Disabling symptoms since distal bicep repair surgery. Any suggestions?

Posted by CoachT @stevetaylor721, Sep 5, 2021

Hello everyone, I have had some very debilitating symptoms for the past 6 weeks since undergoing a distal bicep repair surgery and desperately need your help. Prior to the surgery I was an active, pretty healthy 48 year old. The surgery was conducted under general anesthesia in which I was put on a ventilator. All indications are the surgery went well. I wasn’t worried about the surgery in the least, and had debated even getting it repaired as it didn’t hurt and wasn’t impacting my golf game. However, a day and a half after the surgery I got a very strange feeling that led to what I believed was a panic attack (I have no history of anxiety/panic so I wasn’t sure). Long story short after 5 hours of debilitating symptoms my wife drug me to the ER. Over the next week the symptoms never left and I had two more ER visits. For the first week and a half I never managed more than 2 hours of sleep a night due to the symptoms. For the past 6 weeks it has been a daily occurrence with only a short break in symptoms here and there. The best way to describe the symptoms is a rush of something akin to intense anxiety/panic that makes me feel sick and often leads to vomiting (especially early morning). However, my heart rate actually has plummeted into the low 50s over the past 6 weeks and never gets over about 62 even during the worst of the attacks. I bought an iWatch to monitor my heart rate and it is always low. I have lost 35 pounds in 6 weeks despite eating, and eating pretty normally the past week. I also get why I can beat describe as an altered state of consciousness, disorientation that comes and goes. I’ve tested negative for pheochromocytoma and even underwent a psychiatric evaluation which was completely normal. The psychiatrist even asked why someone would send me there as this was clearly a medical issue. Simply put, none of this is thought driven and I do not feel anxiety has anything to do with it. I’ve undergone extensive blood work which hasn’t shown cause, and the doctors are baffled. The endocrinologist I saw was sufficiently alarmed to refer me to Mayo, but my referral was rejected. At this point I can’t work, can barely function and am in a constant state of misery. Trazodone helps me get about 5 hours of sleep but I wake up at 4am and the symptoms start immediately. Any suggestions that I can take to my doctor would be so much appreciated!

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@jenniferhunter

@stevetaylor721 Another suggestion I could make is to soak in an Epson salt bath. Most people are deficient in magnesium, and you will absorb that through your skin in the bath. Magnesium also helps you relax and it is needed for detoxification. If you are not able to sit in a bath, I have seen a lotion that contains epsom salts, and there are magnesium supplements. It takes about 20 minutes to absorb enough in the bath. This was a recommendation from my functional medicine doctor. I like doing this myself as I feel so much better afterward.

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Thank you! I appreciate the suggestions and am willing to try anything that brings any amount of relief. I’ll give it a shot!

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@colleenyoung

Hi CoachT, I thought I would jump in here for a minute too. You've been getting great support and coaching from @jenniferhunter so I don't have much to add. But you're used to being the coach, not needing coaching, right? I sure hope you can get answers soon so you can get back to golf and coaching your kids teams and the things that bring you joy.

Good for you for pursuing the recommendation of seeing a psychiatrist even though you were quite sure it wasn't an anxiety-related issue. It's good to have it ruled out for the record and for future physician consults to not dismiss the issue as a mental health issue. Mental health is just as important as physical health. Reading the complexity of the situation, I'm sorry to hear that you weren't able to get an appointment at Mayo Clinic. Currently we are experiencing high volumes of requests and seeing record numbers of patients. It may just be a situation of volume and capacity. You could try again at a different location. Or, as Jennifer suggested, consider another larger learning medical institution that treat patients with a multidisciplinary team.

My mom is also extremely sensitive to drugs. General anesthesia is really tough on her. She has relatively simple bilateral bunion surgery a few years ago and the recovery from the anesthesia was more challenging that the surgery itself.

Are you still averaging 23,000 steps a day now? That is a ton!

