View Full Version : Diagnosed. What to do next to mentally prepare?
woaidelrey
16-01-20, 18:45
Hi everyone,
I have had a long history of health anxiety for the last 12 years. I am 28 years old.
Recently I have been having some right upper abdominal pain and then migrated to right lower pain. The pain is very subtle, almost just feels like fullness and pressure. I had a MRI Enterography two days ago because my doctor wanted to rule out Crohn's disease. Yesterday my doctor's office called me and wanted to see me today for a consultation.
So today I saw him. He firstly told me that my intestines and colon seemed ok. Then he told me that the image however showed that I have a artery clogged of which supplies blood to the intestine and other organs. The condition is called celiac artery dissection. Upon research, it is apparently an exceedingly rare disease. He made an urgent referral for me to have a CTA scan tomorrow and to meet a vascular surgeon.
I asked him if this is life threatening, he said not at the moment but he wants to investigate and take care of this as soon as possible.
I am sitting at home right now petrified if there could be other complications as I read that isolated celiac artery dissection is rare and it is usually accompanied by other vascular abnormalities. Vascular abnormalities can be debilitating or even fatal. I am only 28 years old and now I am in this cycle of thinking how long I have to live and how I have to go through many possible interventions in the future and all the treatments that could have negative effects on my body.
How do I mentally prepare? How do I comfort myself that I'm not going to drop dead? Can I still have a normal life without always fearing?
My goodness - you aren't wrong about rare. I'm really sorry to hear you've got this worry at your young age. I looked it up, its major major rare. (like, medical literature handful of cases rare)
Ok, so I can see why you feel terrified and I'm not sure how to say for you to prepare really - but I'll try: One thing I would say is that doctors are certainly NOT in the habit of letting people walk out of their offices if there is a risk to their life (specially not in the US I have heard ;o). Your doctor is acting quickly, very quickly and clearly wants this to have a really good outcome for you hence acting promptly. He knows you are safe at the moment. (Did they give any advice on anything you should/can/shouldn't do before seeing the surgeon?) You clearly have lots of questions, and that is entirely understandable with this frightening and unusual diagnosis, and I would have those questions written out ready for your meeting tomorrow. Its a bit of an 'out of control' feeling after having a medical diagnosis, and a shock, so you can try to use the time productively by noting down everything you need to ask/say tomorrow. I'm sure the surgeon will be able to spend lots of time with you going through everything. I would also suggest taking someone with you to help remember answers and for moral support. As for tonight - do you have people around you to talk with and to support you ?
WiredIncorrectly
16-01-20, 20:29
An interesting study with 22 patients. Recent too. Only 2 died, but they died of cancer not SICAD: https://journals.lww.com/md-journal/fulltext/2018/02020/natural_course_and_outcomes_of_spontaneous.11.aspx
I'm not a professional. But it seems that you're not at risk of dropping down dead put it that way. You'd be in hospital on a ward if you was at that level of risk.
Wishing you wellness and good health god speed!
woaidelrey
17-01-20, 00:18
Thank you guys. I jotted down the questions I want to ask. Tomorrow I'm not meeting with a doctor, I am just going to have a CTA scan of my abdomen. The doctor I met with today did mention that the MR Enterography I had may have been a false positive because it is just so rare and that it is not intended to look at the arteries. I am trying to be extra positive right now praying that it would be a false positive.
What I'm afriad of is that there may be other accompanying complications considering that I am so young and I have artery issues. So I'm praying praying and praying that it is a false positive. I will keep updating. Thanks everyone.
OK, I see, so this is an additional investigation to see if the original possible diagnosis is certain ? That'd be a great outcome if it turned out there was a false positive, but I've learnt myself that its best not to rely on that as your 'mental escape route'. If there are other possible accompanying complications with the rare condition then they will medicate for them and deal with them - and it sure is better to find this out than not find it out when it much further down the line. DO let me know how you get on......best of fortune !!
The advice the other’s have offered has been wonderful. So I can’t really add anything to that. Just wanted you to know I hope it is a false positive as well. Thoughts and prayers going out for you! Please keep us posted. Hang in there! IF it is anything at least they are on top of things and will treat it accordingly. Anxiety can cause all sorts of aches and pains and weird sensations too, so here’s to hoping it is just that! ((((HUGS))))
woaidelrey
17-01-20, 21:08
Thanks guys!!! I went for a CTA of my abdomen today. The technician was so nice. I told him I was so scared. He asked me if it's about the procedure or results. I said both. I was afraid of the repeated contrast may hurt my kidney. I was afraid that result will be something bad. He was so nice and said that he will pray for me that the result will come back negative. That experience definitely made this whole procedure better. When they injected me with the iodine contrast, my whole body felt so hot andy body felt like voiding. It was really weird... Anyways, I just sent an email to my doctor asking him to update me as soon as possible. Usually the hospital gives out results really fast, so I would imagine to hear back next Monday. I am praying and praying that it's nothing serious and it's something I can deal with!
Well done you ! I'm glad you had a nice technician, it can make so much difference can't it.
Oh my goodness. I won't pretend I have any answers to what you are going through right now. Others here have spoken with more wisdom than I could have, but what I can say is that I am thinking of you and hoping with all my heart for a positive outcome.
woaidelrey
20-01-20, 00:15
Tomorrow would be Monday. I can't stop but worrying about the result I may get tomorrow. I am afraid that they will find something even worse. I am not confident in my health lately hence the intense worrying. I am afriad they wi find some more severe form of artery issues or the C word somewhere from the CTA. I am praying that it's something manageable. 🥺
I hope you got some good news , thinking of you
Inanna
woaidelrey
20-01-20, 19:02
Thank you! I am still waiting to hear back from my doctor :(.
Oh what a horrible wait, I pity you. Hang on in there.
woaidelrey
21-01-20, 15:52
SO I got a call from my doctor just now!! Turns out it was a false positive after all from the MRE!!!! He said the CTA is the gold standard for checking blood vessel issues. He said CTA showed that my celiac artery did look different than normal, but he consulted with the chief vascular surgeon and it is apparently a normal variant. So I have nothing to worry about!!! I AM SO RELIEVED and HAPPY!!
Ohhh, awesome! Congratulations!
Wow !!!!!! great news, i cant imagine your relief right now. You'll be needing to catch up on some sleep I guess. :D
Woohoo!
I'm so happy for you... 😃
woaidelrey
22-01-20, 16:54
I know!! I am so relieved... When I got the phone call, the doctor said "well the good news is that you don't have a blockage or dissection". Then I said "what's the bad news"? Lol... He said there is no bad news!! I was just so traumatized that he was going to find something else!!
:yesyes: That's brilliant news!!
Great news, happy for you
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