Monday 23 March 2009

The adrenalectomy surgery

My Decision:
On March 16, 2009, I had an adrenalectomy to remove both the tumor and the adrenal gland due to Conn's. The main reason for this decision came down to blood pressure. My father died young-ish with complications due to high-blood pressure, I couldn't imagine a life like that. The percentage of curing hypertension through this operation ranges from 60-70%, depending on which medical journal you read or what doctor you talk to. It can seem risky, but most people I met who have had the procedure all had successful outcomes.

The surgical process was more than I expected. One good thing is that it's done laproscopically, sparing the waist of a large scar that would encircle it. I have 4 small incisions on my side and they will probably blend into my skin in a year or so. The process prior to surgery echoes the testing you take to diagnose Conn's in the first place; it's detailed and exhausting. Two weeks before surgery, you will feel like you have been tested for anything and everything under the sun. If after all the testing, all they find is the adrenal tumor, you can feel pretty confident your health will be in check for at least 5 years. Don't misread this; we all are getting older and other things can happen. But you are poked and prodded for at least a year solid to find out what type of tumor you have, and if there's something else wrong with you, there's a good chance they will find it.

Before:
You are admitted.
Blood work/Vitals are taken
Pregnancy Test for women
Surgeon comes in to explain procedure
You will walk into the operating room
I.V. for anesthesia
The wait time is 45 minutes- hour before you get into operating room depending on the surgery schedule.

After:
You will be in intensive care immediately following the surgery. I was hooked up to every machine I had ever seen, it was very intimidating. The pain was profuse, but Dilaudid is a just nurse call away. Sleep is almost impossible, the machines you are attached to are mainly what keep you up. You will be hooked up to a blood pressure monitor, 2 I.V.'s- one for fluids and one for pain medication, a cardiac monitor, and a catheter. You will also have leg circulation pumps to make sure you don't get blood clots. It's important to move your legs around to prevent these.

The second day, your surgeon comes in and reads your vitals. My BP was dropping steadily, so they moved me to another floor. They also took me off most of the machines, and removed the catheter. Once I was in my room, I slept for what seemed to be an eternity. An immediate improvement I noticed that day was the absence of the awful 'brain fog'. For at least 2 years, I have felt like I wasn't here, like I was floating and stuck just under the radar cloud of human life--basically, caught in a fog. Feeling like this brought me down so low I became reclusive. Many Conn's sufferers state this as a major problem. I still get infuriated reading symptoms of Conn's from sites claiming the only real symptom is high blood pressure (no thank you, Dartmouth/Hitchcock Medical Center). I'm here to say that is utter nonsense. Conn's patients suffer from so much more. To no longer feel brain-fog was an elation.

They released me on the third day even though I still felt like hell. I honestly don't feel I was ready but that's our system. Once I got home, it was rest, rest, rest and drugs, drugs, drugs. I had a very hard time climbing steps and was told not to (an impossibility in my house). You really need someone there to help you, so if you are alone, this is a time to call in the favors.

The pain started to ease up within a week. You will not be running to the bathroom as much and the dehydration is gone. If you are like me and get antsy quick, you'll want to move around. No steps for a week means what it says. I challenged this (of course) and paid for it with lots of pain. Take the time to rest, at least 2 weeks.

Immediate Noticeable changes:
Changes in the remaining adrenal are noticeable within a few weeks. I started to get energy bursts within one and a half week. I can't begin to explain my euphoria over this. Another good, though odd, change was sweating-- I didn't sweat the last 2 years, and now I perspire quite easily. There is a finally a normal frequency of nightly bathroom visits-- instead of 4-5 times, I'm back to my one nocturnal trip. The migraines are completely gone, hallelujah! Major Bonus: I no longer take 5 medications, which were stopped immediately post-surgery. There are now new things like hormones kicking in which can be exciting. Overall, there is a renewed sense of well-being...and hope.

Overall Opinion:
I am thrilled I had the opportunity to remove my adrenal tumor. After meeting others who are considering it, I can wholeheartedly say I recommend this surgery. I personally thank two women (Rose and Tracy) who helped point me in this right direction. The endless conversations I had with Rose were highly appreciated. She had Conn's, and had the worst symptoms I had ever heard of, including 5 visits to emergency rooms for arrythmia and low potassium. After her operation, she told me she felt 15 years younger, I now understand what she meant.

It's been a long road getting here, but there is an end-- and it is filled with the physical well-being Conn's robbed me of six years ago when it first attacked my left gland. Major surgery is never an easy decision nor is it easy to undergo. But if it's an option, I say look into it, ask others who have had it and weigh your thoughts. Hopefully this surgical recap will help any of you that have an aldosterone-producing adenoma and are on the fence.

19 comments:

Giminy said...

