Disabling symptoms since distal bicep repair surgery. Any suggestions?

Hi @stevetaylor721. You had me at Coach! I come from a very sports minded family, and have a coaching husband. Many props to anyone who coaches (if that is indeed what your title stands for).

I'm Rachel, welcome to Connect. I combed back through your posts to get caught up and was sorry to see you still do not have any solid reasons for your health disturbances since having bicep surgery. It's awesome however that your bicep was repaired successfully.

You've had great support and advice here on Connect which is why it's such a wonderful community. I'd like to throw you a curve ball with a little something different. If you feel up to it, do you mind watching a video presentation that I've attached on Central Sensitization Syndrome (CSS)?

CSS is an upregulation of the central nervous system and sensory input system. CSS can be upregulated by traumatic events, surgeries, you can be born with it. It's tough to pin point as there are no tests to prove, just process of elimination.
https://www.youtube.com/watch?v=8defN4iIbho
As you continue your search for answers, and visit Iowa City Hospital in three weeks, take a look at this video presentation from Dr. Sletten of the Mayo Clinic, and keep it in your back pocket in case nothing else seems to make sense.

I'm wishing you continued perseverance and hopefulness in your journey. You sound like you know how to stay positive, and that's what it takes sometimes, despite being tested.

I'll be curious to know your thoughts on the CSS video. Do you mind getting back to me?

That is tragic. I'm so sorry for that. I wish Mayo would reach out again and decide that a year in hell is too long for you.

Thank you Rachel, I appreciate the reply and information! I am in fact a coach and have been a wrestling and football coach for years. I did watch the video and found it very interesting. I can see how the process of CSS would influence receptors to “trick” the body into thinking something is wrong. I will certainly keep that info in my back pocket as I go through the discovery process (well hopefully there is some discovery) and try to find solutions to my issues. I truly don’t feel that CSS is my issue but of course I would defer to smarter folks than me to figure it all out. My symptoms have morphed a bit in the past week and I am now getting tremors in the morning with a pounding headache, tinnitus (pulsing with heartbeat in left ear, ringing in both) and waves of nausea/dizziness/disconnected feelings through the day and night. I’m still quite restless and have been unable to sit and watch TV, read a book or do much of anything other than pace and walk all day. I do realize how odd this all sounds and my primary is equally perplexed. He’s run a lot of tests for autoimmunity and inflammation, but the only test that has come back concerning were a high complement total. Based on that and my rather extreme rapid weight loss he ordered an abdominal CT scan which came back clean other than the bladder wall thickening and diverticulosis. I am hoping I can get some answers soon as I am truly out of steam and running out of hope. I am not very smart with medical issues and would prefer to leave that stuff to the pros, but someone I know suggested csf pressure as a possibility. I truly have no idea…. Thanks again for the reply and information! It is helping me keep my sanity to have good people like you reply with information that I can mention to my primary.

Thank you! My wife has been keeping a daily journal of my symptoms since this has started right after the surgery. I am hoping to get this figured out soon so I can get back to work. It has been frustrating for sure, and as I type this I am having a really rough morning which makes me a bit more pessimistic, but I am terribly worried that the doctors are not going to find the cause and I will have to trudge on like this for as long as I can until I develop symptoms that point to an obvious cause or I just run out of time. It’s frustrating…. Thanks for taking the time to respond and for your kindness!

Your wife sounds like a keeper!

Tha k you so much for asking. I am still plugging along but haven’t had any real improvements. I am still unable to go to work or do much except try to get through each minute of each day. I’ve had a lot of labs and testing done which has not pinpointed anything specific, unfortunately. I was able to get referred to Iowa City hospitals in 3 weeks, so I’m just trying to hold on until then and hope I get lucky and they find something tangible

@stevetaylor721-Hi. I have read through your thread, as the title caught my attention. What you describe, I experienced the same thing after a “minor” elective surgery.
-My profile was completely healthy 100%.
Active in every area of life. Zero health issues. Exercised daily. Ate very healthy. Slept 8 hours a night. Healthy community and family support.

-First-I want to point out the positives for you. It sounds like the surgical site is healing well and you are healthy there. And you also have a great support system.

