@faithgirl30 Thank you for your detailed description. This is what your doctors need to hear. I wanted to respond at length with some thoughts and links to information. I hope this will help you find a new direction to get help at Mayo. You can self refer like I did, so you may not need to go through the Endocrinologist who saw you. I hope this gives you a list of concerns and questions to bring to your providers and helps you advocate for yourself. I am happy to help, so please reach out again if you have other concerns. I am not in the medical profession and this is not a diagnosis, but I question why things are the way they are.

From your experience of the infection that progressed rapidly, and the history of having fewer white blood cells, that suggests that your immune system may be compromised in some way. The white cells fight infections of bacteria and viruses. There are many kinds of white cells and I'll include some links that explain. With the COVID pandemic risk increasing at this time, you may want to try to avoid travel and try to use remote physician visits. You would be at a higher risk without a full compliment of immune cells to fight an infection. Mayo does have protective measures in place, but traveling to get there certainly has virus exposure risks. In my travels back and forth to follow up at Mayo, I've taken steps to completely clean my hotel room and I take my own bedding and HEPA air filter. We drive and try to minimize stops. I have higher risk because of asthma.

Have your doctors addressed why your blood cell counts are off? Not just white cells being low, but the red cells that are higher? That could be caused by dehydration lowering your blood volume or it can be because your body is adapting to low oxygen levels like a person who lives at high altitude. This also has me wondering if there is a physical reason your body would act like oxygen levels are low if they are not. Do you have lung issues? Have you counted how many times you inhale and exhale in a minute while at rest? This is completely at rest and not being anxious about anything. I know from my asthma and allergies that my breathing rate can be variable and much higher if I have a lot of chest congestion interfering with oxygen absorption. My asthma had gotten worse which was causing me to get repeated chest infections. This year, I also had oral surgery to remove some teeth with failing root canals, and immediately my lung function improved and the congestion cleared up. My resting respiration rate decreased and I pause between breaths so I had been affected by inflammation and congestion stemming from infected teeth. Heart function matters too because it needs to efficiently pump the oxygenated blood to the body. If oxygen is not delivered to the body properly, it causes fatigue. It's easy to check oxygen levels and heart rate with a pulse oxymeter like your doctor does at office visits with the red light on your finger.

This leads me to other questions regarding your multiple cervical spine surgeries and the history that led to the procedures. The Phrenic nerve exits the spinal cord near the C3 level and travels down next to the spine, through the neck/shoulder area and to the lungs. This nerve can be injured or damaged which can lead to a paralyzed diaphragm, which could lower oxygen levels. This does increase the risk to spine surgeries near the Phrenic nerve because of its importance. It is worth asking if this nerve was compromised by surgical scar tissue or inflammation.

My suggestion would be to get a different opinion about the outcome of your spine surgeries. Were all 5 of your spine surgeries done by the same surgeon? It raises a red flag to me to see 5 spine surgeries in 4 years time, and I realize some of that involved a spinal cord stimulator. With your spine fixed from C2 down to T2, that only leaves C1 and it's discs to allow you to turn your head side to side, and that is affected by the torticollis/cervical dystonia and all the headaches and dizziness that comes with that. I know that you like your surgeon, and were impressed that he visited you to check for infection. However, sometimes surgery makes a patient worse, or there was a mistake made. He was also looking out for himself and worried about a mistake and his reputation. When I had a spine injection that caused me to have burning electric pains in my hand, the anesthesiologist who did the injection called me every week to see how I was doing. He did feel bad for causing that and the pains went on for about 6 weeks. After that, I had cold sensitivity in my hand for a year and a half. I refused to do spine injections after that.

In my experience before and after my C5/C6 fusion, I had a lot of muscle spasms that straightened the curve in my neck, and twisted or tilted vertebrae. I had a slight bit of slipping of vertebrae. I also have thoracic outlet syndrome which is a lot of tightness of muscles between my neck and shoulder and it causes compression of nerves and vessels between my collar bone and rib cage. That was a player in twisting my vertebrae because one side was always tighter than the other, and the bones go where the muscles pull them. I had problems where C1 through C4 would rotate slightly on their own and stay there. Sometimes it was just C1 and C2, and when those shifted, I had horrible headaches up the back of my head and vertigo. I happened to look upward at migrating birds which started vertigo immediately and I fell backward. I had not realized that C1 & C2 had shifted and arching my neck and looking up set it off. Sometimes C1 or C2 were tilted. I was working with a good physical therapist who taught me about this and she gently realigned my spine with the assist of muscles that are attached to the vertebrae (no chiropractor manipulations which are dangerous if there is spinal instability). That resolved the vertigo until the next spasm. After my spine surgery, the spasms calmed down and I don't suffer with vertigo. If I put my neck and hold it in a turned position, I can start a spasm, but I know how to stop it as soon as it starts by massaging my neck.