Hi,

i have read you blog and would like to thank you for posting it. It has helped me a great deal in understanding more of what is happening to me and what will eventually happen after the surgery. I have been diagnosed with Hyperaldosterone for about a year now.

The symptoms you mention are very similar to mine and it is nice to know that i'm not alone. Up until now, i thought that i was just tired all the time, but your choice of wording concerning the "brain fog" is well chosen.

Thanks again.

Jeannette

Hua said...

Hello,

First of all, congratulation for the recovery! This post will give so much hope to those who are in the similar situation as yours!

I am impressed by your blog on conn's disease. I think you should have your voice heard by over 6 million monthly visitors who come to Wellsphere's website to seek information on a variety of health related topics. We would like to raise the awareness of conn's disease, and connect you and other people who are in similar situations. Through Wellsphere's HealthBlogger Network, you can engage with others to lend a helping hand for one another.

For more information about joining, please visit http://www.wellsphere.com/health-blogger or email me at hua [at] wellsphere [dot] com.

Hope to hear from you soon!
Hua
Director of Blogger Networks

Welcome to Holtorf Medical Group said...

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AJ Tundra said...

I read this blog for the first time today and almost fell out of my chair. I had an adrenalectomy three days ago, and I am still recovering.

When I read your words about the "Fog" and "becoming reclusive"... I couldn't believe there were others who felt that way. I have had SEVERE Hypertension for 10 years, and have tried dozens of meds (about 30) and multiple doctors. One finally figured it out 4 months ago, and gave me new meds to combat the aldosterone.

My Description was as follows:
"Until you fixed this, I didn't realize that I had just 'given up' on life. I would rather sit and watch the grass grow then interact with friends, family, or play games... the mental effort was just too much. I needed quiet time, by myself... and even my favorite activities were just too 'hard'. Not just physically, but mentally and emotionally... I stopped caring. I feel I have my life back now.

And that was just on MEDICATION!. My doc described my aldosterone as the highest he had ever seen. As soon as I get off these pain meds and get my act together, I am looking forward to putting my malaise behind me. Oh... and I have already lost 35 pounds since I started treatment. Life looks good, soon to get better (I hope).

And here I thought it was just me!

Helen said...

Hi, Now I will be looking for posts and comments Post Adrenalectomy. I had my surgery 25th June and am just now starting to manage without so much pain medication. I sleep a lot, but feel my energy is starting to improve, and the brain fog is definitely gone.
A J Tundras' description of the experience bought me to tears as I read it, because that was exactly me and my experience - very well put. However, on medication I became worse and became a hermit.
Already I feel quite positive about my life and the changes ahead.
Thank you everyone who shares on this blog
Helen

Unknown said...

Carole,
Glad you are recovering well from your adrenalectomy and thank you for all the great information on your journey with this blog. Looking at your older posts, I could not find info on results of your CT scan. Did they ever estimate how big your adenoma was? Did you ever get an MRI done (I heard they showed more).

Flower Spy said...

G Gillen-

I had an MRI to follow up what was found on the CT scan. I am checking on the size, can't remember. I am posting a link to a tv interview I did discussing Conn's. Hope you are feeling better!

Unknown said...

Carole,
Just had my surgery on Monday 10/25 at NIH. There were some complications so I was under for 3 hours which added to my bloating. Oddly enough, my pain has been in my shoulders for about 3-4 days, though it is slowly getting better.

Potassium was up and down but they believe it will normalize. BP w/o meds a little high, so we'll have to see where it settles and if I can go off meds or not. Are you completely off BP meds?

Anyways, just wanted to mention the surprising shoulder pain (some times intense) to anyone who reads comments. Tylenol at home helps.

Hopefully the rest of my recovery will go OK.

wheelchairs said...

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Anonymous said...

Just a note on the shoulder pain, the gas pumped in for the laproscope version rises to the shoulder area after surgery. I'm 5weeks post op. Pain after surgery more than expected. BP meds stopped after surgery. Night sweats, fast pulse rate at odd times first week out. BP not yet settled but normal most of the time.

ps said...

I'm a practicing physician who had uncontrolled hypertension due to an aldosterone producing adenoma.
Initially the hypertension was attributed to just genetics. A visit to the emergency room due to a symptomatic cardiac arryhthmias with unexplained very low blood potassium level, prompted an imaging showing left adrenal adenoma.

Aside from uncontrolled hypertension, my other symptoms are 4-5 visits to the bathroom at night due to high dose potassium supplements. Potassium irritates your bladder makes you go more(not actually a prostate issue which was thought initially).This also made me drinks a lot and pee a lot (so sounds like diabetes but not), easy fatigability and muscle aches when potassium drops.

Initially, I tried a medical apporach by taking Aldactone(an aldosterone antagonist.The Aldactone works well so I thought my problem is solved. But the drug was deleterious to my kidney function. Since the aldactone works, the issue now is confirmed that it is the adenoma that's causing all my symptoms.

