After Surgery Complication: Faitigue nose ear and throat problems

Posted by nicoleen1973 @nicoleen1973, Dec 21, 2020

7 months ago i had a back operation. Myy lung collapsed, got anemia and a bloodclot in the heart. The moment i came from theatre i told them i struggled to breath. Its now 4 months later. I still have an extreme faitigue. So bad rhat its difficult to go to the bathroom. My nose is constantly blocked or running or burning especially in the back. It drains the whole time into my throat that it feels like my lungs. I cough the whole time. I just coughed phlem out and now theres more. I had all the heart and lung tests and ct scans. Everything is normal. Just my heart rate goes a bit high. Im dizzy get headaches my left ear or both goes blocked the whole time. My teeth hurts now and again and my throat is sore. But i dont have swollen eyes or sore cheekbones. My doctors said its anxiety or chronic fatigue syndrome. Im so tired and dont know what to do

@nicoleen1973 Welcome to Mayo Clinic Connect. You recently had back surgery with complications. Since the surgery you have had numerous symptoms but all of your tests come back "normal."

You'll notice I added your discussion to the Depression & Anxiety and Spine Health groups . I did this so you connect with more members that may be able to help answer your question.

You will also notice I changed your title to better reflect your question. I did this so you could connect with members like @alaethia @nrd1@johnbishop @healthhopefreedom @gingerw @jenniferhunter @catcr505 @ess77 @merpreb @lyonsbrew that may be able to help answer your question or give you next step suggestions.

There are programs that handle anxiety and chronic fatigue syndrome, such as a pain clinic but it's important to rule out an organic issue first. I know your providers have done this already but I'm wondering if you have considered getting a second opinion at a more specialized medical facility?

REPLY

I have a couple of thoughts:
Anemia: You might have the specific test to verify the level of your anemia, and if you would benefit from an iron infusion, and or a series of ARANESP shots.
Sinus: It seems that you need to solve this issue with advice from an ENT. Using a saline solution in some form to clear your sinuses on a regular basis would likely help; there are multiple delivery vehicles such as the netti-pot, or bottle; I prefer the aerosol spray, but it runs a bit high in cost.
Immunologist: You might want to be checked for allergies.
Sore throat: The ENT will check for GERD.

Good luck

REPLY

If it is chronic fatigue I believe they can run some blood tests called a metabolic panel.

REPLY

By chance have you been tested for COVID-19 just to rule that out?

REPLY
@marjou

By chance have you been tested for COVID-19 just to rule that out?

Jump to this post

Yes 8 times and once for antibodies

REPLY

Hello, nicoleen1973. You've really been through a tough time. I wonder if you've considered visiting some medical center like Mayo Clinic or Cleveland or one of the large teaching hospital/clinics? I am blessed to live in Florida and get to Mayo Jacksonvillle easily. I go there now for all my medical needs. I've found it is a wonderful solution for me. I have a host of unusual and sometimes hard to diagnose illnesses that have driven me and the community doctors nuts for years. I finally, last year, had a serious conversation with myself and dedicated myself to finding solutions. I took control, sort of, at least in my head, of getting the best help and some true answers/treatment. So, Mayo doctors are now mine. And, they have undiagnosed wrong diseases & treatment, tested and found the legitimate answers and now we're on a path of solutions, logical treatment and much better quality of life and health. I highly recommend finding the right place for you to get this kind of care, from docs and staff who work TOGETHER with you and with each other….yes, they actually chat w/each other about your problems and work as your team to solve them. Do you live near anything that comes close to offering this? Blessings and look forward to chatting…Elizabeth

REPLY

This may have already occurred for you, but have you had autonomic reflect testing for POTS (Postural Orthostatic Tachycardia Syndrome). It sounds like you could be experiencing some similar symptoms.

Also, I know that when Doctors "don't know" the answer, or it's not generally something they have come across before, they tend to chalk it up to CFS or Anxiety and that makes me unnerved. I can't believe with all the resources, they can't come up with something different.

I really hope that you get down to the bottom of it and we're here for you through the process!

REPLY

Have you seen a pulmonologist? Sure sounds like something is “off” respiratory wise.

REPLY

@nicoleen1973 By your use of "theatre" I think you might be in the UK or a British colony? You're tired, and tired of not finding an answer to your continued problems.

