment where every tooth in my mouth hurt from the inside out and it feels like needles were digging into my jaw. And THEN I would get stabbed in the face by a scalding hot poker that twists and twists and twists and twists and then pulls out and repeats endlessly. I was in excruciating pain every second of every single day for 10 MONTHS! I felt like I was slowly going insane. I would get 'power naps' of like 5-15 minutes when I would get a miraculous break in the stabbing pain, even though the tooth and jaw pain stayed, because I was so exhausted. On average the power naps would maybe equal 1-2 hours of sleep a day. Though there were days I didn't sleep at all. AND I had to sleep sitting up because laying down was a trigger. But finally after 10 months I had something called an MVD (Microvascular Decompression) in May 2017 which is a type of brain surgery and that was the end of that particular flare and the pain.

However, Trigeminal Neuralgia doesn't have a cure. The brain surgery was basically putting a patch on it and hoping that it held out for years. The brain surgery was for the left side of my face, but I have Trigeminal Neuralgia on BOTH sides (just the right rarely flare and if it did it was usually only 3-5 days TOPS and then it wouldn't bother me for MONTHS. One time it didn't flare for 22 months which is almost two YEARS. For reference, I was officially diagnosed in 2016, but I've had TN since 2010). In September 2021 I started getting eye twitches (on both sides) and then other facial twitches and I KNEW it was coming back because the twitches are symptoms of an oncoming flare. I remarked to my family members in absolute fear and panic that I felt that it was going to come back. It's been my biggest fear of it coming back. Then in April of this year it hit. The right side started to flare (with random ass flares on the left as well) and at first I could withstand the pain, but it got worse and then I was put on Gabapentin and I gained 18 friggin' pounds! I couldn't stop taking it because I was in so much pain that the meds were keeping me sane. However, I kept having to increase the dose because the pain was getting worse and worse. I ended up taking the max dose and then one night the pain was so bad that I was sobbing on my bed and the thoughts of just taking a handful of the pills hit me and it scared me. I went to the ER the next day and they were so busy that I had to wait three hours in the waiting room while I was sobbing in pain in a chair while strangers kept staring at me because I was curled up in a fetal position in a chair sobbing my eyes out because I was in so much pain and it's breezy in there and that was making it WORSE! I knew from experience that I had to do the research myself because the doctors don't know crap about Trigeminal Neuralgia because it's rare and they don't know how to treat it (it's usually treated by a neurologist. But there are none in my county that take my insurance). So I gave the doctor my list of medications and told her that Oxcarbazepine worked well with Gabapentin and so she gave me enough to last me until I could get into see my PCP. And miraculously it WORKED! I was able to slowly lower my dosage of Gabapentin by HALF (I was taking 3600mg which is max dose. Now I take 1800mg) and take 900mg of Oxcarbazepine. And because I was able to drop my dosage of Gabapentin I've been able to drop 12 of the 18 pounds I gained, but the last 6 pounds just will not come off! I'm still having a flare. I still feel the pain in my face, but it's muted (mostly. Don't stick me in a breezy room or the pain worsens. And sometimes eating sets it off and makes it worse. And sometimes lying down sets it off too. Also, cold or hot things will sometimes set it off. Yeah, eating is not fun. At all. Also, I don't sleep at night because it flares worse at night). I'm supposed to be going to have acupuncture for my Trigeminal Neuralgia next week and my hope is that it'll fully take the flare away. I also FINALLY get to see a neurologist in three weeks though I have to drive two hours away to see one because no one near me takes my insurance. I have a sneaking suspicion that the flare is actually caused by my Mast Cell Activation Syndrome because I've been having more and more issues with rashes lately (though when my face originally started to flare in April my MCAS was fine. May and June too were fine, but this month my rashes have gotten bad and so has my joint pain which is caused by osteoarthritis and fibromyalgia, which the fibromyalgia is suspected to be caused by the MCAS). To top it off I can't figure out why my face is so damn greasy. I mean I was using topical lidocaine on my face to help with pain management for my TN (in addition to the anticonvulsants, i.e the gabapentin and oxcarbazepine, I take over the counter stuff like Tylenol, Tumeric Curcumin, and Alpha Lipoic Acid to help with pain management) but I had an allergic reaction from overuse (I'm assuming) called Petechiae (which caused red spots on my eyelid) so I stopped using it, but my face has been super greasy every since. And I've been losing more hair lately almost like when I was in the weight loss phase of my surgery. I know it's one or both of the anticonvulsants, but I can't stop taking either one so I'm not sure what to do.

So yeah. Just felt like venting my frustration. It's been a rough three months (almost four) and I just needed to unload. If you've read this far, thank you. If you have advice on the greasy face, Hair loss, or how to lose the extra 6 pounds while taking two anticonvulsants that make it damn near impossible then please help! If you have any experience with Trigeminal Neuralgia or MCAS and have advice then please share that as well...

I had hair past my butt when I had my surgery two years ago and I cut my hair to my shoulders when I was about 18 months post op. I'm glad I waited to cut my hair, personally. I had a lot of hair thin out earlier on and had my hair been shorter it would have been a lot more noticeable, but since it was longer no one but me really noticed.