-I will share with you what I have learned along the way, in hopes it could shed some light or address something that hasn’t been addressed.

-About 2 days after surgery I could not sleep more than 2 hours. Shaking, trembling, could not regulate body temperature. Weight loss despite eating. Severe rushes of cortisol/adrenaline all day.
Saw every type of doctor, had every type of test.

-I too was referred to a Psychiatrist after many doctor visits and tests. This psychiatrist explained to me how anesthesia works and how the body processes surgery as a trauma response. Anesthesia can alter people’s brain activity afterwards. The brain can also get stuck in a protection mode “fight or flight”, when you are no longer in danger.
Many people think anesthesia just “puts you to sleep”. It does so much more than that and acts on all different neurotransmitters in the brain. Each persons pathways are different. So it is not known how each persons brain will accept/respond to the affects. All of these alterations affect the Central Nervous System. It was explained to me as the brain gets turned off like a power grid. When you come out of anesthesia the grid comes back on in different areas and starts reconnecting. If the synapses don’t connect and start firing together these neurotransmitters together, that’s when the altered state can remain. Causing severe anxiety/panic. This then causes all kinds of real physical symptoms. Such as the sleep loss, nausea, vomiting, muscular tightness, trembling, weight loss etc...

-Anxiety/Panic is not just a response from external stimuli and thoughts. It can absolutely happen systemically from within as neurotransmitters from a systemic response and literally make you physically sick. As the lack of sleep continues, this continues the cycle as the brain can only recover with proper restorative sleep. This is why many of the first questions at appointments will be “hows your sleep?”. Without that, nothing can happen.

-At this time you would have to address brain health to balance the Central Nervous System. and many people are out of touch with that.

-Find someone who will explain to you the circadian rhythm/sleep cycle which is run by these neurotransmitters. The rushes you feel immediately in the morning-similar to that of dropping from a swing- are most likely bursts of cortisol/adrenaline. We all wake with a tiny release of this. This hormone is what actually wakes us. Rushes of it at once are not supposed to happen.

-I would recommend working with a Functional Medicine Doctor, one whom understands this as a common occurrence.
A Neurologist, whom understands, brain activity and neurotransmitter firing.
A psychiatrist whom understands and has worked with altered states to due anesthesia and how to help the mental part that this can put a person in.

-Neurotransmitters run the body. They are heavily connected to the gut. Which is why there is a name, “The Gut-Brain Axis”. Both continuously talk to one another. Some people after drugs/anesthesia have nausea and vomiting, this is a response.

-I want to reiterate these are just suggestions. As what you have shared is not rare. It is just not talked about or acknowledged. Anesthesiologists main job is to keep you out of pain and in a coma like state. So long as the surgery went well and they kept you alive, then it is considered uneventful and a successful surgery. To this day, they aren’t fully aware of the mechanism of action on the brain, as every person is so different.

-When the doctors brush you off and tell you it’s “anxiety”, they are doing you a disservice, because many people think of anxiety in a non chemical/systemic way and only with having anxious thoughts. This leaves a patient to think they are creating it. You are not. It is absolutely a chemical/systemic response.

- I will add an article that you can review.
You can bring this up to the providers that you are currently working with or new ones.
It would have to be a provider who completely understands the body as a whole.

-In the mean time, there are things you can do to help restore your nervous system.
A Functional Medicine Doctor can help you with that as well. Or have your wife look into somethings for you.

Focus on brain healing foods, that boost the neurotransmitters, not just calories. But good proteins, vegetables, and high vitamins/minerals. Anything that can promote relaxation and sleep. Keep moving and walking. Try for restorative stretching that can help your nervous system response.

*again-these are just thoughts or suggestions. By no means telling you, you have a certain condition.

If you have anymore questions, please let me know.
https://www.google.com/amp/s/www.the-scientist.com/features/general-anesthesia-causes-telltale-brain-activity-patterns-65501/amp

@stevetaylor721-Hi. I have read through your thread, as the title caught my attention. What you describe, I experienced the same thing after a “minor” elective surgery.
-My profile was completely healthy 100%.
Active in every area of life. Zero health issues. Exercised daily. Ate very healthy. Slept 8 hours a night. Healthy community and family support.

