Jump to content

Dx With Something Very Interesting


DIXZELAND
 Share

Recommended Posts

Hello, I've been dealing with POTS since Nov.2009. I have had every test known to man, so I thought. I have had two cardiologist confirm I have POTS. Lately, if you've read my recent posts, my bp and hr are way way up there with no relief from my medications. So yesterday while at my POTS dr. he said "Lets do a Renal Artery Ultra Sound". So I did in his office. And guess what????? My right Renal Artery is 80% blocked! Renal Artery Stenosis causes high bp. Now he said you may NOT have had POTS or this could be a secondary incidence. I go for a MRA which will tell them just how blocked it really is. And then the surgery to place the stent in the blocked artery. Did I tell you how HAPPY I am to have found something that might be the problem to my high bp, hr, nausea, palpitations and confusion???

I am 48 years of age. I will tell you while I am happy, it is bitter sweet. I am scared at the same time. But this kinda gives me some hope of getting relief.

Just wanted to put this out there for any others whom like myself couldn't find a drug that would help with the high bp and hr.

((hugs to all))

Dixie

Link to comment
Share on other sites

Well, it's just that we had talked of Nutcracker Syndrome sometime around last summer. It has to do with compression of the LEFT renal VEIN. I just thought if it was on the left, maybe it could be "connected" to the few that were finding Nutcracker related to their POTS.

Link to comment
Share on other sites

Well, it's just that we had talked of Nutcracker Syndrome sometime around last summer. It has to do with compression of the LEFT renal VEIN. I just thought if it was on the left, maybe it could be "connected" to the few that were finding Nutcracker related to their POTS.

Thanks for reading my post Sue. I just want to help others to have this test as it could also be going on with them and they don't know it. I am in a wheelchair now to help keep the bp from getting into the 200/100 range. I weigh 118 and for me that high bp gets the best of me. I may have Kidney disease, but its too soon to tell until I see a vascular surgeon.

Link to comment
Share on other sites

So what all were your symptoms besides high blood pressure? And apparently it's just on standing?

I have attached a PubMed article from 1998 talking about MSA and NS. The last paragraph is what really gets me thinking. It mentions that NS can cause splanchnic congestion upon standing, and it seems like we are always reading about "splanchnic pooling" when reading about POTS.

http://www.ncbi.nlm.nih.gov/pubmed/9721569

It kind of makes sense--if we are standing, something like a blockage at the left renal vein would cause pooling. I absolutely know that when I am standing, my abdomen feels like it is blowing up like a balloon! That has been a bad symptom for me with POTS. The sad thing is, I mentioned to my cardiologist about a POTS doctor finding Nutcracker in some of his patients, and he didn't even say a word to address it, much less even entertain the idea. And I brought it up to him because they are cardioVASCULAR doctors. I thought he would address something like that. So, I tried to get a doctor to look at it. Maybe I just need to go see a nephrologist, darnit!

Link to comment
Share on other sites

So what all were your symptoms besides high blood pressure? And apparently it's just on standing?

I have attached a PubMed article from 1998 talking about MSA and NS. The last paragraph is what really gets me thinking. It mentions that NS can cause splanchnic congestion upon standing, and it seems like we are always reading about "splanchnic pooling" when reading about POTS.

http://www.ncbi.nlm.nih.gov/pubmed/9721569

It kind of makes sense--if we are standing, something like a blockage at the left renal vein would cause pooling. I absolutely know that when I am standing, my abdomen feels like it is blowing up like a balloon! That has been a bad symptom for me with POTS. The sad thing is, I mentioned to my cardiologist about a POTS doctor finding Nutcracker in some of his patients, and he didn't even say a word to address it, much less even entertain the idea. And I brought it up to him because they are cardioVASCULAR doctors. I thought he would address something like that. So, I tried to get a doctor to look at it. Maybe I just need to go see a nephrologist, darnit!

High bp upon sitting upright and standing. High hr as well as sitting upright and standing. Symptoms of these are better or normal upon laying down. I get confused when the bp is past the 150/99's. I get nausea and anxiety. I sometimes have trouble eating as even a small meal makes me feel like it just "sits" in my stomach and doesn't digest. I was told that a Vascular surgeon would do the stent placement. So if you are interested in getting tested look for this type of specialist. I do have a nephrologist because I have Hematuria. I've had IVP's, Kidney Ultra Sound but everything was normal. So I don't have an answer to this.

Good luck and I hope you find someone to test you for what I have found.

Link to comment
Share on other sites

I was reading some of your old posts, and I see where I talked to you about having the same symptoms and issues: not being able to go shopping, and just in general, hanging around the house because doing anything just exacerbates the b/p and heart rate.

I was thinking. Most of us are way worse if we have to stand in one place. I last longer if I can move around--that's not to say I can last alot longer, just longer. Standing in one place has to be the ABSOLUTE worst thing for us.

Sooo, thinking about compression of the artery and/or vein(and I am talking about us POTS people, not ordinary people!), whether of the MSA or NS, wouldn't it make sense that standing still would completely block it? That would cause almost immediate symptoms.