In reading your post, it almost seems like there is an infection somewhere. Have any blood tests been run to check for that? A possibility, you were allergic or adversely reacted to something during surgery? If you have the fatigue and difficulty breathing, you are trying to get good oxygen flow in, and your heart is working harder to get nutrients to keep you going with oxygen circulating. It's difficult to even think of eating, let alone eating to get healthy, isn't it?

If you are near a large teaching hospital or a Mayo Clinic campus, that might be your best bet. Your post sounds like the doctors are not communicating with each other. If you are on any medications, that may need to addressed, also. If it was me, I would be looking for a good pulmonologist and internist. Hoping this has given you some ideas,
Ginger

REPLY
@healthhopefreedom

This may have already occurred for you, but have you had autonomic reflect testing for POTS (Postural Orthostatic Tachycardia Syndrome). It sounds like you could be experiencing some similar symptoms.

Also, I know that when Doctors "don't know" the answer, or it's not generally something they have come across before, they tend to chalk it up to CFS or Anxiety and that makes me unnerved. I can't believe with all the resources, they can't come up with something different.

I really hope that you get down to the bottom of it and we're here for you through the process!

Jump to this post

@nicoleen1973– Hi. I am not familiar with back surgery. The location may or may not matter. What matters more is that surgery itself puts enormous stress and shock on the body. It is all connected. The back is not separate from the rest of the body. Only surgeons put body parts into separate categories.
When the body is stressed from a surgery , this can have a cascade on the physical/emotional. Immune system can lower, making more susceptible to all kinds of things. One thing with back surgery, if you are not moving around like normal. Laying down a lot. This can cause upper respiratory congestion/infection. Are you moving as much as possible. Drinking plenty of fluids? Hydrating?
Have you had the right support, healing afterwards? Such as proper restoration of vitamins/minerals and nutrients. Body movement and social interaction?
Healing in itself can be exhausting. It is very normal if you don’t feel you are healing properly or have a new issue, as a result of surgery to feel extremely fatigued and nervous. I recommend working with someone who can help calm your nervous system and make sure you are getting adequate sleep and healing nutrients. Once a surgeon is done with his surgery he/she is pretty much no help when it comes to complaints. And seeing more doctors for tests that come back normal can cause you to feel worse. Trust yourself first. Don’t allow doctors to let you think it’s all in head.

REPLY

@nicoleen1973 I think your respiratory symptoms could be allergy related to something in your environment. Are there any issues with water leaks in your home or work place? If there has been a roof leak that caused spots on a wall or ceiling, there could be mold growth and mold spores cause a lot of allergies and headaches and phlegm buildup in the lungs. Make sure your living environment is free of dust. If there is enough phlegm, it can raise your heart rate because it's in the way of oxygen exchange so your heart has to speed up to compensate, and it sets up conditions in the lungs for that to turn into a bacterial infection if the phlegm is not expelled. I have taken myself to the emergency room with my resting heart rate over 100 beats per minute because of an infection. They prescribed antibiotics which resolved it within days. Ear pain, post nasal drip causing a sore throat and tooth pain are symptoms that can be associated with sinus congestion. A sinus infection can later move that problem into the lungs. Tooth pain should also be evaluated with a dentist because you wouldn't want to mistakenly assume it is sinus related because of overlapping symptoms.

I have had issues with too much phlegm in my lungs that caused a repeating pattern of chest infections and I know that is coming on when my heart rate goes up just walking or using the stairs in my house. I have thoracic outlet syndrome which has physically affected the expansion of my rib cage on one side, and the infections would start on that side because of trapped phlegm. I am also a Mayo surgical patient, and as a precaution before surgery a few years ago, I was advised to use an antibiotic ointment, Bactroban (mupiroicin generic) inside my nostrils to prevent a staff infection. I tried this when I had a chest infection and was able to cure it, and my primary care doctor gave me a prescription. I also use a saline rinse for my sinuses, but that doesn't do much if it's totally blocked. The other health issue that was contributing to my excess phlegm in my lungs was that I had old dental work with root canals that were failing and I had an abscess in my jaw bone and the cadmium from the gutta percha material inside leaches out of the root along with bacteria from the tooth. I recently had the affected teeth removed for dental implants, and immediately, the baseline excess phlegm cleared up and I stopped getting repeating lung infections. I didn't expect that, and I shared that information with my doctors.

