Can't Get Help. What Next?

@bustrbrwn22 You are welcome and thank you for your kind words. I always try to use myself as an example if it can help someone else learn how to advocate for themselves. I didn't start out knowing how to do this and I grew up fearing medical procedures. I learned all of this the hard way and the funny thing is that my parents really wanted me to be a doctor and I got a biology degree with that in mind, but when it came to that decision in my young life, I knew that I could not handle the stress and trauma that doctors must deal with. I lived with those fears right up until I needed to face them when I went through spine surgery. I couldn't let my fear decide my future and I had to face it and deprogram it in order to have the surgery I needed to keep from becoming disabled. That is both an easy choice and a hard choice at the same time, and I was changed by that experience. So I will put the question out there... how does fear, anger or regret hold you back from making decisions that could better your life? How can you change that now?

@jenniferhunter I will ruminate over your question for a couple days. It really is a profound,
potentially painful question. Thanks for the therapy.

@jenniferhunter Thank you Jennifer for sharing your story and trying to provide hope in the midst of challenging circumstances. I appreciate your reminder to advocate for what we need. That’s really difficult sometimes when you feel so lousy, but I’ll keep trying.

You asked about symptoms:

1. Overwhelming and totally debilitating Fatigue. I sleep 10-14 hours a day and never feel refreshed. This began about a year ago after my fifth spinal neck surgery. It was like someone flipped a switch one day. I used to be really active teaching and leading classes, providing spiritual direction and counseling. Now, a shower zaps all my strength in a day. A fifteen minute phone call with a friend requires 3 days of recovery. My husband tells people that my energy level has been at zero since my surgery, October 2019. AM cortisol levels have been consistently low but 2 cortisol stim tests seem to indicate that my adrenal glands are functioning. Still, I suffered a really extreme UTI a month ago that went from just showing symptoms to the worst I’ve ever had in just 3 hours. I ended up in the ER peeing pure blood. It was as though my body had absolutely no ability to fight infection. This scared me.

2. Nearly 60 pounds of unplanned weight loss. I’m really struggling to eat because I don’t feel well. Food can smell good and I can be hungry, but after 1 or 2 bites, I can’t eat any more and nothing tastes good. I try to eat anyway because I need the nutrition, but every day it’s a struggle. Even my favorite foods aren’t appetizing.

3. Just last week my primary care provider said that after reviewing several years worth of labs he noticed a pattern. He said I had “thick blood” - a consistently high red blood cell count and hematocrit and low lymphocyte count.

4. Daily chronic headaches. We initially thought these were a side effect of my last 2 neck surgeries, but now we aren’t so sure. I have undergone 5 cervical neck surgeries in the last 4 years. I am now fully fused between C2-T2 and have had rods placed in the back of my neck for stability. I recently went through my first round of Botox injections for migraines and torticollis/cervical dystonia. I lost a good amount of movement with this surgery and headaches were expected, but they may due to other issues as well.

5. Blood pressure variability - high one moment, too low (70/50) the next, with dizziness.

6. A profound sense that there is something terribly wrong. I feel off. I can’t necessarily point to why I feel this way, but I don’t feel like my normal self. Just once I would like to wake up in the morning and think “Wow! I feel pretty good!” Instead, after sleeping 12 hours I get up and think, “ it won’t be long before I need a nap. I’m still really tired.”

I should mention that my last neck surgery didn’t go quite as planned — as that’s the time frame when the extreme fatigue began. It was supposed to be a 6 hour surgery, but it actually took 8. The surgery went through the back of my neck and included the addition of rods which run from C2-T2 and involved the removal of a spinal cord stimulator that didn’t provide the pain relief we had hoped. My surgeon (who I love and trust with my life) punctured the dura while trying to remove a large amount scar tissue around the spinal cord stimulator paddle. This led to a spinal fluid leak that landed me in the ICU for 2 weeks as I experienced spinal headaches. In addition, I experienced severe pain post surgery. They utilized steroids to help decrease inflammation, but this led to the skin along the incision not healing and causing a sizable Seroma on the back of my neck. My surgeon was terrified that the seroma would become infected leading to sepsis, but thankfully that didn’t happen. Still, I had high CRP levels for months after the fact and I was on high dose antibiotics while we waited for the seroma to heal. After being discharged from the hospital, my surgeon actually made daily visits to my home to make sure I wasn’t developing an infection in my neck.

Simple question from a non-medical person, your not allergic to something (metal) that was placed in your body?

The last couple of days I've been thinking a lot about faithgirl30's experience and Jennifer 's response . If I had the same experience as faithgirl30 had, I would also be devastated. I also admire Jennifer 's ability to be her own health advocate. If we won't advocate for ourselves, who will. As I think about this within my own experience, I was fortunate to have a doctor who was also my advocate.
My doctor, a GP, saw my health issues before I was even aware of them. Ten years ago, when I turned 65, he made sure I had a colonoscopy, because I never had one and he felt it was important. They found a carcinoid tumor in my small intestine and removed it to biopsy it. In the process he created a small perforation in my colon. Several hours later I was in extreme pain and went to the ER. The specialists at the hospital didn't think I had a perforation and after getting the pain under control, getting me on antibiotics and seeing my bowels start working, they sent me home. My GP saw me the next day and extended the antibiotics and kept seeing me every other day, even though he has a very busy schedule. I sensed that he didn't trust the judgements of the ER doctors. The next week I began vomiting. I went to urgent care and they treated me for food poisoning. The next day my doctor 's office contacted me and told me if I began feeling worse to go immediately to the ER. The following day I was slightly worse and contacted the doctors office. They told me that they were contacting the ER saying I was coming and to immediately do a CT scan. The scan found the tear and a large cyst. They began filling me with antibiotics and then drained the cyst. After being on heavy duty antibiotics for over a month and then surgery to remove the affected part of the colon. I recovered. My doctor then followed up with me every 3 to 6 months. Fortunately , there has been no reoccurring of the cancer. His dogged concern about my condition probably saved my life.