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Thank you, I appreciate the info. I am going to ask my primary about getting referred to iowa city as that is an easy drive for me. I am still walking over 20k steps a day and felt good enough this morning to even go for a run. It was a really good morning and early afternoon and I thought I may have turned the corner but then like a switch got flipped I started getting dizziness, nausea and vomiting this afternoon that has persisted through the evening. It is very frustrating and it makes it difficult to plan anything or go to work, much less enjoy life at the moment. Hopefully the good morning is a sign that things are improving though. I have to look at it with optimism. I do truly appreciate the feedback and input!

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@dianecostella

50mg of Trazadone helps my sleep tremendously. It a very low dose no where’s near it to be a sufficient antidepressant. A lot of doctor’s prefer Trazadone to sleeping pills. It’s non-narcotic, it supposedly not addictive and it’s a low dose so no hangover effect the next day. I am no means an expert and this is my perspective. You need to do you and decide what medication is a fit for you.
I will say I had surgery on June 29th and I am still not fully recovered. I am trying to think positively but I have had a rough ride and I am hoping I can past this hurdle.

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I am sorry to hear about your struggles after surgery. I upped my dose to 50mg last night and got 4:40hr of sleep. Was hoping for a bit more but it’s still much better than it was early on. I hope you recover soon. My arm is doing quite well it is these other issues that are beating me down. I just want to get back to being my old self mentally. Hopefully you make a full recovery and get back on your feet soon! Thanks for the response!

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@jenniferhunter

@stevetaylor721 Steve, I was also thinking about melatonin. That is the substance your body makes that induces sleep. I was wondering if this could be an alternative to the antidepressant you are taking, and you may want to ask your doctor about this. It is an over the counter supplement. With all the serious side effects of the Trazodone, it might be a safer alternative if it works for you. It looks like melatonin helps with anxiety and blood pressure too. I pulled up this information about it. https://www.webmd.com/vitamins/ai/ingredientmono-940/melatonin

Also, light, and blue light from cell phones and computer screens interferes with our bodies making melatonin. I always try to turn off the computer at least 2 hours before I go to bed, otherwise, I lay awake for 2 hours. I did take an epsom salt bath last night after mentioning it to you, and it did make me sleepy. I am not tempted to look at a cell phone if I can't sleep. Actually my cell phone is a boring flip phone anyway, but I will put on my headphones and listen to relaxing music and hope that my cats will settle down. Speaking of cats, last night one of my kitties jumped into the tub with me to discover that the water was a bit deeper than he thought it was, so I helped him out and then there was a wet cat loose in my room and on the bed licking off the water.

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Thanks Jennifer, I did try melatonin and unfortunately it didn’t help my issues. I also was prescribed Hydroxine and Xanax, but neither did a thing but make me groggy. The symptoms were still all there and I would still wake shortly after falling asleep with the jolts. I agree on the sleep hygiene and I have been trying to do exactly that, along with getting to bed earlier. Thanks again for taking the time to offer suggestions and information. This has been a life-altering experience for me and I have been struggling to get a diagnosis, help, solutions etc. I really appreciate you taking the time to offer good ideas and paths forward.

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@stevetaylor721

Thank you, I appreciate the info. I am going to ask my primary about getting referred to iowa city as that is an easy drive for me. I am still walking over 20k steps a day and felt good enough this morning to even go for a run. It was a really good morning and early afternoon and I thought I may have turned the corner but then like a switch got flipped I started getting dizziness, nausea and vomiting this afternoon that has persisted through the evening. It is very frustrating and it makes it difficult to plan anything or go to work, much less enjoy life at the moment. Hopefully the good morning is a sign that things are improving though. I have to look at it with optimism. I do truly appreciate the feedback and input!