You're in a stall. And your weight loss is in normal range because you started at a lower weight. You lost 10% of your body weight in two months. I lost 11% of my body weight in the first two months. Very similar. You're on track. Pounds wise, yes, I lost more, but I also started well over 300 pounds. Try not to stress as your weight loss is on track. Though yes, stalls are frustrating. I had many, many, many, many stalls in my journey. Several even that went in the 40 day range (which is way beyond the norm which is usually 3 weeks) so I fully understand how disheartening they are. Just keep on track and it'll break in time. The stalls are generally just your body trying to readjust itself.

9 hours ago, janet dekker said:

Hi i am not sure this will help you at all but my daughter has it as well the only thing that works for her is a compounding medication that the pharmacy makes up its called sodiumcromoglycate capsules 100mg she has to have them before she eats the only problem is we are in australia but you never know it may be of some help speak to your immunologist

I'll look into it, thank you!

So I have been having some really bad rashes and some other symptoms for months now that I just never pieced together and thought 'these are being caused by the same thing'. Well, it turns out that I have something called MCAS which stands for Mast Cell Activation Syndrome. Basically my body is producing too much histamine, taking in too much histamine, and then randomly attacking itself, etc. I was told I have to go on a low histamine diet and avoid trigger food or foods that make the histamine in my body basically stand at attention even if that particular food is low in histamine (chocolate... no chocolate! 😭). This includes no dairy because dairy tends to be high in histamine, but how the heck to I do that and get the Protein that I need? Is anyone else on a low histamine diet? I don't see the nutritionist until next month and I need the advice on my diet now so does anyone have any ideas? I could really use the help...

The Hair loss thing was really only noticeable to me. I knew that more hair was coming out when I brushed and in the shower, but no one else notice. Yes, I did cut my hair (I used to have hair that went to my waist and cut it to brush my shoulders) but the hair cut was because I hadn't cut my hair since I was 15 (I'm 34 and had just turned 34 when I cut it) and I was in desperate need of a cut.

I don't have experience with pregnancy at all, but my PCP had weight loss surgery and had two more kids after the fact. With the DS though, it's still best to wait at least 18 months post op to make sure you have your Vitamin levels where they're supposed to be because if you get pregnant too soon it can lead to health complications so that's why it's suggested to wait a full 18 months.

Also, your taste buds change after surgery so don't get too attached to a certain Protein Shake because you might not like it post op. The one I bought I liked pre-op, but post-op it was far too sweet.

Also, I wanted to share that my doctor never warned me that there is a 3% possibility of developing a wheat allergy or Celiac's Disease post op so I'm warning you that it is a possibility because they didn't tell me it was until I discovered that I have a wheat allergy. So while it's unlikely to happen to you, it would have been nice if I'd known... I still would have done the surgery and it was still one of the best decisions I've ever made for myself, I just wish I'd been prepared for it to be a possibility so that's why I'm sharing that with you.

I wish you the best on your surgery journey and I hope that everything works out for you!

I was both a slow loser and a chronic staller. But I still got to my goal weight and even went a little past it. I'm in maintenance now and the only thing I can tell you is to try and not stress about it (which you will still undoubtedly do, because I know I did).

I didn't have a revision, but when I was doing the research on my surgery I ran across a few peoples posts about how they revised to the DS and their weight loss. I remember one lady was in the 350's prior to her original surgery (gastric bypass) and got down to the 190's but then gained all her weight back and so had a revision to the DS and went from the 350's down to the 180's (she got to 170's after skin removal). I was actually considering the gastric bypass surgery at the time and I just kept thinking 'what if it fails' I didn't want to go through another surgery so I chose the Loop DS as my main surgery and it's worked great for me so far. I figure by the revision comments that I had stumbled on in my research before my surgery choice that your weight loss will probably be about the same, maybe slightly less than it would be with a fresh surgery but you'll probably still likely lose 70+% of excess weight. Just might be a tiny bit slower than a first time surgery.

I tried every diet I could for more than 10 years before I did the surgery route. It would take me an entire year prior to surgery to lose 20-30 pounds and if I went off track I would gain back what a lost with interest within a very short period of time. It was ridiculous and disheartening. Surgery has been the only thing that has helped me take the weight off and keep it off. It's not impossible to do it without surgery, it's just unlikely. My mom was one of the rare ones who was able to lose a significant amount of weight on her own and keep it off because due to all her allergies she can't have WLS (she's allergic to Vitamin supplements. seriously, they give her hives). My mom was over 400 pounds and at her lowest weight she got down to 180 on her own. She's maintained in the 230's for the last 20+ years. I tried the diet route, but my weight would barely budge and then I'd get upset and go off track and gain what I lost and extra and so at my heaviest I was 392 pounds. I took the WLS route when my niece was born in 2019 and it hit me that if I didn't DO something that I wouldn't be around to watch her grow up. Now my weight bounces around 175-185 and I just lose and gain back the same 10-11 pounds since I hit maintenance back in September. I'm much happier now and wish I had just done this for myself years sooner.

