In my most recent post, which was a 2-year check-in since my MS diagnosis, I discussed a new health concern.
In June of 2020, I had an ultrasound on my liver after some of my labs came back bad. The liver issue resolved on its own, but the ultrasound found a tumor on my right adrenal gland. An MRI was recommended for follow up but was not done until January of 2021. It was put off because the “incidental adenomas,” as they’re called, usually mean nothing.
The week before my MRI, I began having shortness of breath and heart palpitations. I passed a Covid test, and my chest x-ray came back good. My doctor thought I had some other virus, and it would resolve in a few weeks. I almost canceled the MRI because my doctor seemed to think there was no reason for it. It also would be difficult to hold my breath as necessary for the imaging. I went forward with the MRI and am so thankful that I did.
The tumor had grown a little, and they ordered blood tests to be done to find out if it was producing excess hormones. If it was, they thought it would be something called a pheochromocytoma. It’s pretty rare, but fortunately, I lived in a city with a specialized adrenal clinic! They had me do two rounds of lab work, and both times, my hormones were high, indicating a pheo.
Pheos escalate blood pressure and are known to be resistant to medication. I also had heart palpitations, excessive sweating, shaking, and high blood glucose fits. The treatment for pheos is alpha and beta-blockers for a few weeks before surgery. I was already on a diuretic for high blood pressure before finding out about the tumor. I was then put on an alpha-blocker. This made my heart rate increase (which already ran near 100 at a resting rate), and I was put on a beta-blocker to control the tachycardia. A dotate PET scan was performed to see if there were any other tumors. Thank the Lord, the only thing they saw was a nodule on my thyroid, which was evaluated last year. It was decided to assess again in a year. It had grown a little, so it is now suggested that a biopsy be performed, but no signs of metastatic disease from the pheo or anything else. Surgery was initially scheduled for March 12, but I tested positive for Covid on March 4. The surgery was then pushed back to April 2. Additionally, I moved 2 hours away on March 1, but chose to continue care in Augusta despite the distance.
Fortunately, my Covid case was relatively mild. I did have a fever, chills, sore throat, and cough. I also lost my sense of smell and taste, but it returned faster than it seems like it does for most people. I still don’t have it back entirely 100%, but it’s a vast improvement! My husband tested positive on the same day, and then my son came down with strep throat the next day. My husband and I ended up getting that too. Thankfully, my daughter never caught anything! However, the children had to isolate themselves even after my husband and I were given the clearance to end our isolation. By the time the kids’ isolation time ended, the pheo was giving me even more problems. My medication had to be increased to control the blood pressure and other symptoms. I was on 7 blood pressure pills and 6 pills for tachycardia and had to change my diabetes medication before the surgery!
I was given instructions to discontinue any over the counter medications, including pain relievers and multivitamins, for a week before the surgery. The day before and day of, I had to shower with antibacterial soap, which came with specific instructions of allowing it to sit on the skin for five minutes. I found this curious as I have had surgeries before and never got told to do these things. I wasn’t sure if it was the nature of the surgery or the choice of the hospital. Of course, I couldn’t eat or drink anything after midnight.
Upon checking in the morning of the surgery, I accidentally paid the entire balance of the surgery instead of making only a partial payment. I suppose that’s one way for some people to use their Covid stimulus money! Realizing my error did not help my blood pressure. Still, I was relatively calm and figured I could probably talk to the hospital about it later. In the end, my husband and I decided to just let it be. We had earmarked that money for some other things, but we’ve robbed Peter to pay Paul long before Covid.
I wasn’t really nervous before the surgery. I had prayed and believed that it would only be necessary if it was God’s will. I was a little disappointed that I wasn’t a miracle case, but I’ll settle for being ordinary. LOL. I truly had no fear about the outcome of the surgery. However, I didn’t realize how *interesting* my case was! Before surgery, I met at least 8 doctors in addition to nurses that were either monitoring my case or would be actively involved in the surgery–and that did not include the actual surgeon presiding over the operation (according to the surgery note he observed and did not have to step in, one of the residents performed the surgery). There was some last-minute discussion about a pain medication they usually give patients. However, the anesthesiologist explained to his colleague that he didn’t administer them before surgery in pheo cases. It can stress the adrenal gland and make the pheo release more hormones, which is a big concern during surgery. There is always a risk of the pheo sending a surge that makes the blood pressure spike. According to the note, emergency medication was prepped and ready if needed. My systolic blood pressure did not go above 190. My diastolic must have remained normal because it was not mentioned at all.
Arriving in the operating room brought back memories of my daughter’s emergency c-section. I had already had one c-section before, in addition to sinus surgery and tonsillectomy as a child. In those three situations, the OR staff was laughing and conversing. They played music. With my daughter’s c-section, the room was silent, and the OB had a look of sheer terror in her eyes. I wasn’t concerned about the adrenalectomy as I knew I was ultimately in God’s hands. Still, it was an interesting contrast to see the staff be more like my earlier surgical encounters.
