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Re: Having Bariatric Surgery, has anyone else had this done?

Suzi, hope your surgery goes well and that you have great results! I have never known anyone with MC who had gastric bypass, but as long as the doctors are careful about the anesthesia and keep an eye on potassium, you should be good. If you are given liquids to drink after surgery, be careful about products like Ensure which contain a lot of sugar and potassium additives which might make the myotonia worse.

When you have your pre-op visit, make sure the anesthesiologist takes notes and has the protocol for MC (you can get it from the website link above). Also the morning of your surgery, ask to talk to the anesthesiologist who will be doing there in the OR because often it will be a different person. Make sure he or she is aware of the myotonia and has taken precautions.

You may be given magnesium and potassium in your IV after surgery. I have gotten quite severe myotonia from that, so ask them to use very low amounts. You should be okay with the painkillers, but there are a few antibiotics that might be an issue. We need to avoid any quinolones like Cipro and Levaquin as well as Augmentin because it is a potassium compound.

I would recommend a laparoscopic procedure rather than a large abdominal incision because our abdominal muscles are so affected by myotonia that the less they cut, the less the contractures to cause you pain afterward. I have a very large abdominal incision and it was tough when it was healing because coughing or bending, lifting, etc would set of the myotonia and having the incision made it a lot worse. It wasn't unbearable, but it was definitely unpleasant.

Probably the most uncomfortable part will be the carbon dioxide gas that is used to inflate the abdomen during the surgery. They can't remove it all when they're done, so the remaining pockets of gas work their way through the tissues and can lodge around the diaphragm and make you think something awful is wrong, but it eventually breaks up and disappears.

Since MC affects skeletal muscles and your stomach is a smooth muscle, it won't be a factor in the recovery other than the incisions.

Let me know how you do. I know it's a huge decision, but you're taking steps to improve your health and extend your life and I think you'll be happy with the results.

Jan




Type of Myotonia: Thomsen's

Country: US

Re: Having Bariatric Surgery, has anyone else had this done?

Thank you Jan, for the encouragement and the help.

Surgery was on Monday and it went well. The worst part of the recovery so far is that I have not been able to take mexiletine because it only comes in a capsule. When you have a gastric bypass you can not take capsules and/or tablets larger than a plain m&m for the next 3 months. I did find out that I can open the capsule and put it in food or drink but it is so nasty.
I am sticking to protein drinks that are low fat and low sugar, I had a bite of eggbeaters this morning and will be looking forward to some fat free cottage cheese for supper. It is however, difficult to find cottage cheese that does not have the potassium additives.

I will try to keep the forum posted as to the recovery in hopes to hel anyone else.

Thank you again,
Suzi

Type of Myotonia: unknown

Country: usa

Re: Having Bariatric Surgery, has anyone else had this done?

Suzi,

So glad everything went well! How was your experience with anesthesia and post-operative pain meds?

I used to buy the non-fat cottage cheese curds (in a bag) and put them through the food processor with some yogurt to avoid additives. You also might want to try some ricotta cheese, but still read the label since some brands might contain potassium sorbate.

They used to make Mexitil in ampules that could be used for IV administration. I'm not sure if that is still the case, but I'll try to find out in case others might need it for a few days after surgery.

V-8 is really good at disguising yukky tastes. If you do mix the powder from the capsule in food or drinks, be sure to take an antacid at the same time since you can't eat much food at once.

Please keep us posted and thanks so much for sharing!

Jan

Type of Myotonia: Thomsen's

Country: US

Re: Having Bariatric Surgery, has anyone else had this done?

Hi Suzi:

I have not had bariatric surgery though, when I was a teenager, I gained a significant amount of weight in a very short time due to some medication I was on, and then had to lose it. I am 5'4 and was up to about 234lbs (a lot of it was muscle but too much of it was fat).

My myotonia was very severe at the time, and I didn't think it could get worse, but it did for the few few months of my diet and exercise routine, especially after the gym. I kept up with it though because I was so determined to get the weight off, and at some point, the myotonia started to lessen, until it was less than when I had initially started. It took me about a year and a half to lose the weight on a 1200 calorie per day diet and 3-6 days per week at the gym. I started with 3, worked up to 6, and cut back to 5. By the time I was finished, I would say that on a scale from 0-10, with 0 being no myotonia and 10 being rigid paralysis, my myotonia had dropped from an average of 8 to an average of 4, meaning, I still couldn't immediately after standing, but I could drive, and trip without falling.

So if your myotonia does worsen over these next few months, try not to get discouraged. It might be a temporary thing....you should have the genetic testing though to determine what type of myotonia you actually have, as that might help you determine how hard to push yourself. I didn't know I had Becker MC at the time, but with Becker MC, it's very typical for the myotonia to be worse after resting (which could mean stopping and standing there for 3 seconds) after rigorous activity, and for it to lessen over time with regular exercise, so if you had Becker MC, I would say keep at it. But people with paramyotonia might need to not push themselves as hard.

Another thing. I've noticed that there is a common trait among people who have lost significant amounts of weight and kept it off. They switch goals. After they reach their goal weight, they are not done. They change their focus from losing weight, to becoming fit, and even athletic. I think this is particularly important for people with food addictions because pursuing a goal like running a 5k or a marathon, or even just beating personal bests helps refocus their attention from negative endorphin creating activities, to positive endorphin creating activities, and trust me, exercise does eventually start to feel good. I'm not sure if it was 3 months in or 6 months in, but I got to a point where I just couldn't see how I could not go the gym.



Type of Myotonia: Becker

Country: USA

Re: Having Bariatric Surgery, has anyone else had this done?

Jenna,
Thank you for your reply, and encouragement. I will keep in mind that it will get better. I am feeling better already having lost over 35lbs so far.
Thank you,
Suzi

Type of Myotonia: ?

Country: USA