You may want to see an environmental medicine doctor or functional medicine specialist. I have asthma and have undergone allergy testing and get customized allergy shots. Allergy shots and antihistamines help, but if you are exposed to excessive amounts of allergans, they only go so far, so it is very important to look for and address any issues in your living environment. Mucinex (or generic) will thin mucous so it's easier to expel and drink plenty of water. I saw a pulmonologist too thinking my phlegm issues could be a MAC infection. There is a discussion group for that here on Connect that you may want to read as those are lung infections that are hard to cure. These links are for a provider search for AAEM, and a page about health issues related to mold exposure from the Environment Health Center in Dallas that describes the symptoms.
https://www.aaemonline.org/find.php
https://www.ehcd.com/mold-and-health

REPLY
@lehman

If it is chronic fatigue I believe they can run some blood tests called a metabolic panel.

Jump to this post

@lehman Welcome to Mayo Clinic Connect, a place to give and get support. In order to connect you with members like you, may I ask what brings you to Connect?

REPLY

I have been diagnosed with Eagles Syndrome, Chronic Venous Insufficiency, asthma or COPD (my PCP, my pulmonologist and a radiologist cannot agree on which it is) and Mixed Connective Tissue disease. I am in pain every day but the pain is not always in the same place. I feel ill. I am exhausted. I am having a lot of trouble thinking so I have a great deal of trouble communicating with health care providers. I do know that my symptoms are not being managed with the treatments I am on now. I have been diagnosed and treated for chronic depression and anxiety since I was 13. I’m almost 60 now and I have never had such a difficult time.

Liked by ess77

REPLY
@lorianz

I have been diagnosed with Eagles Syndrome, Chronic Venous Insufficiency, asthma or COPD (my PCP, my pulmonologist and a radiologist cannot agree on which it is) and Mixed Connective Tissue disease. I am in pain every day but the pain is not always in the same place. I feel ill. I am exhausted. I am having a lot of trouble thinking so I have a great deal of trouble communicating with health care providers. I do know that my symptoms are not being managed with the treatments I am on now. I have been diagnosed and treated for chronic depression and anxiety since I was 13. I’m almost 60 now and I have never had such a difficult time.

Jump to this post

@lorianz Welcome to Mayo Clinic Connect, a place to give and get support.

You are having multiple medical issues and the treatments you are receiving is not working.

You may find the lung health and chronic pain group helpful and I have linked it below.
– Lung Health https://connect.mayoclinic.org/group/lung-conditions/
– Chronic Pain https://connect.mayoclinic.org/group/pain/

It can be extremely difficult to treat multiple ailments at one time. I'm wondering if you've considered getting a second opinion and/or going to a hospital system that specializes in coordinating care?

Liked by ess77

REPLY
@erikas

@lorianz Welcome to Mayo Clinic Connect, a place to give and get support.

You are having multiple medical issues and the treatments you are receiving is not working.

You may find the lung health and chronic pain group helpful and I have linked it below.
– Lung Health https://connect.mayoclinic.org/group/lung-conditions/
– Chronic Pain https://connect.mayoclinic.org/group/pain/

It can be extremely difficult to treat multiple ailments at one time. I'm wondering if you've considered getting a second opinion and/or going to a hospital system that specializes in coordinating care?

Jump to this post

I really am sorry for my late reply. The most debilitating symptom I have had is just not being able to think. Communicating with all of my doctors is very difficult. I have started writing down the problems I am experiencing and then, before each visit, I dissect my notes so I only share the information for each ailment with the relevant doctor. 5 doctors and all but 2 belong to the same network. Of course that leads to insurance issues. My PCP has to send a “Prior authorization” for each “visit” to the pulmonologist, rheumatologist and now to whoever I find to help my with my Eagles syndrome. Just navigating through all of this has really made dealing with my depression/anxiety and worse of all, the social anxiety I experience, overwhelming.
So, how can I fix this? You suggested a hospital system. I am very interested in Mayo. I have a niece who is a NP with Mayo in Rochester. I have not told my family about my illnesses. If I contacted my niece the cat would be out of the bag. My Social anxiety is that bad. I can’t even talk to my family anymore without panic attacks.
Can you help me? I need a push in the right direction as to how I can access a diagnostic team and become a patient at Mayo. I am not sure about insurance. I don’t want to go anywhere that won’t take my insurance so I suppose that would be the first hurdle. I am so grateful for you and all the Mayo Connect participants. I’ve learned more here than at my doctor appointments.

Liked by Sundance(RB), ess77

REPLY
Please login or register to post a reply.