Nutcracker Syndrome (Pelvic Congestion Syndrome) – Linked with POTS and childhood CFS

[kangaSue]

I've had blood showing up in urine tests for last two or so yrs although Noone is ever concerned about it. Believe me I have asked.

My mum also tells me when I was 2 or 3 yrs old she would take me to hospital cos I wold get very hot and have pre-convulsions... I never knew that only finding out since I came down with this suspected autonomic syndrome..

It's common to have blood showing up in the urine tests if you have frequent UTI's. Paradoxically, I often get minor UTI's but seldom have any sign of blood in the urine tests.

Have you had any CT of the abdomen that commented on finding enlarged pelvic or ovarian veins?

 

[Kenjie]

No

It's common to have blood showing up in the urine tests if you have frequent UTI's. Paradoxically, I often get minor UTI's but seldom have any sign of blood in the urine tests.

Have you had any CT of the abdomen that commented on finding enlarged pelvic or ovarian veins?

I've not had any extensive CT scans on any areas of my body other than my forehead sinuses which showed debris in my sinuses. I am getting a second opinion on this soon too. End of June can't come any quicker lol.

And I have enlarged blood vessels in my eyes.

On the blood in urine this still occurs even st the abscene of infection.

 

[pattismith]

I just read that there may be a link between Nutcracker syndrome and dysmenorrea...

 

[kangaSue]

I just read that there may be a link between Nutcracker syndrome and dysmenorrea...

It can be one of the many symptoms, definitely one I have had too.

An interesting hypothesis on "midline organ congestion" suggests aspirin alone to be beneficial. Not something I can tolerate unfortunately.
https://www.ncbi.nlm.nih.gov/pubmed/17161550

 

[kangaSue]

There's very little in the way of case studies into adults with CFS and Nutcracker Syndrome in the medical literature, here's a recent one I came across;

A Tough Nut to Crack: Chronic Fatigue Syndrome and Abdominal Pain Attributed to Nutcracker Syndrome
http://oatext.com/A-Tough-Nut-to-Cr...al-Pain-Attributed-to-Nutcracker-Syndrome.php

 

[Pendergast]

I have only seen a couple of meds suggested as a treatment for this, nicorandil, a cardiac anti-anginal nitrate which I use, or cilostazol which is another type of peripheral artery vasodilator used for Intermittant Claudication.

My doc just suggested me to try some Nitroglycerine patch or Cilostazol to see if my epigastric symptoms improve thus indicating some arterial problem, I think?

Also, yesterday I found this blog of a girl who found out having some vascular compression syndromes. In this entry, a friend of her talks about another compression syndrome he had (May-Thurner Syndrome) and that provoked him Chronic Fatigue, Cognitive issues and other symptoms:

VASCULAR COMPRESSION SYNDROMES:
A LIKELY CAUSE OF CHRONIC FATIGUE SYNDROME

https://undiagnosedwarrior.org/2017/04/29/guest-feature-jims-story/

So we have a lot of stuff here:

- Wilkie´s Syndrome ( or Superior Mesenteric Artery Syndrome).
- Nutcracker Syndrome ( or Renal Vein Entrapment).
- Dunbar Syndrome (or Median Arcuate Ligament Syndrome).
- May - Thurner Syndrome ( or Iliac Vein Compression Syndrome).



And all have some things in common if I´m right (many times I´m not ):

- Difficult to diagnose.
- Even if present, difficult to know if they are provoking symptoms.
- If they provoke symptoms, they can be "not typical" ones.
- They can mimicry some CFS symptoms.

But I think (and this is only my personal opinion), that the symptoms they provoke, even if could be similar to CFS in some cases, are not so "flu-like / unbearable fatigue / PEM".... so it´s difficult to explain a well diagnosed CFS/ME with them.... but who knows?

I want my doc to discard them all but I can see the face he will put: . I will try at least the Nitroglycerine / Cilostazol and see what happens, although I am a little afraid of every new drug...

Greetings!

 

[pattismith]

My doc just suggested me to try some Nitroglycerine patch or Cilostazol to see if my epigastric symptoms improve thus indicating some arterial problem, I think?

