Double bypass of superior mesenteric and celiac arteries (I'm new here)

[RiviS7]

I'm new to this group. I live in the United States. About six weeks ago I had a major surgery to put a graft in for my intestinal arteries. The doctor biopsied the arteries, but unfortunately they were not able to say definitively what I have, vasculitis or fibromuscular dysplasia. The FMD doctor suspects that I have a burned out vasculitis, but I don't feel good about this. Is there such a thing as a burned out vasculitis? What does that mean? I'm wondering if anyone here has had intestinal artery blockages. My hepatic artery is also badly stenosed as well as my carotid arteries. I also have an aneurysm in my gastroduoendal artery. I feel very overwhelmed by all this. I'm in my early 40's.

[Hidden]

Hi,

Sorry to hear about your surgery and all the findings. There is a variant of Vasculitis called Takayasu's Arteritis which affects large vessels and can " burn out ". It is very rare and affects mainly women.

Have you ever seen a Rheumatologist who has a special interest in Vasculitis? If not you really need a referral to make sure there is no active disease that needs treated before it causes more damage.

[Hidden in reply to Hidden]

The link to our page on Takayasu's Arteritis ( TAK ). There is a Vascukitis charity in the USA called the Vasculitis Foundation, hopefully they will be able to help you.

vasculitis.org.uk/about-vas...

[PMRpro]

Keys has mentioned Takayashu's but GCA (giant cell arteritis) is a vasculitis which can also burn out and can also affect the large arteries including the abdominal arteries. It can also happen in younger patients although often it is classified as Takayashu's when it is found in patients under 50. Some experts believe they are the same illness - but with different phenotypes which has led to them being perceived as different in the past.

However, the vasculitis is believed to be caused by an underlying autoimmune disorder that causes your immune system to attack the vessel walls by mistake and cause inflammation. The inflammation can cause varying amounts of damage to the vessel walls which often remains visible later. The autoimmune part of the disease can "burn out" and go into remission - so the continuing damage stops but the existing damage remains.

[RiviS7]

Thanks everyone for the quick replies. I am going to the Cleveland Clinic for checkups because I had my surgery done there. The Cleveland Clinic is an excellent hospital. I did have a appointment about a year ago in the vasculitis center and they thought I did not have vasculitis and referred me to the fibromuscular dysplasia center. This has been a long process. I had a angio-Ct of abdomen and an MRA of neck and brain. The doctor in the FMD clinic felt it wasn't FMD but vasculitis, so it is confusing. At some points in the last two or three years my ESR was 68, 26, but nothing higher. I had all these symptoms that didn't seem to connect at all: headaches, dizziness, extreme fatigue and a papilledema in one eye. Then about two years later, abdominal issues and extreme fatigue.

The surgeon mentioned Takayashu's, but I had just never heard that it could burn out. I thought it is something that has to be constantly monitored. I'm so afraid I will get this again or that it is not gone, just smoldering until another flare. I guess there can be some overlap with fibromuscular dysplasia. It's just frustrating because if it is some kind of vasculitis then the treatment is different from FMD.

Thank you for the website resources. I have been checking them out

[Hidden in reply to RiviS7]

Has anyone ever talked about doing a CT/PET scan as they are the most sensitive in picking up the inflamation in large vessel Vasculitis? The problem is if it is TAK which is still active then the grafts will be at risk. You can have TAK without a raised ESR, have you ever had your CRP checked.

I think I would be insisting on a CT/PET and some answers, it sounds like you are being passed from one Dr to the other but no one knows for sure what the answer is!

[Hidden in reply to Hidden]

ncbi.nlm.nih.gov/pmc/articl...

Some info on CT/PET and large vessel Vasculitis.