On May 1, 2012, I decided to have a laparoscopic left adrenalectomy. The adenoma is on the center of the gland so not amenable to an adrenal sparing surgery.

NOW I'm off from ALL my blood pressure meds, no more 3 pills of potassium supplements,(my bp now average 109/70) just occasionally void at night. Big improvement in my quality of life.

Anonymous said...

I am so happy to have found this blog! I just had an adrenalectomy 3 days ago to remove a 1 cm tumor from my left adrenal gland. I am 31 years old and never took blood pressure medications before. I've struggled with elevated bp for about 6 years never knowing why. After I had my son 7 months ago my blood pressure skyrocketed and my potassium dropped and that led to my Conn's discovery.

After the surgery my blood pressure went down a lot. But gradually it came up and is really high again. Could this just be my right adrenal learning to take over? Is this common? I'm a little discouraged thinking it didn't work.

Anonymous said...

Thanks so much for your site! I was diagnosed with Conn's recently, and will probably undergo the surgery. I think I've felt little to no effects of the Conn's, although it caused high blood pressure and hypokalemia. Perhaps fatigue, and extended muscle soreness after working out, but that's hard to quantify. I'm currently on medication that has gotten my potassium up, and I do notice less fatigue (could it be placebo effect?). I have seen a reduction in thirst since I've been medicated. I'll be excited to see the results after the surgery. Thanks again for the heads up!
Bobby

Anonymous said...

I had my surgery Aug 9th 2012, i was recovering great until yesterday when my 2yr old ran out until the middle of the street so my first instinct was to run and grab him. Bad very bad move since then i feel like i tore something inside. Has anyone felt tugging inside?

Unknown said...

I had surgery sept 6 on my right adrenal to treat conns. I had a 3 cm nodule. I am a 29 year old female that was looking to have kids. I went in for a check up and the doc told mr if i got pregnant that me and my baby would die. That was about a year ago . I was finally diagnosed after doing a Lot of my own research and navigating doctors at kaiser. Surgery went well and I stayed in the hospital 2 days. I may be a wuss but I was pretty much bed ridden for about 7 days. I took peecocet every 4 to 6 hours, slept a lot and needed help in and out of bed cause my muscles were do sore. I finally got off pain killers cause I got constipated and couldn't handle that anymore . Lol . So it's been about 3 weeks and my blood pressure is normal. I still on a low dose of bp medication though. I am experiencing a numb feeling where I assume the adrenal gland was, it burns to the left of it. Andy incisions are very irritated by my clothes . So I have been walking around my house with my shirt pulled up do it doesn't bother them. Don't know how that's going to play out once I go to work next week! I kinda feel like asking for more time off,,, we will see. Feel free to email me with any questions about my experience. Cheers Amberwoods@gmail.com

Anonymous said...

Thank you Thank you Thank you for your post. I thought I was crazy. I'm having my left adrenal removed tomorrow. It has been a looooong 2and1/2 years. One trip to the emergency room one night and one DR who finally listened found my diagnosis. I can't imagine my life after this if this surgery fixes me!

Unknown said...

Help....I had my surgery last week, flew to Tucson directly after due to my husband!s work. Sitting in hotel room, alone from Monday to Friday ...I feel horrible. I never really have had pain. I just feel like my other adrenal hasn't kicked in. I have yet to be seen by my doctor post op. I am scared. My husband is a doctor and he has me on the exact same medication. I still feel weak, cramps in legs, just not right?

KatiePHA said...

Thanks so much for your website, I'm suspected of having Conn's I've got a left adrenal adenoma. I'm just waiting for another AVS to confirm it (my first AVS was a disaster). Having my second AVS on 7th of feb next week :) I am a recluse and I no longer really enjoy anything like I used to. This brain fog is so frustrating. I hope I am eligible for surgery and if I am and all it does is take away the peeing and the brain fog and the bloating I'll be happy :) I also have a blog about hyperaldosteronism. Please feel free to follow me on it (anyone who reads this is most welcome). I want to raise awareness and change the medical symptoms definition. Anyway my blog is found at thehyperaldosteronismblog.wordpress.com

Flower Spy said...

Katie, Thank you for your post and sharing your experiences. My objective with the blog was also to bring awareness to this disease to the medical experts who claim there are not too many side effects--- which is rubbish.

I hope surgery becomes an option for you as I truly feel it is the only option for a better, healthier life. I am Conn's free for 9 years, no brain fog, only bloating was from gluten, which I eliminated. I do tire extremely easily from stress and have to be very careful as living with one adrenal is like having auto immune disease-- you must take very good care of yourself. But it is just a better life than all of the drugs and testing, brain fog and depression. I wish you the best! Your blog is awesome. Keep us posted on your journey here and I will check on your blog too.