-First-I want to point out the positives for you. It sounds like the surgical site is healing well and you are healthy there. And you also have a great support system.

-I will share with you what I have learned along the way, in hopes it could shed some light or address something that hasn’t been addressed.

-About 2 days after surgery I could not sleep more than 2 hours. Shaking, trembling, could not regulate body temperature. Weight loss despite eating. Severe rushes of cortisol/adrenaline all day.
Saw every type of doctor, had every type of test.

-I too was referred to a Psychiatrist after many doctor visits and tests. This psychiatrist explained to me how anesthesia works and how the body processes surgery as a trauma response. Anesthesia can alter people’s brain activity afterwards. The brain can also get stuck in a protection mode “fight or flight”, when you are no longer in danger.
Many people think anesthesia just “puts you to sleep”. It does so much more than that and acts on all different neurotransmitters in the brain. Each persons pathways are different. So it is not known how each persons brain will accept/respond to the affects. All of these alterations affect the Central Nervous System. It was explained to me as the brain gets turned off like a power grid. When you come out of anesthesia the grid comes back on in different areas and starts reconnecting. If the synapses don’t connect and start firing together these neurotransmitters together, that’s when the altered state can remain. Causing severe anxiety/panic. This then causes all kinds of real physical symptoms. Such as the sleep loss, nausea, vomiting, muscular tightness, trembling, weight loss etc...

-Anxiety/Panic is not just a response from external stimuli and thoughts. It can absolutely happen systemically from within as neurotransmitters from a systemic response and literally make you physically sick. As the lack of sleep continues, this continues the cycle as the brain can only recover with proper restorative sleep. This is why many of the first questions at appointments will be “hows your sleep?”. Without that, nothing can happen.

-At this time you would have to address brain health to balance the Central Nervous System. and many people are out of touch with that.

-Find someone who will explain to you the circadian rhythm/sleep cycle which is run by these neurotransmitters. The rushes you feel immediately in the morning-similar to that of dropping from a swing- are most likely bursts of cortisol/adrenaline. We all wake with a tiny release of this. This hormone is what actually wakes us. Rushes of it at once are not supposed to happen.

-I would recommend working with a Functional Medicine Doctor, one whom understands this as a common occurrence.
A Neurologist, whom understands, brain activity and neurotransmitter firing.
A psychiatrist whom understands and has worked with altered states to due anesthesia and how to help the mental part that this can put a person in.

-Neurotransmitters run the body. They are heavily connected to the gut. Which is why there is a name, “The Gut-Brain Axis”. Both continuously talk to one another. Some people after drugs/anesthesia have nausea and vomiting, this is a response.

-I want to reiterate these are just suggestions. As what you have shared is not rare. It is just not talked about or acknowledged. Anesthesiologists main job is to keep you out of pain and in a coma like state. So long as the surgery went well and they kept you alive, then it is considered uneventful and a successful surgery. To this day, they aren’t fully aware of the mechanism of action on the brain, as every person is so different.

-When the doctors brush you off and tell you it’s “anxiety”, they are doing you a disservice, because many people think of anxiety in a non chemical/systemic way and only with having anxious thoughts. This leaves a patient to think they are creating it. You are not. It is absolutely a chemical/systemic response.

- I will add an article that you can review.
You can bring this up to the providers that you are currently working with or new ones.
It would have to be a provider who completely understands the body as a whole.

-In the mean time, there are things you can do to help restore your nervous system.
A Functional Medicine Doctor can help you with that as well. Or have your wife look into somethings for you.

Focus on brain healing foods, that boost the neurotransmitters, not just calories. But good proteins, vegetables, and high vitamins/minerals. Anything that can promote relaxation and sleep. Keep moving and walking. Try for restorative stretching that can help your nervous system response.

*again-these are just thoughts or suggestions. By no means telling you, you have a certain condition.

If you have anymore questions, please let me know.
https://www.google.com/amp/s/www.the-scientist.com/features/general-anesthesia-causes-telltale-brain-activity-patterns-65501/amp