The next time he made a difference was two and half years ago. He sees me every 6 months and each time does a battery of tests before we meet. All of the tests were within the normal range. I thought I was good. However. He was watching my PSA and saw a rising trend and became concerned. He sent me to a urologist, who did a biopsy and found cancer cells that were very advanced. The urologist gave me a book about the cancer and possible treatments. He told me to read it and then we can meet so I could tell him which treatment I wanted. I left that session with the thought of how in hell am I going to know which treatment I should take. Aren't they the experts. Shouldn't they tell me. I contacted my GP and he said he couldn't help me. For the first time, he didn't have the answer. It was the most stressful time of my life. I then turned to people with personal experiences, as many on this site have done. After reading and talking to a number of people, I decided on Proton Beam Therapy at the Mayo Clinic in Phoenix.

When I got to Mayo, I knew what my problem was and what I wanted to treat it. What happened next is what I think is Mayo's strength. My first visit was not like anything I had experienced at a doctor's office. We first spent 30 minutes with a nurse who got to know us and reviewed my results and background. She then told us what was available at Mayo, including support for me and my wife. When the doctor came in he went over my condition and what additional information they needed before they could firm up my treatment. It was information that I had not heard from other doctors and it was clear he knew what he was doing. After a number of MRI scans confirmed the cancer was contained in the prostrate, we talked about actual protocol. Since my cancer was in an advanced stage, he set up treatment of hormone therapy and radiation. The combination increased my chances of survival by 20%. The treatment has been successful.

In all of my interactions at Mayo, the staff was never in a hurry. I always felt they would take all the time needed to be sure I understood what was happening and to answer my questions. They are knowledgeable and have available the most advanced treatment options. I can't speak to how they would've treated me if I wouldn't had a previous diagnosis. Clearly, it's much easier for a specialist to use their expertise when they have a specific diagnosis to treat.

So, I would also like to talk about my daughter's experience with Mayo. She moved to Phoenix area two years ago and got into Mayo's Family Practice unit. She had been experiencing some health issues for a number of years, but none of her doctors could find the problem. Her GP doctor at Mayo said they would find the problem and she would not fall through the cracks. After some extensive testing, they did find the problem They treated her and she is now feeling healthy.

She found a doctor who became her advocate. Maybe general practioners are more oriented towards being advocates for patients because they deal with so many different health issues and need to find the right specialists for their patients. I know my GP doesn't like it when he can't find the right solution for his patients. He takes it very personally.

I know we need to be an advocate for own health, but it's so much better if we have a health professional who is just as much an advocate. I feel so fortunate that my daughter and I have doctors that went the extra mile for us. I once had a doctor who didn't have the same commitment and I looked further until I found the one I have now. I hope that all of those here who don't have that advocate are able to find one who will make sure they receive the treatment they need.

@colleenyoung Hi Colleen! I wanted to let you know that I followed up as you suggested and used the link you provided to get in touch with the Office of Patient Experience to share with them my disappointment with the Mayo experience. I am hoping they will indeed call to follow up as they stated they would. Thank you for sharing this information and for encouraging me to reach out with honesty. I also sent a note to the doctor asking her who she would recommend I see next, but there has been no communication from her office.

@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/

@jenniferhunter Oh, Wow! Jennifer this is an absolutely amazing and reflective response to my post. It both brings me encouragement to see how deeply you reflected on my constellation of symptoms, and sadness because it was this kind of conversation I had expected to have with my doctor at Mayo last week. This was exactly the level of professional medical assessment that brought me to Mayo and it brings me hope that this kind of integrative reflection exists.

I will spend some time over the next few days reading carefully what you written, but thank you for what genuinely feels like an act of love. On this Thanksgiving day I am thankful for the ability to find compassionate, empathetic and caring people in some of the most unexpected places.

I read your story (thank you for sharing it with me) and I found great hope in your own story of courage and the ability to overcome great odds to discover healing and second chances through medical miracles. I’m so thankful you have regained the ability to paint and to utilize the vast array of gifts you have been given for the good of the whole world. Thanks again for writing the above post. It brought tears to my eyes.

Also, @roch i want to thank you for your question about a possible allergic reaction to the implants in my neck. There is now more metal in my neck than bones, and I think this is a valid question to explore. It’s not one I had considered until now.

Ps. I didn’t know this X-rays would be full size! I thought they would post as little photos. Sorry about that. I wouldn’t have included them.

What do you do when the office of Patient Experience won't help with a serious issue?