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Hi Steve. Reading this account makes me think of when I was getting dizzy because of my spine issues. Do you have any cervical spine issues? I was wondering if you may be experiencing vertigo? I am a spine surgery patient and my C1 & C2 would independently rotate that would suddenly bring on the dizziness if I looked upward when my vertebrae were rotated. It sounds like you are ok for awhile while you are running. Are you getting neck pain or muscle spasms? That would be something you could ask your physical therapist about and if there is a specific back muscle that is spasming. Since my spine surgery, everything has stabilized so this doesn't happen anymore, but I actually fell over once when it hit hard. Your PT can feel your neck to see if it is aligned correctly.

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I am so sorry you are going through this. Some of your symptoms sound like maybe something happened to your autonomic nervous system while under anesthesia perhaps? Also, have you been checked for an infection? Not just at the surgical site but possibly somewhere else in your body? Hopefully you find answers and relief soon. I wish you well!

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@sjv1968

I am so sorry you are going through this. Some of your symptoms sound like maybe something happened to your autonomic nervous system while under anesthesia perhaps? Also, have you been checked for an infection? Not just at the surgical site but possibly somewhere else in your body? Hopefully you find answers and relief soon. I wish you well!

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Thank you so much! I have had the same thought about ANS and I do think that is what happened with one or a combo of the drugs I was given, as does the psychiatrist I went to see. But I haven’t been able to get any kind of testing to confirm or rule it out. It has been a painfully slow process and I’ve had to fight every day to get into doctors. I did have CBC, see rate and c reactive protein blood tests done, along with a urine test to look for bladder infection. All showed no inflammation and no bladder infection. I have not had any further diagnostics done for specific infections, etc. thanks again for your response !

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@jenniferhunter

Hi Steve. Reading this account makes me think of when I was getting dizzy because of my spine issues. Do you have any cervical spine issues? I was wondering if you may be experiencing vertigo? I am a spine surgery patient and my C1 & C2 would independently rotate that would suddenly bring on the dizziness if I looked upward when my vertebrae were rotated. It sounds like you are ok for awhile while you are running. Are you getting neck pain or muscle spasms? That would be something you could ask your physical therapist about and if there is a specific back muscle that is spasming. Since my spine surgery, everything has stabilized so this doesn't happen anymore, but I actually fell over once when it hit hard. Your PT can feel your neck to see if it is aligned correctly.

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Thanks Jennifer. I do have some cervical spinal issues due to a past sports injury that certainly contribute to the poor balance and dizziness. I’ve had that for many years but it has definitely gotten much worse since the surgery. It also feels a bit different since the surgery. A different kind of dizziness if that makes sense?

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@stevetaylor721

Thanks Jennifer. I do have some cervical spinal issues due to a past sports injury that certainly contribute to the poor balance and dizziness. I’ve had that for many years but it has definitely gotten much worse since the surgery. It also feels a bit different since the surgery. A different kind of dizziness if that makes sense?

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@stevetaylor721 For me, vertigo had a component of movement, like the world was starting to spin around me. It is the way things look and feel if you had spun yourself around like a kid who was playing a game. The reason it was happening is because having a twisted or tilted vertebrae will stretch the vertebral artery that runs through the sides of the vertebrae. That affects blood flow to the brain. When you have a neck spasm or a spasm in the shoulder blade area, all that pulls on the spinous process of the cervical vertebrae and can move them. I would have to walk with my hand against the wall when this was happening, and other times, I just had to lie down with a heated wrap around my neck to help the muscles relax. Does this seem like the symptoms you are having?

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@stevetaylor721

Thanks Jennifer, I did try melatonin and unfortunately it didn’t help my issues. I also was prescribed Hydroxine and Xanax, but neither did a thing but make me groggy. The symptoms were still all there and I would still wake shortly after falling asleep with the jolts. I agree on the sleep hygiene and I have been trying to do exactly that, along with getting to bed earlier. Thanks again for taking the time to offer suggestions and information. This has been a life-altering experience for me and I have been struggling to get a diagnosis, help, solutions etc. I really appreciate you taking the time to offer good ideas and paths forward.

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Maybe Graves Disease triggered by the surgery?

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