Also, yesterday I found this blog of a girl who found out having some vascular compression syndromes. In this entry, a friend of her talks about another compression syndrome he had (May-Thurner Syndrome) and that provoked him Chronic Fatigue, Cognitive issues and other symptoms:

VASCULAR COMPRESSION SYNDROMES:
A LIKELY CAUSE OF CHRONIC FATIGUE SYNDROME

https://undiagnosedwarrior.org/2017/04/29/guest-feature-jims-story/

So we have a lot of stuff here:

- Wilkie´s Syndrome ( or Superior Mesenteric Artery Syndrome).
- Nutcrkacker Syndrome ( or Renal Vein Entrapment).
- Dunbar Syndrome (or Median Arcuate Ligament Syndrome).
- May - Thurner Syndrome ( or Iliac Vein Compression Syndrome).



And all have some things in common if I´m right (many times I´m not ):

- Difficult to diagnose.
- Even if present, difficult to know if they are provoking symptoms.
- If they provoke symptoms, they can be "not typical" ones.
- They can mimicry some CFS symptoms.

But I think (and this is only my personal opinion), that the symptoms they provoke, even if could be similar to CFS in some cases, are not so "flu-like / unbearable fatigue / PEM".... so it´s difficult to explain a well diagnosed CFS/ME with them.... but who knows?

I want my doc to discard them all but I can see the face he will put: . I will try at least the Nitroglycerine / Cilostazol and see what happens, although I am a little afraid of every new medicine...

Greetings!

In my case, I believe that abdominal vascular compression is part of my disease, with an association to postprandial fatigue and discomfort, and brain fog, and orthostatic intolerance....(and maybe Dysmenorrhea)
But I'm convinced that many other of my symptoms were from a different origin...For example my vertebral pains disappeared when I followed a long antibiotic treatment, and my muscle pains went away after adding supplements to my diet....

So the picture is never simple and it is very difficult to know really the relationship between all these problems.

I wonder if these chronic vascular compression in the abdomen may have an influence on gut function, gut microbiome, which may have in return disastrous effects in our whole body....So much to learn!

 

[kangaSue]

My doc just suggested me to try some Nitroglycerine patch or Cilostazol to see if my epigastric symptoms improve thus indicating some arterial problem, I think?

I have tried isosorbide or nitro patches both alone and in combination with nicorandil but of all the combo's, nicorandil alone is best. It has some unique properties not found in other nitrates too.

Given a choice between a nitro patch and cilostazol, I would choose cilostazol.

But I think (and this is only my personal opinion), that the symptoms they provoke, even if could be similar to CFS in some cases, are not so "flu-like / unbearable fatigue / PEM".... so it´s difficult to explain a well diagnosed CFS/ME with them.... but who knows?

Dropping weight accounts for many compression syndromes cases when there is a corresponding loss of the retroperitoneal fat pad that cushions the various structures so it's possible to become a co-morbidity along with CFS at least when that results in a reduced calorie intake over time.

 

[kangaSue]

I wonder if these chronic vascular compression in the abdomen may have an influence on gut function, gut microbiome, which may have in return disastrous effects in our whole body....So much to learn!

Definitely yes to influencing gut function. All the literature reports that SMA Syndrome and MALS causes intestinal ischemia. This in turns kills off the interstsitial cells of Cajal (ICC) in the stomach pacemaker centre and in the intestinal muscle structures from hypoxia which leads to reduced GI motility.

A hypoxic gut environment has to affect the microbiome to some degree with an alteration in the balance of aerobic and anaerobic bacterial species.

One of the biggest pathology findings in idiopathic gastroparesis is a significantly reduced numbers of ICC.

 

[kangaSue]

Talk about the difference a doctor can make. I've now seen 2 different Vascualr Surgeons for Nutcracker Syndrome, both reviewing the same imaging and Ultrasound test results. One says all the information he needs is there and no, nothing to worry about or anything he can do and there's no connection with the GI dysmotility or autonomic issues. The other guy says there is still not enough information to hand and needs to repeat the Doppler Ultrasound to start with as a CTA (or MRA) only shows that there is the right anatomical connections but not the direction in which blood is flowing. He also wants the U/S done in both a standing and laying position (which is the correct procedure but not been done on me that way yet) and when the results came back, suddenly there's six surgical options on the table for me to consider, most being a fairly major slice and dice affair.

Checking out the various options, the procedure with the least complication rates is to shift the left kidney down lower into the the pelvis, something called auto transplantation!

Something that I've learned along the way is that when you're upright, it can increase the compression between the SMA artery and left renal vein, especially if you have a "floating kidney" (renal ptosis) where the kidney can drop down a little in standing so in those with POTS too (and I have come across a fair number of them in different forums),this can explain the worsening of symptoms some POTsies get the longer they are on their feet.