Then, if we move around somewhat, doesn't it make sense that moving would "unblock" it with every step, thus letting some blood flow through? That seems like it would "help" the upright situation some, but ultimately, the system is overwhelmed with norepinephrine.

Just thinking. I had read on a celiac board where the many posters in a 3-page topic had either MSA or NS, and most talked about how thin they were. I know alot of people here are tall and thin(not me <_< ), so I can see where this problem could happen more often in the EDS group, and, there are alot of EDS people with POTS. I'm just making the connection here to think about.

Link to comment
Share on other sites

Hey Dixie-

My nephew was Dxed with this at age 2. He began breathing strangely. At the hospital they realized his BP was sky high. The affected kidney had actually shrunk to half the size it should be.

I pray you are correct that your POTS will disappear once this is corrected :rolleyes: Out of curiosity, do you have the typical risk factors for this condition: hardening of the arteries, high cholesterol, high BP (typically- not related to this) cigarette smoking, diabetes? If not, I wonder about less obvious causes like fibromuscular dysplasia, a partial dissection, lots of inflammation in that artery? These causes MAY be related to your POTS and point to an underlying connective tissue disorder.

I also have a brother who had a dissected carotid, and another brother with a perforated aortic aneurysm- lots of autonomic dysfunction in the family too. We are told we have "an unknown connective tissue disorder." I fear you may too.... BUT hope I am wrong!!! Just to be safe, ask for a MRI/MRA of your whole trunk to rule out any other odd vascular phenomenon.

Best of luck with your treatment & please let us know what you find out. Thank you for sharing. This may help many here.

Lots of prayers coming your way-

Julie

Link to comment
Share on other sites

Scary, but great news they found it and it may be something that can be fixed. How great would that be if it resolved your symptoms!! I remember when they 1st found my heart defect I was actually happy maybe they found a cause that could be fixed. Didn't turn out that way for me. Oh well! Keep us posted, thinking of you!!

Brye

Link to comment
Share on other sites

Hello, I've been dealing with POTS since Nov.2009. I have had every test known to man, so I thought. I have had two cardiologist confirm I have POTS. Lately, if you've read my recent posts, my bp and hr are way way up there with no relief from my medications. So yesterday while at my POTS dr. he said "Lets do a Renal Artery Ultra Sound". So I did in his office. And guess what????? My right Renal Artery is 80% blocked! Renal Artery Stenosis causes high bp. Now he said you may NOT have had POTS or this could be a secondary incidence. I go for a MRA which will tell them just how blocked it really is. And then the surgery to place the stent in the blocked artery. Did I tell you how HAPPY I am to have found something that might be the problem to my high bp, hr, nausea, palpitations and confusion???

I am 48 years of age. I will tell you while I am happy, it is bitter sweet. I am scared at the same time. But this kinda gives me some hope of getting relief.

Just wanted to put this out there for any others whom like myself couldn't find a drug that would help with the high bp and hr.

((hugs to all))

Dixie

Thanks for posting...I love hearing stories about people who figure out the cause of their POTS. It gives me some hope to keep searching for myself (I often feel like giving up).

Link to comment
Share on other sites

So, what kind of doctor is your POTS doctor that found this through the ultrasound? I see you mentioned your nephrologist had done an ultrasound, and apparently did not pick up on it.

my POTS/Cardiologist ordered the Renal Artery Ultra Sound yesterday. My Nephrologist had ordered just a plain Ultra Sound of the kidneys because I was having hematuria. I did not have any symptoms of POTS while I was see my Nephrologist a few years ago.

Link to comment
Share on other sites

Hey Dixie-

My nephew was Dxed with this at age 2. He began breathing strangely. At the hospital they realized his BP was sky high. The affected kidney had actually shrunk to half the size it should be.

I pray you are correct that your POTS will disappear once this is corrected :rolleyes: Out of curiosity, do you have the typical risk factors for this condition: hardening of the arteries, high cholesterol, high BP (typically- not related to this) cigarette smoking, diabetes? If not, I wonder about less obvious causes like fibromuscular dysplasia, a partial dissection, lots of inflammation in that artery? These causes MAY be related to your POTS and point to an underlying connective tissue disorder.

I also have a brother who had a dissected carotid, and another brother with a perforated aortic aneurysm- lots of autonomic dysfunction in the family too. We are told we have "an unknown connective tissue disorder." I fear you may too.... BUT hope I am wrong!!! Just to be safe, ask for a MRI/MRA of your whole trunk to rule out any other odd vascular phenomenon.

Best of luck with your treatment & please let us know what you find out. Thank you for sharing. This may help many here.

Lots of prayers coming your way-

Julie

I am adopted so I don't know anything about my family tree. I am not diabetic, don't smoke, never had high bp in my life until that one odd day and then ever since. I have always had a high ANA, but only met 3 of the 4 criteria for having LUPUS. I am so thankful that my POTS/cardiologist is smart enough to have ordered such a test. My prayers to God was that He would give my cardiologist the knowledge to dig deeper into finging why my bp wouldn't respond to medication. And HE did! Thanks for your post:) Dixie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...