I rocked up to my Ultrasound not knowing what to expect. I had waited about a week after my Gastro appointment to even book it as it needed to be protocolled due to being a specialist scan. Turns out my sister knows half the radiographers in town so I took a guess and contacted a good friend and yes it was her husband doing the protocolling. I finally got a text and booked in the scan.
It was him doing the scan too! I felt relaxed and in good hands, which you want if you are doing breathing protocols. Not that I get nervous at any of my scans, Ive literally been scanned and tested every-which-way no nothing phases me anymore.
We chatted briefly about why I was here and outcomes of my MRI. He then explained the test and made a start. Straight away he said "...ummm didst take me long to spot the compression... and he turned the screen to show me. Wow that was one thin artery with a bulge at the end.""I can see if without asking you to breath..." he went on to say, so that mad us both think it was permanently damaged? The important part of the test was to measure the PSV (peak systolic velocities) which would tell them the level of compression but they are calling mine stenosis.
After checking my SMA which was the next concern on the list he went on to check my Ovarian Artery after telling him about my pelvic congestion syndrome, and he said it was slightly enlarged, makes totally sense to me.
Here were his findings.
Findings:
Aorta PSV 99cm/s
There is narrowing/compression/kinking of proximal Coeliac axis in
all phases of respiration diameter 3mm. Distal to compression artery
measured 8.6mm., Post similar dilatation
There were increased PSV through this narrowing in all phases of
respiration.
Inspiration PSV 258cm/s
Expiration PSV 329cm/s
SMA diameter 5mm, PSV 160cm/s.
Conclusion:
Pronounced velocity increases through the proximal coeliac artery
with morphology supporting marked stenosis and the previous MRI
suspicion.
Who could have possibly thought... its been MALS all along?
Well 2023, what an eventful year it is going to be, it wasn't till I posted my current diagnosis list on my new FB community group that I realised the gravity of the situation...
GERD (10 nodules and 1 ulcer in my distal esophagus, scar tissue)
Peritoneal Inclusion Cyst
Adhesions on my left ovary (second time)
Moderately Slow Bowel Transit
Intestinal Methanogean Overgrowth (IMO)
Fructose Malabsorption
Mast Cell Activation Syndrome
Postural Orthostatic Tachycardia Syndrome (POTS)
Acrocyanosis
Hypermobile Ehlers-Danlos Syndrome
Fibromyalgia
This is what I have had diagnosed with prior to that in the 9 years after looking into my health pre-IVF:
IBS-C
Endometriosis (deep infitrating on only ureter)
Renal Agenesis
Unicornuate Uterus / Bicournuate Bicollis (they cant decide which it is till I get a Hysterectomy)
Ectopic Right Streak ovary next to my liver
Pelvic Congestion Syndrome
Hydrosalphinx
Scoliosis
Spondolysisthesis
Sciatica
Occular Migraines
Hypothyroidism
Asthma/Hayfever
Systolic Ejection Murmur (congential)
Ive been under a total of 12 specialists, soon to be 13... now adding Vascular to the list next month. 4 gynecologists, 2 gastroenterologists, 1 colorectal surgeon, 1 ortho/spine surgeon, one Hand & Wrist surgeon, 2 Rheumatologists and 1 Urologist.
None of them thought about MALS (possibly soon to be my next diagnosis) or even picked it up on the 20+ scans/xrays/US ive had.
I emailed my EDS specialist physio and she said I was her 10th client to contact her with a compression syndrome. It's very common with hEDS, one of her clients having all 5 compression syndromes. The others of concern for me at the moment are Nutcracker Syndrome and May-Thurner Syndrome, I show symptoms of these and could easily have been dealing with those all my life. I will post more about those after my appointment with the vascular team.
Next update will be a lengthy one...