[RiviS7]

Thank you Keyes. They did send the biopsy of arteries to find out what it was, but the arteries were so damaged. My CRP been checked a few times and was never really high, but I think they checked ESR more than CRP. I had too many catscans in the last 6 months that I would hate to have a PET on top of that. The last few catscans showed no more inflammation or damage other than what was already there before the surgery. I'm still not sure if it is FMD, but the intimal kind, that is rare too. That's harder to detect too unfortunately. I do feel confident of the doctors at Cleveland. I just never heard that some vasculitis could be burned out. I sure hope that is the case with me. The doctors said I will have to be monitored with C. T. angiograms and MRA's. I have a rheumatologist locally that will probably be checking my blood work too. I have to go for a check up tomorrow at Cleveland. I should know more then. Hopefully I can go because the weather is really bad here right now

Thanks again for the link.

Rivi

[BronteM]

It sounds as though you have been really turned upside down, poor you. I have Takayasus - it depends a little on the consultant whether they call it that so I tend to call it Large Vessel Vasculitis. But my original diagnosis was Takayasus and the symptoms have always matched everything I read, including no pulses in my arms or shoulders and extensive scarring in the arteries of my upper body. Surgery to fit stents in the worst blockages has been mentioned, but at the moment that is on hold.

As Keyes has said, the most sensitive scan is the PET one, and that was the one that confirmed my diagnosis....MRAs are now being used every couple of years to monitor my progress. Also, my ESR and CRP have never been particularly raised, and the clinic that I go to say that the changes in my bloods are very subtle and it is the long term trend that is more important. I believe that is also typical of TAK.

I recognise your extreme fatigue, dizziness and eye problems though not the headaches as I've not had any. Do you have problems with claudication, pain in your muscles caused by lack of oxygen because of the blockages? I have it in my arms and shoulders and across my back whenever I try to do something like wash my hair, hang out the washing or write on a flip chart. You may be feeling it in your abdomen? It's easy to have it misdiagnosed as fibromyalgia, as I did for two or three years.

Not sure about the burn out, as I've not got there, though I have been told that it could settle down and cause fewer problems. Good luck, I hope you get some clear answers soon and start to feel a bit better.

[RiviS7]

Thanks BronteM for your response.

I'm sorry you have TAK and I hope yours will go into remission. I do get like kind of cramps in my legs sometimes and sometimes my one leg goes cold like ice. My husband couldn't

believe it when he felt my leg. The one was warm and the other one like ice. I also have a lot of pain in hips and back.

At my doctor visits they listen for bruits but have never heard them and my pulse seems good in arms. Would you have to be in a flare for a petscan tto pick up TAK?

Thank you for sharing your experience. It really helps to connect with people who understand how hard it is to have artery disease or inflammatory disease.

[BronteM in reply to RiviS7]

Forgot to mention the bruits-mine are in my shoulders and the top of my back. When I was first diagnosed there were regular knocks on my door as medical students came in and asked to listen to them!

Cramp in my legs is worst at night too, when it can start in my toes and go all the way up to my thighs, and my husband has learnt to cope with my temperature swings. One minute I'm grabbing for extra duvet, and the next I'm throwing it off and sleeping without it because I'm so hot! But it's all over, not in one leg rather than the other...interesting?

The problem with something like TAK is that no one person has all the symptoms and some add in extra ones from other types of Vasculitis. So diagnosis is a matter of experience on the part of your clinician and can take some time. It looks to me as though you need to find another opinion, if that is possible. One thing though, treatment is much the same for all types of Vasculitis, so the name is really less important than whether you get the right drugs - and that they work.

[Hidden]

I think Its takayasu arteritis in remission.

[MattC13]

Hi I too am worried about vasculitis effecting my arteries in my abdomen. I also get headaches, pulsatile tinnitus, sinus pressure with constant stuffy nose,TMJ issues, pain in my hands with very visible veins and green blisters on my fingertips, weight loss (35 pounds) and several other weird symptoms. I have had the dreaded fibro label by some of my doctors which makes getting a diagnosis nearly impossible. They seem to be blaming everything on fibromyalgia even though I have inflammation in my GI. I have had 2 MRA's along with several CT scans and an MRI. All of it has came back normal. My bloods are normal other then elevated liver enzymes. Hope you get a diagnosis soon. I don't wish the process of being diagnosed on anyone.