Although I had an anaesthesia mask over my nose and mouth. I didn’t even realize they had given me anaesthesia. I thought it was oxygen. I don’t recall feeling sleepy. In past surgeries where I was put to sleep, they told me to breathe deep and count backward. As they wheeled me to my ICU room, I woke up, and boy did it hurt like the dickens. The first few hours of recovery were a bit of a blur, with many doctors coming and checking on me or teaching students in the hall. I saw the surgeon for a brief second, just long enough for him to tell me that the surgery went perfect. At that time, I did not realize he wasn’t the one who removed my adrenal gland and instead, the doctor who checked on me a few times was the one who had done it. I can’t remember his name (it is in the note), but I appreciate the care he took to see how I was doing.
The surgery itself was done laproscopically. I have four 1-2 inch long incisions on my right side, stretching relatively from my hip to the bottom of my rib cage.
So, the short story is that my recovery was not as fast as “usual.”
I was initially told that most people feel normal within 1-2 weeks and only have to miss 1 week of work. No way would I have been ready to go back to work after only 1 week. I was also only given 12 pills of the narcotic. Tylenol did nothing to really take the edge off the pain. I’m sure it’s because my routine before the surgery was Aleve and Tylenol just to get through the day. I ended up seeing an urgent care doctor in my town (remember, I’m 2 hours away from the hospital) on day 8 to get some more of the narcotic. I think I took 4 more doses, but it was very helpful and allowed me to rest and move a little without intense pain. Most importantly, it allowed me to sleep, which is one of the best things to heal your body.
At my post-op appointment on day 12, they realized much of my pain was from muscle spasms in my back. In the doctor’s note that I could read online, they used the word “expected pain”, and even in the room weren’t surprised at all when I said I had pain in my back. They said that they basically scrape along the muscles (which I did read in the operative note). Well, then why didn’t you give me a muscle relaxer to start with? I thought I was just sore from how I had to lay propped up and twist to get in and out of bed.
I tend to have issues at doctor’s offices with accurately illustrating my pain levels and problems. First, I have realized that I have trouble rating acute pain versus chronic pain. I had said I was feeling pain at a 5 or 6 in the hospital, but really, that’s how I felt after being home for several days. I think while I was still in the hospital, it was much worse, and I just didn’t really accept that until I had “sat” with the pain for a few days. I’m not sure if that will make sense to anyone without chronic pain. At my post-op appointment, I decided the best way to explain how I felt would be to talk about my habits that had changed since the surgery. I showered the day after getting home, mostly to get the iodine and sticky patches off me. Then, I wasn’t able to shower for another week. The pain was just too intense for that much standing and moving. I went to church that Sunday, day 9, and it was HARD. I only showered because I would be around people. I didn’t shower again until the day of my post-op, which was day 12.
They prescribed me 5 days of Toradol and said if I needed more after that time, it would have to be a different medication. However, I was much improved after the 5 days. By the end of week 2, I was off the narcotic. By 2.5 weeks out, I was off the Toradol. I am now 4 weeks out from the surgery and have switched to Aleve, which I used for my daily pain before the surgery. I sometimes need Tylenol in the evening. However, I have very little to no pain near my incisions or back now. Most of the pain I have is centralized in the front of my abdomen and near my belly button, where I probably have adhesions from my first c-section. The pain can be pretty acute but doesn’t last for long.
I ended up with a small cellulitis infection at the site of my IV. I dealt wtih that via my insurance’s telehealth option. Clindamycin was prescribed for 10 days and improved greatly in just one day. I’m glad I dealt with it when I did instead of waiting a few days for my post-op appointment.
Thankfully, my incisions healed great and I had no sign of infection there. They were glued closed (similar to what was done with my second c-section) and the last of the glue finally came off the other day. I was worried about infection for a little bit because on day three, I had a fever right at 101.5 and chills. The discharge papers said to call the ICU if my fever went above 101.5. They told me that I could go to my local ER or wait until the morning. Overnight, my fever reduced a little. It took another two days for it to go away entirely, though. The cellulitis infection didn’t seem to develop for a few more days, but I wonder if that was related.
My cortisol level was low in the hospital, so they put me on 20mg of hydrocortisone for 3 weeks. I began having mood swings with that, and, thankfully, my doctor has decided to scale it down. I have taken 15mg for the last week, and tomorrow will be starting 10mg for a week. Then I’ll reduce to 5mg, and then 0. We will check my level at my next post-op appointment. I hope that appointment can be virtual, though, so hopefully, I can get the lab done locally and send them the results. Since reducing to the 15mg dose, I feel a lot better emotionally.
This past week, I’ve been busy establishing a better routine with my kids with homeschooling, including several activities that get us out of the house. It’s safe to say that I’m feeling better than I have all year! I’ve squeezed in a little bit of time to write and hope to have more time in coming weeks.
Immediately after the adrenal gland’s removal, my blood pressure returned to normal. I continue to take the beta-blocker for tachycardia as they have to wean me off that and can’t stop it suddenly. I’m off all blood pressure medication, including the one that I had been on for years. As one of the doctors said before the surgery, this thing had been there for a long time and was probably the reason for the first diagnosis to start with. No one ever suspected my high blood pressure was caused by an adrenal tumor and wasn’t weight and lifestyle-related because the tumor is so rare.
