MALS, FMD and possibly POTS

Posted by jayhawk57 @jayhawk57, Sep 27 2:06pm

Hello! I was diagnosed with FMD in renal artery which has left me with one kidney 19 years ago and carotid artery 2 years ago. In 2013 had surgery for MALS. I have been recently in hospital again and doctors think I have POTS. I’m having issues with fluid retention, irregular HR at times, hard time getting my breath and malnutrition because I can’t eat much. They said CT scan showed mild stenosis in my celiac artery. Can you get MALS again? I’m struggling. Again, I just do not know what to do or next step to take if any. Thanks! Blessings 🙂

Hi @jayhawk57, I extended the title of this discussion to differentiate it from the other discussion about MALS here:
– Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

That's quite a number of acronyms FMD (fibromuscular dysplasia), MALS (median arcuate ligament syndrome) and now POTS (postural orthostatic tachycardia syndrome)

I'd like to invite fellow members @astaingegerdm @kariulrich @fmdadvocate @iagrrl @jmmb @elle1233 @ukmalsman @fourof5zs and @azurite into this discussion in the hopes that they may have some thoughts on your situation.

In the meantime, you might also be interested in these related discussions:
– Fibromuscular dysplasia (FMD) https://connect.mayoclinic.org/discussion/discussion-fmd/
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Jayhawk, have you had the POTS diagnosis confirmed perhaps with a tilt table test?

REPLY

@jayhawk57 – You seem very miserable now- I’m sorry! It is confusing in your situation where you have more than one vascular issue.
I have had/have MALS- I was finally diagnosed 5 years ago after years of pain. My delay in being diagnosed was probably due to several confusing GI issues.
You ask if one could get MALS again. In a way- yes.
If the MALS surgery did not completely restore blood flow in the celiac artery, symptoms can return.
In my case, the celiac artery was quite a bit indented by the pressure of the ligament and symptoms returned. After placement of a stent it has opened enough.
I think your next step would be to see a vascular surgeon. They will be able to better define the extent of the stenosis and decide if something should be done.
FMD can also occur in arteries in the gastrointestinal system – probably less likely for you.

REPLY
@colleenyoung

Hi @jayhawk57, I extended the title of this discussion to differentiate it from the other discussion about MALS here:
– Median Arcuate Ligament Syndrome (MALS) https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

That's quite a number of acronyms FMD (fibromuscular dysplasia), MALS (median arcuate ligament syndrome) and now POTS (postural orthostatic tachycardia syndrome)

I'd like to invite fellow members @astaingegerdm @kariulrich @fmdadvocate @iagrrl @jmmb @elle1233 @ukmalsman @fourof5zs and @azurite into this discussion in the hopes that they may have some thoughts on your situation.

In the meantime, you might also be interested in these related discussions:
– Fibromuscular dysplasia (FMD) https://connect.mayoclinic.org/discussion/discussion-fmd/
– POTS – postural orthostatic tachycardia syndrome https://connect.mayoclinic.org/discussion/pots-postural-orthostatic-tachycardia-syndrome/

Jayhawk, have you had the POTS diagnosis confirmed perhaps with a tilt table test?

Jump to this post

Thank you Coleen for reaching out, I appreciate your reply. Have a blessed week.

REPLY
@astaingegerdm

@jayhawk57 – You seem very miserable now- I’m sorry! It is confusing in your situation where you have more than one vascular issue.
I have had/have MALS- I was finally diagnosed 5 years ago after years of pain. My delay in being diagnosed was probably due to several confusing GI issues.
You ask if one could get MALS again. In a way- yes.
If the MALS surgery did not completely restore blood flow in the celiac artery, symptoms can return.
In my case, the celiac artery was quite a bit indented by the pressure of the ligament and symptoms returned. After placement of a stent it has opened enough.
I think your next step would be to see a vascular surgeon. They will be able to better define the extent of the stenosis and decide if something should be done.
FMD can also occur in arteries in the gastrointestinal system – probably less likely for you.

Jump to this post

Thank you for reaching out and sharing your story. I appreciate it. God Bless

REPLY
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