Well, I had a different surgery (though my surgery DOES have a gastric sleeve stomach, if that counts), and likely weighed a lot more than you, but I'd lost 84 pounds at 6 months out. It sounds to me like you're doing great! 60 pounds is something to be proud of! As for the amount I eat... I can eat around a 6-8 oz now and I'm 23 months out. If I try to push I get uncomfortably full and then feel like I'm going to vomit for a few hours (I've only done this a handful of times, and all four or five times it was because I ate too fast and my eyes were bigger than my stomach. I regretted it so much because I felt like crap for hours after. I have not been able to vomit at all since my surgery, even tried to make myself when I somehow got wheat into my system as I'm allergic and I didn't fancy a trip to emergency room, but couldn't vomit.)

Not with their medical weight loss program and that particular surgical team, but I did have brain surgery at Stanford and they had a fantastic team of doctors who took great care of me. If I ever have to do re-do my MVD (which is likely because it's just a temporary fix for my trigeminal neuralgia) I'll definitely have my surgery again at Stanford.

32 pounds in a month?! Wow! Great job! 😀

Noodles and rice swell so it's not the best idea to have them so early on as it can stretch your stomach out. I eat cauliflower rice (haven't had actual rice since my surgery almost two years ago), but cauliflower rice is wet so you can't cook it in a casserole or anything like that. It's good in stir fry though. It has no flavor so it takes on any sauces you add to it. G.Hughes makes some really great sugar free sauces. As for noodles... chickpea noodles are high in Protein and break down easily so they'd be a good replacement, but don't put them in a crockpot or let them simmer in liquid after cooking because they get soggy.

It really depends on what stage you're in and your surgeons guidelines. Every program is different. At a month out I was getting around 400-600 calories a day and my nutritionist allowed 10% of your calorie intake for carbs (not in counting net carbs. She said count the whole carbs NOT net carbs). Now that I'm almost 2 years out and almost in maintenance I eat around 1300-1600 calories a day (the latter bit is on bad days) and I'm allowed 30% carbs, but I try and keep it to 10%. Fat, I didn't and still don't count. I just get low fat or no fat stuff.

19 minutes ago, lindseylovesdogs said:

do you know what dose you took/take?

They're 550mg per pill.

Some people hold onto the IV Fluid from their surgery for slightly longer. You may just be one of those people. I'd say give it another four or five days before stressing about it. Your weight loss should pick back up then.

My surgeons office doesn't see patients until the day of surgery unless they request a face to face appointment with them on the one or two days a month that they're in the office (the practice has four surgeons. Fridays there's one in office, but it never seems to be the same one week to week). It sounds like your surgeon's office is probably the same. You can either delay your surgery and make an appointment to meet the surgeon face to face or just keep your appointment for the surgery because you'll meet them before they put you under (or at least that was my experience) and you get to ask any questions or voice concerns beforehand then. But... if you don't like the answers they give you or their bedside manner, you can always leave. They can't force you to stay and have the surgery if you don't want to. However, if you're more comfortable delaying your surgery to meet the surgeon beforehand then do so and voice that to the front office staff. Stress that you're delaying your surgery because you want to speak with the surgeon face to face and then schedule your surgery after they can get you an appointment with her if that will make you more comfortable with things.

I dealt with chronic nausea as well. After a while I noticed it was triggered more by if I waited too long to eat or if I ate too much. In addition to prescription anti-nausea I started taking two ginger root pills a day to supplement when the nausea got really bad and the ginger root helped sooooo much! It's still my go-to when I get nauseous.

I lost 23 pounds the first month and I was heavier then you. 20 pounds is a fantastic amount of weight and is on the higher side especially with your starting weight. Unrealistic expectations for the surgery are common because of the show 'My 600 Pound Life' but your starting weight was less than half of theirs and thus your weight loss isn't going to seem as significant, but you're on track and doing great. I had the same unrealistic expectations and you'll have to work on lowering your expectations to be more realistic with your weight loss or else you're constantly going to be beating yourself up thinking that you're failing when, in fact, you're not only on track, but ahead of most people at the same point in time. Put this into perspective: You lost almost 8% of your body weight... in less than a month! How is that failing? Be proud of yourself! You've done great thus far!

Most stalls last from 1-3 weeks, but I did have a few past that. My longest ones were in the 40-odd day range, but then I'm also close to maintenance.

15 hours ago, NoSugarJustWater said:

oh god...so if i lay down and do nothing would it help? or its better if move around?

Depends on what's causing the pain. If it's the gas then try and bear through it and walk as much as you can. If it's the incision then walk a bit to work the gas out, but don't overdue it. You do still need to walk to get the gas out and also to ensure you don't get a blood clot (since those can happen after surgery if you don't move around).

I remember the incision where they took my stomach out of hurt really bad for a little over a week. I had to have help showering. But, that was only getting up, sitting down, or laying down. Once I was down, I was pretty much okay and I didn't take any pain killers other then Tylenol after the first five or six days so the pain does get bearable before it disappears completely. I'm sorry you're struggling! I'd ask the doctors for some more pain killers if you feel like you need them. The gas also caused quite a bit of discomfort and pain, but walking helped get rid of it. It did stick around for a few days though...