help a scared newbie

So last week I was cleared by my surgeon, with a tentative date for early November, as long as insurance approves. And I am scared witless at this point.

The past two months have been really awful and I do not feel at all mentally prepared. After doing one of my many presurgery tests, an arterial blood gas, I passed out cold--never happened before. I woke up the next day horribly sick (fatigue, muscle twitches, muscle pain, nausea, lightheaded, dizzy)--and have been sick ever since. I've seen every specialist I can imagine, taken thousands of dollars of tests and MRIs and so on, with no diagnosis. One tentative possibility is fibromyalgia, which is causing occasional panic attacks, but that doesn't fit all of the symptoms either. While it's gotten a little better in the past 2 months, I am still very fatigued and some days so lightheaded/spacey that I often cannot drive. I have to work from home and I have not returned to working from my office since the incident. At this point, most of the doctors I've seen think "it's all in my head" or "it's just panic attacks" and I've not been taken seriously by anyone.

Consequently, instead of spending the last few months mentally gearing up for a big change I've been completely focused on my Mystery Illness. I've lost a few pounds, primarily because I've been too tired / sick to eat, but otherwise I've not been doing any of the changes recommended pre surgery except increasing my water intake.

I just do not know what to do at this point. My surgeon--who is only somewhat informed on my horrendous 2 months-- feels I should do the surgery, as it will help my possible fibromyalgia and "clearly I need to be focused on my health right now more than ever." I've also managed to spend my entire OOP limit on insurance this year, so the surgery will essentially be free. But I'm scared. I don't know what happened to me after the fainting spell, and I worry surgery (and how taxing it is on the body) will make my fatigue worse. I'm reading here about people suffering lots of pain after surgery, weeks of nausea, people who do everything 'right' and don't lose much weight. Frankly, it terrifies me. I'm also shocked that my work has been so understanding of my illness and allowed me to work from home (instead of forcing me to take STD) and I can't imagine the reaction when I need even MORE time off in November.

I need some words of advice here...part of me thinks yes, do it, I am already essentially incapacitated, and perhaps the weight loss will help my Mystery Illness. Also, I can only afford to do it this year--I'll be paying off my existing medical bills for the next couple of years. The other part of me is terrified to do surgery when I don't know WHAT is causing my unrelenting fatigue and dizziness.

Replies

ThinGwen

Do you trust your general practitioner? I would talk to them, and get their opinion.

ThinGwen

Also, you should make sure your surgeon knows all the symptoms. Write them a letter, with all the details, including the test results. Go ahead and schedule - you can cancel anytime before you are wheeled in. Finally, have a talk with HR at work and your boss, so that the surgery doesn't blind side them. I took one week off, and started working from home on the second week, but was very tired. By two weeks out, I was fine. I had sleeve, and no underlying conditions (other than being 43 and obese). I think my recovery was on the easy side.

klcovington

I agree with ThinGwen in that you really need to sit down and write out these medical issues and discuss them thoroughly with your GP and surgeon. Any surgery will take a toll on your body --- both physically and mentally and this additional stress may cause you not to get optimal results. I was sleeved and took off about five days and then worked from home for another week. I was not in any pain and could walk the following morning after surgery but I was extremely nauseous and nothing really helped with that for the first 72 hours. In the meantime, research all you can about your surgery choice...I did and it really helped me be prepared for what was to come. That helped with my anxiety level. I really looked at the "Best Case" and "Worst Case" scenarios --- figuring I would fall somewhere in between. Best wishes!

martabeerich

I would take any doctor to task who says "it's all in your head." Just because they can't diagnose the issue does not mean you are fabricating an illness. Have you been checked for Lyme disease? MS? Even fibromyalgia? Have you seem a neurologist?

As for the surgery, honestly, you may have a tough week or two, but I agree that in the long run, you'll be healthier if you do it. Do you have someone you trust who can help advocate for you? My first 2-3 days I was terribly nauseous. I was so thankful my husband was there to be the responsible adult while I felt bad. Two months later I feel great.

Best of luck!

pawoodhull

I agree with ThinGwen, schedule it but make your bariatric surgeon aware of it all and then consult with your GP or PCP if you like and trust him/her. If your regular doctor or the bariatric surgeon think you should postpone then do it. And her advice about HR and your boss are right on too.

I had the sleeve 4 years ago. I was out two weeks. I had no need of pain meds after the second day and other than being tired, which is normal for any surgery, I had no issues with recovery. I had minimal issues with eating or drinking, but then I tended to stick to the bottom of the amount limits because the few times I overfilled my stomach were very unpleasant. Frankly coming back from this surgery was way easier than coming back from gall bladder removal.

One more thing, and not because I want to scare you, but have you asked anyone about you having maybe had a small or mini stroke? The continued light headedness, dizziness and fatigue make me wonder about that.

Briardlady

Not everyone has a rough recovery. I had a scopalamine patch before surgery, nausea meds and a mild painkiller while in the hospital, and that was it. No nausea, never a problem drinking fluids, meet my protein and water goals from day two. I'm not saying you will have the same, yours could be rough, but many of us do have it smooth.

That said, being mentally prepared is a huge part of this surgery, I think more than the physical part. I would take the suggestions above, but if you are still not mentally ready, don't do it.

Autum1031

Thank you for the words of advice. My PCP is intimately aware of what's going on, I've probably seen her 5-6 times since this weird illness began. I've seen a neurologist (two different ones), a cardiologist, a rheumatologist, a psychologist, an ear nose throat (rule out inner ear infection) doc, and today an endocrinologist. I've been tested for Lyme, MS, various disorders, had multiple MRIs, a full cardio workup, and more blood tests than I can count. Everything has come back negative/ normal, with the exception of a known Vitamin D deficiency that I'm being treated for. The current thought is that I have fibromyalgia, but I'm having difficulty getting treated as I keep getting conflicting advice from the various doctors. (Current issue: rheumatologist says the preferred fibro drug has a serious interaction with my existing migraine meds. Primary doc claims it does not. Neither are willing to change my migraine med, and want me to see "my" neurologist, a guy I've seen exactly once and who knows nothing of my medical history). It's been a really awful ordeal.

The bariatric surgeon is aware to the point of knowing I've seen a ton of specialists and had a battery of tests, but she is not as intimately aware of the trials and tribulations as my PCP. She thinks I should do it, but that it's up to me if I feel ready for it.

I've done an exhausting amount of research on this surgery, and have attended multiple support groups. And for every "I feel great!" story I read a, "I have complications six months later" story. So it's been tough.

PaulaKro

I have AFib (an irregular heart beat) which can be triggered by stress. For many years they told me it was just a panic attack and to just relax. Then it happened while I was in a doctor's office and she sent me for an EKG and they diagnosed it correctly. It can be exhausting if it goes on.

Don't know if that's what you have - it sounds different. But don't settle for "all in your head" - if they think it may be a panic attack, then it may be Afib. That's what it feels like.

Best!!!