Disclaimer – The following post is not intended to diagnose, treat, or cure any disease or sickness. Please use caution if any parts apply to your specific situation and contact a health care professional for further advice.
Hello everyone! Thanks for tuning in. I have updated the Treatments page so check that out if you are curious or interested in some POTS recovery options I have tried. As always remember to follow and share!
Part 1 –
When I got back from the Mayo Clinic I once again found myself in a tough situation. Although I now had a formal diagnosis of POTS, what I didn’t have was a useful treatment plan. I was still suffering from every one of my symptoms. Headache was still constantly there with accompanying head pressure. My stomach pain was just as severe as it had ever been. No matter how many times I was told by doctors that I was not going to die from this, I convinced myself that they had missed something and I was in serious medical trouble.
I was diagnosed with idiopathic POTS. Which means WHY I had/have POTS was not known. They theorized that it was due to a virus I had gotten just prior to developing this syndrome, combined with genetics, environmental factors, etc. But they couldn’t be sure. Doing some in depth research on POTS, you will discover that there are billions of reasons why someone could develop POTS (slight exaggeration). Since we didn’t know the cause, our only option was to treat and try to control the symptoms, and unfortunately there was no good playbook to follow. Regardless, the options I was currently trying were not helping and I was still desperate for pain relief.
Rachel and I also finally had a conversation about our future. Through unbelievable patience, mercy, and grace, Rachel decided “POTS boy” was who she wanted to marry and spend the rest of her life with. This meant the wedding was on!!! The wedding date was set for October, so we had the rest of summer to try and get my symptoms under control, plan a wedding, and try to figure out what our lives were going to look like going forward. *Side note – Rachel and I did pre-marital counseling with the pastor that married us, but what she and I went through for nine months leading up to the wedding was like a pre-marriage boot camp.*
The story takes a real interesting twist at this point. After a month of getting nowhere productive with my pain relief, I stumbled upon a new path to try. Below is a post from July 2016 on my Facebook page. Enter the MALS journey.
Hey all quick status update on my health. So just a refresh, I went to Mayo Clinic and was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). They couldn’t figure out why I have it, but they gave me some suggestions on how to make it better. Meds, salt, fluid increase, exercise, cool stuff like that. I have two main symptoms that they said may or may not be related to POTs, and that is a never ending headache (and some painful pressure issues in my eyes and ears), and upper abdominal pain (especially after eating). Well I have been trying all these possible solutions to help the POTs, but am not seeing much improvement in the pain. The heart rate actually improved quite a bit with the beta blocker and exercise.
Anyways, one night I was on Google earning my medical degree, and I typed in “upper abdominal pain and POTS”. About 3 pages in I stumbled upon a condition called “Median Arcuate Ligament Syndrome (MALS)” that was showing up in a subset of patients with POTs. Basically it is where a ligament is compressing the celiac artery that supplies your stomach with blood. Some smart doctors over on the east coast were finding success in treating these POTS patients who also have MALS with a surgery to release this ligament. It’s a controversial surgery because doctors argue whether or not this condition exists because the stomach has other arteries than can supply it with blood, and on paper it doesn’t make much sense why patients would get so much relief from their GI and Pots issues from fixing this compression. But regardless a lot of good stuff is coming from this surgery.
So being Dr. Gunning (Google M.D.) I looked at a CT scan of my abdomen that I had done at Mayo. And sure enough I read in the report “mild impression of the celiac artery at the median arcuate ligament”. Interesting I thought…..no one at Mayo mentioned this to me. So I took the ct scan in to my PCP (who still hasn’t given up on me thank the Lord), and said what is this and have you ever seen that written on a ct scan. He said I have never seen that written, and I have no idea what that means. So he made a phone call down to the mayo clinic to investigate.
The next day I get a phone call from my PCP saying he has scheduled me for an ultrasound of my stomach because I might have MALS. I have the ultrasound and sure enough the velocities measured in my celiac artery were pretty high and “suggestive of median arcuate ligament syndrome”. I have read online you should be around 100cm/sec and the Wikipedia link to MALS says that 200cm/sec is considered suggestive of MALS. My level is 296 cm/sec.
So my PCP calls me and says he talked to three surgeons in spokane before finding one doctor who has done the surgery one time and it wasn’t successful in relieving the patients symptoms. And I met with that surgeon this afternoon. He says my case is different than the last person he did it on because my ultrasound levels are drastically different, and he definitely recommends I have the surgery done. He says he is more than willing to do the surgery, however he says it might be best to first see if there is a surgeon in Seattle who has done more of these operations. Or anywhere in the country for that matter, although things could be tough getting insurance to cover it.
