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My Gastric Sleeve Nightmare.... I still haven't woken up!



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I am very sorry you are going through this as well.

I have to ask...do any of your problems have to do with your surgeon? Was your surgeon experienced? Did you research your surgeon to see if any malpractice claims had been filed? The reason I am asking is because i have been researching this for a LOOOOONNNGGG time and I haven't seen anyone to have the wide array of issues you are dealing with. Are the doctors telling you that all of those symptoms are complications from the surgery? Of course some of the symptoms are common like acid reflux and nausea.

Dealing with all of this would be very difficult.

Yes I over researched. She is supposed to be the best in Grand Rapids. I had no neurological issues before the surgery or any family history of nuro issues. So the surgery is thing at this point they can contribute it to. mayo Clinic did a study from 2007-2010 about Nuro issues after bariatric surgeries, but the doctors at University of Michigan told me they have never seen such widespread nerve damage.

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Are they considering an auto immune cause? The stress of surgery could have triggered an auto immune response.

I have also seen wide spread neuropathy with food allergies...I personally know someone who had very similar neuropathy symptoms and was diagnosed with a corn allergy. After eliminating corn she is much better.

So sorry you are having so many issues....but good luck pinpointing the cause

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The mayo clinic is where you want to go. I have a friend who has something called Dysautonomia. It is also rare and came seemingly out of the blue. She is not a bariatric patient. She has some of the muscular weakness and autoimmune issues you mention. This is well beyond my scope of knowledge but from all that I have heard, Mayo is the best place to find a solution.

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Are any other organs, aside from your stomach, in your body being affected?

We're any of your nerves accidentally damaged during the surgery?

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So very sorry you are having so much pain! My first thought is auto-immune disease too. If you cannot get to mayo, have you at least seen rheumatologist? That is who diagnosed my auto-immune disease (Graves Disease and ongoing monitoring for Lupus due to some certain markers shown in a blood test).

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Has your neurologist ordered an MRI of your complete spine to look for any discs that are pressing on nerves? Did you have any kind of accident (or fall) that would have compressed your spine?

The only reason that comes to mind is that I get similar neuropathies in my right leg, from hip to toe - including the drop foot - and it has nothing to do with my sleeve. I had steroid injections for a while, but my pain specialist moved on to a process called Radio Frequency Nerve Ablation.

What he does is basically using that process to "disconnect" that nerve from its compression point where L5 meets the sacrum. (L5-S1)

The procedure immediately stops the pain because my brain does not receive that signal. It does not affect any motor nerves, requires no incision, and lasts from three months to two years, depending on how fast the nerve grows back.

According to their website, the mayo Clinic uses this process in a number of applications. It certainly is worth asking about, because if they cannot find what suddenly activated the chronic pain, they can at least give you some relief from it.

I wish you the best and am looking forward to hearing that your medical team has found a resolution for you. Hugs from Chicago.

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I don't have any advice to offer but I hope you find a solution and feel better soon.

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I am so sorry to hear of all this and hope you find help and improvements soon!

I have never heard of this situation related to WLS, but you lost alot of weight really fast. I lost 150# in 14 months which for a woman, was considered fast by my surgeon. You lost even more/faster. I don't know what to believe, but my previous primary care doc didn't think standard blood tests show deficiencies accurately. I did this"extra" special nutrient analysis via Spectracell which came back very very good in my case. Given your history of B Vitamin issues and the B Vitamins relationship to neurological issues...perhaps this should be pursued further?

I am hoping you get some answers, please update us.

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Has your neurologist ordered an MRI of your complete spine to look for any discs that are pressing on nerves? Did you have any kind of accident (or fall) that would have compressed your spine?

The only reason that comes to mind is that I get similar neuropathies in my right leg, from hip to toe - including the drop foot - and it has nothing to do with my sleeve. I had steroid injections for a while, but my pain specialist moved on to a process called Radio Frequency Nerve Ablation.

What he does is basically using that process to "disconnect" that nerve from its compression point where L5 meets the sacrum. (L5-S1)

The procedure immediately stops the pain because my brain does not receive that signal. It does not affect any motor nerves, requires no incision, and lasts from three months to two years, depending on how fast the nerve grows back.

According to their website, the mayo Clinic uses this process in a number of applications. It certainly is worth asking about, because if they cannot find what suddenly activated the chronic pain, they can at least give you some relief from it.

I wish you the best and am looking forward to hearing that your medical team has found a resolution for you. Hugs from Chicago.

Was going to suggest the same thing. I just had my second spinal fusion due to most of these symptoms. I know it may have coincided with your surgery but who knows. Maybe you had a bulging disc before surgery and then without them know being intubated could have completely herniated it. I wouldn't disregard your spine at all.

Edited by kdelrosso

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Have they checked you for lead, mercury, and other toxic metals? Several can cause most if not all of the symptoms you mentioned. Exposure to toxins is my professional area of expertise so that's why your symptoms sound so suspicious.

It's admittedly unlikely, but not impossible; for example Consumerlabs.com has found lead contamination in many Calcium supplements, and heavy metals in some Protein drinks.

You may want to ask your dr to run a heavy metals panel just to rule this out for sure. NOT some hokey test of your hair or nails -- a real blood test by a real MD (for example the correct test for lead is a ZPP or zinc protoporphyrin test).

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    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. LeighaTR

        I hope your surgery on Wednesday goes well. You will be able to do all sorts of new things as you find your new normal after surgery. I don't know this from experience yet, but I am seeing a lot of positive things from people who have had it done. Best of luck!

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
      · 0 replies
      1. This update has no replies.
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