I’m still on the new metformin blend as I’m tolerating it well, but my glucose is functioning better too. I *feel* better. I have more energy, and I sleep better. I can tell that my blood pressure is better, and my heart rate is not as high. I am not as heat intolerant (some remains because of MS). I have had no headaches or dizzy spells. Going up and down the stairs is easier!
Pathology on the tumor came back benign.
I thank God for His healing hands on me and guiding my care team. Suppose my blood pressure began spiking the way it did in January without knowing that I had a tumor. In that case, it could have taken months of medication failing and continued side effects before considering a scan that found it. Compared with a lifetime of being on blood pressure medicine and this surgery, the surgery is definitely worth it. Pheos can produce deadly levels of high blood pressure without notice. I was truly at risk of a heart attack or stroke, and we wouldn’t have known what was going on until it was too late. Although I had to be on a lot of medication and have surgery, in the end, we were able to catch this thing and prevent a calamity.
Additionally, I’m thankful that there were no complications during the surgery or in the recovery. It may have been a little slower than the doctors expected, but it has not had anything to cause concern.
When I was a teenager, I had a series of dreams. Most of them have since been manifested. In one of them, I was an adult with children of my own. I was healthy with no medical concerns and no need for medicines and pills. I believe someday that will happen. I will use my voice to testify about the healing power of Jesus!
15 thoughts on “Pheochromocytoma + Adrenalectomy”
OMG: what a story and I admit I was skimming through some as it was so long and complicated. I have been praying for you daily and will continue to do so. May GOD truly bless you and heal you as you continue to recover.
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I’m sorry it was so technical. When I was trying to do research on what to expect, I found very scant information and nothing from the patient’s point of view. Maybe this will help someone out there. Thanks for your prayers!
Good thoughts and prayers. I am heading to Philly with my sister at the beginning of June for a second treatment for pheos which reoccurred after surgery. Injected with radioactive materials and then required to stay inpatient until radioactive levels are low enough for discharge. Please make sure they monitor you for several years after your surgery. My sister had follow up for a year and then nothing and the pheos returned with a vengeance throughout her body.
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Thanks for the advice. I will definitely be sure to follow up on this, even though I will probably move my care to a closer endocrinologist. I didn’t realize pheos could be in other places!
Sad to her of your news but, happy that with surgery that you are better. Sending you prayers and blessings to you and your family.
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Thank you! I know all the prayers helped!
sending lots of hugs and prayers. so happy surgery went as good as it did.
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Thanks! I’m so thankful for all the prayers and thoughts!
I’m so glad that it was discovered, followed up, and now you are recovering and feeling normal.
I too have a problem rating pain for doctors — do they want the total pain level or just the change from my fairly normal level. They usual look at me as if I have two heads.
I’m sure that your dream will eventually be the reality.
Hugs and best wish on continuing health and recovery.
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I think it’s crazy how doctors have systems for things and yet have never expereinced them. I really felt a bit bad for not recovering faster, but I knew not to push myself too.
Delighted to hear you are doing much, much better, Rose. Hope you continue to heal and improve. ❤
Wow, a wild ride!
I am interested in your comment “tested positive for Covid” – where I live (we have no Covid in the community *AT ALL*) that would have thrown my entire region into lockdown and our state borders would be up in a flash. It seems though, for you, it was almost business as usual and just another cold. You are so fortunate it turned out to be practically just another cold.
Best of luck with all you do and experience.
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I would say it was a little worse than a cold but not as bad as most flus I have had. I know some people have serious complications from it, a few that I have personally known. However, most people do not have issues and I read from the beginning that scientists believed we’d all get it at some point. Even now with vaccinations, it doesn’t work on all mutations and the virus continues to mutate and spread. I count myself lucky that while my husband was an essential employee this entire time, we went a whole year without contracting it. We’re also fortunate that we don’t come in contact with any elderly or immunocompromised people. We have been following guidelines and safe practices, of course, but it definitely alleviates a lot of the concern when I don’t have to worry about being my elderly father-in-law’s caretaker, for example.
Where do you live that you haven’t had any Covid cases at all?!!
You were indeed fortunate to go a year Covid free. And then fortunate to have a mild case.
I live in Western Australia – we have had cases but they have been so tightly controlled that we can say with confidence it is not in the community. There has been about 30K cases in the whole country with 901 deaths and about 1000 in my region (it is a huge region).
We have very strict quaranteen requirements for international travellers (2 weeks hotel quaranteen with very steep fines/jail time if you don’t comply). There have been several outbreaks which have previously plunged various cities into lockdown, but we are, as a country, enjoying our freedoms. Masks on public transport and other social distancing measures are in place, but generally we are living life as we always have (except very few are travelling internationally).
Vaccinations are happening (I get my first one in a couple of weeks)
Healthy, happy times be with you
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