So that’s what’s new. Eventually I will be having an operation to release a ligament and scar tissue from compressing an artery in my upper abdomen as well as possibly cutting off some of the nerves there. I don’t know if it will help. I don’t know what symptoms it could be causing. But it’s worth a shot and all I really want to be able to do is dance at my wedding
Shortly after writing the above post, I got an appointment scheduled with a surgeon at the University of Washington to look into my condition. I joined a support group online for Median Arcuate Ligament Syndrome and that is where I found out about this doctor who had done about 20 MALS surgeries. After reviewing my scans and medical records, they agreed to see me in August for a consultation.
Emotions were running high. My wedding was only a couple months away and now I had a potentially life altering surgery coming up in the near future. I was excited at the thought of FINALLY getting relief (for the 100th time). I still was not relying on God for my well-being and it was not helping my anxiety and depression levels. For the first time in my life I had to miss Hoopfest (a 3 on 3 basketball tournament in Spokane, the world’s largest). I missed my friends. I missed having a quality of life.
To be continued…..
Part 2 – Wrong to say something is Wrong.
WARNING – UNPOPULAR OPINIONS MAY FOLLOW
I have been reading a book called “Play the Man” by Mark Batterson. It is about being a Christian male in today’s society and “becoming the man God created you to be”. One of the chapters discusses standing up for what you believe in, “even if you’re standing alone. This idea that we need to do what is right even if it means being an outcast is one that is being lost.
Mark writes, “We live in a culture where it is wrong to say something is wrong”. I couldn’t agree more with this. We live in a culture where we are so afraid of offending others that we compromise our own moral and spiritual beliefs. Jesus calls us to show love to every person in this world, but that does not mean allowing behaviors that are against God’s desire for us.
I won’t get into many specifics, but one example I am struggling with is this philosophy that children should be able to “choose” what gender they are. The Bible makes it very clear that we are created in His image, MALE and FEMALE. I take two things from this. One – that we are CREATED. We are not given the CHOICE. And Two – MALE and FEMALE. There are only two options. You are either a boy or a girl. God created gender roles for a reason (although I also believe we cannot let ourselves get brain washed into thinking certain aspects of life fall into either male or female gender roles. Lots of tasks, responsibilities, duties, etc. should fall onto the plates of both men and women).
*Let me very clear that I am a full supporter in gender equality. I think our society still has a long ways to go before we will be able to say women are treated the same as men in business, sports, etc. I have seen firsthand the unfortunate (and quite frankly appalling) unequal treatment towards women in this world. There is no excuse nor any room for that in God’s kingdom.*
I also am firm believer in science, and I am not completely ignorant in acknowledging the fact that there are some biologically and anatomically challenging cases where “Male” and “Female” are not so easily distinguished. What about these cases? Show love. I don’t know about these situations and the matter of the fact is that no one ever will. But for most cases, God decides if you are a man or if you are a woman.
My reason for sharing this example and my own personal views on this issue is that they go AGAINST what our culture says is ok to believe. By expressing my beliefs that the movement towards teaching single gender views and identity choices is wrong, society tells me I AM WRONG.
Although speaking in a completely different context, Dr. Martin Luther King Jr. once said “It may well be that we will have to repent in this generation. Not merely for the vitriolic words and the violent actions of the bad people, but for the appalling silence and indifference of the good people who sit around and say, “Wait on time.” I think this can be applied here. Will a blog post about any specific issue make any difference? Probably not. Especially one from a dude with POTS. But what I am learning is sometimes staying quiet on an issue is just as bad as agreeing with a faulty one. We can’t be afraid to stand on an island if that island leads us to Christ.
I love people. It is because I love people that I want the best for each and every one. You are welcome at my house regardless of biological gender, gender identity, race, sexuality, age, spirituality, disability, or any other classification you can come up with (although if you are a Golden State Warriors fan we might have some issues).
Disclaimer- I was not paid or given any product/services for free. This review was made purely from my own will.
Thanks for reading! Be back next week as the POTS saga continues…..
Please contact me for any specific topics, questions you want answered, or reviews you want!
Jarod Gunning – Dude with POTS
P.S Rachel and our neighbor Sam!