I think it would be in your best interest if a spine expert reviewed your post-surgical imaging and looked specifically at the alignment of C1 with the rest of your spine and how your skull sits on top of it. My PT told me that there are dural connections to the muscles at the base of the skull and if these muscles are tight with spasms, or by being held in a turned position, it transmits that pressure to the dura causing headaches. Other considerations are the vertebral arteries that ascend next to the cervical spine on their way to the brain. If their path is compromised, it alters the blood flow to the brain. Bow Hunter's Syndrome is an example of this where C1 remains in a twisted position which causes the vertebral artery to be stretched and cuts off circulation. I don't know if you have any similar issues, but C1 is your only mobile vertebra and you have the toticolis/cervical dystonia spasms trying to move your neck. I don't know if this affects blood pressure variability, but that would be a question I would ask if it could be related to spine issues. The emotional component of fears about your health does affect blood pressure. I have been guilty of that and by addressing and working through my fears, I have better control of blood pressure spikes related to medical procedures. I also learned how to drop my blood pressure with slow deep relaxed breathing. Anxious shallow fast breathing will raise blood pressure.

To sum up:

1. Address the reasons why your blood counts and immunity are not normal.

A friend of mine had an issue with a rare type of anemia where her doctor consulted Mayo and found her body is killing off her own red blood cells too soon creating a shortage in their replacement. The type of doctor she saw was a specialist in blood cancers.
https://www.mayoclinic.org/symptoms/high-red-blood-cell-count/basics/causes/sym-20050858
https://www.healthline.com/health/lymphocytopenia#risk-factors

Lyme Disease can evade detection in the body by hiding inside the white blood cells (said by a functional medicine doctor) which deprograms the white cells for fighting infections. A test from the Igenex lab and read by a Lyme specialist (such as an ILADS doctor) can find it or rule it out. Unfortunately Lyme and the related co-infections are controversial even within the CDC. It may require an aggressive treatment long term to eradicate if it has been present for years. Lyme causes different symptoms depending on where it travels in the body; including low white cell counts, constant headaches, fatigue, joint pain, mental fog, neuropathy, etc. You can order a blood test kit from Igenex and they may be able to give you names of doctors using their lab, or you can use the provider search for ILADS. Make sure you drink enough water.
https://www.ilads.org/patient-care/provider-search/
https://igenex.com/tick-borne-disease-testing/

2. Boost your immunity with help from an integrative doctor.

Nutrition and gut health are very important. If you don't have enough protein, your body can't function well to make the blood cells it needs. From your description of nausea and weight loss, you are not getting good nutrition. Vitamin D helps boost immunity. My doctor advised the K2 D3 supplement from Orthomolecular because the K2 regulates against causing calcium deposits in arteries. High doses of Vitamin D without vitamin K can cause this. Vitamin K is in leafy greens.
https://www.orthomolecularproducts.com/vitamin-k2-with-d3/vitamin-k2-with-d3/125030/

There are Immunoglobulin supplements. This is one from Metagenics https://www.metagenics.com/probioplex-intensive-care .

Here is an excerpt from this study. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7123824/
"Immunoglobulins together with T cells are the key mediators of adaptive immunity, and deficiencies in either of these two arms of the adaptive immune system can result in higher host susceptibility to bacterial, fungal, or viral infections [76]. Immunoglobulins interact with the cellular immune compartment at multiple levels aiming different cells, including dendritic cells, the monocyte/macrophage system, granulocytes, natural killer cells, and various subsets of T cells and B cells [38, 102]. "

Metagenics also has many medical foods to address health issues. They are kind of expensive, but it may be easier to mix a powdered food into liquid and drink it to supplement your meals. If nausea is interfering with being able to eat and causing weight loss, perhaps an anti-nausea medication can help that.

3. Investigate blood pressure irregularites.

Mayo has a vascular lab for this kind of testing. I did tests there for my thoracic outlet syndrome with Doppler imaging and tiny blood pressure cuffs on my fingers. I saw a vascular surgeon to interpret the tests as part of my pre-surgery workup.

4. Review your history of spine health, injury, and surgeries with a new spinal deformity expert.

You will need all your imaging, X-rays, MRI, and CT scans. You can take this as a new approach to being seen at Mayo. My neurosurgeon reviewed my imaging when I requested to be seen at Mayo, and that is done to see if Mayo can help. I had been turned down by 5 surgeons, and turned to a specific surgeon at Mayo in Rochester for an evaluation. I had read his papers and thought he was a good match for my case and his area of interest. It doesn't cost anything to have imaging reviewed for a potential spine consult and you have symptoms that may have been caused by your last spine surgery.

This is how I became a Mayo patient, and my surgeon referred me to the neurology dept, and the neurologist connected me to the vascular lab, blood tests and MRI and the neurology tests. My neurosurgeon has also been helpful in arranging a pulmonology evaluation a few years later, and I asked him again this summer for an orthopedic trauma surgeon for my ankle injury and he sent me to a good one. I know I can trust his opinion and recommendations. A question that comes to my mind about spine surgery is this... any surgery has a risk of infection, and with a lowered immune system function, that risk would be a lot higher. Did your surgeon take this into account before your last surgery, or was the lowered white cell count an outcome of the surgery itself? Ask if the evaluation can be done remotely because of a compromised immune system and the current pandemic. Mayo does have good safety protocols in place. I would highly recommend my surgeon, Jeremy Fogelson, if you wanted to be seen in Rochester. I can give you his appointment number if you wish. He is one of Mayo's best and was recognized for outstanding work during his medical training before he came to Mayo for the neurosurgery program, where he now teaches, and also outside of Mayo at surgical conferences. My story is below.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/