New to learn aneurysm risk, appears marfan & other risk factors. Can holistic delay aneurysms?

I know science would have trouble proving any holistic care helps but wonder what patients know of holistic means. I await genetic marfan & other tests but think i've aneurysm, one or more mild i'd suspect. I used have trigeminal neuralgia, max pain a nerve can feel & still get hemiparalysis. I've many rare genetic late diagnosed things doctors missed so I don't have a good care team & was turned down by many places in past. I'm not medically stable for an angiogram i was adviced i needed years ago as i've severe bleed clot history & inflammatory & immune problems. I use mega nutrients that really hold me together beyond words but many rare problems. Where are the better doctors and does holistic care help?

Perhaps a 2nd opinion...I have trigeminal neuralgia, low immune disease and a bleed risk ... Yet I have had many angiograms (even allergic to the dye)...they can use a plug to help with bleed risks...it is important to be your own medical advocate and get more opinions...wishing you the best ~ Colleen

Like Jo stated, it is indeed a blessing to be able to have an aneurysm repaired before a rupture were to take place. The last thing anyone needs is a catastrophe such as that. Holistic care is good for so many ailments, but an aneurysm will likely not be on the top of the list as being one of those ailments.

Why is it you think you have an aneurysm? Peace to you as you get thru this, Janet

Coasting...welcome...I always regret we are not welcoming to an exciting a cruise or golf...

Have you had, do you have, other family members w/the genetic marfan?

What of the other late diagnosed rare genetic issues?

Which ones relate to your severe blood clot history, inflammatory and immune?

there are numerous clot meds...heparin, Plavix and whatever other brand names...do you have, have you had, any of those prescribed?

We have had some other members talk of the clot issue...hope they will see/ respond to you...

My small aneurysm ruptured...I had three emergencies over 29 days...and, saw numerous other docs in between the emergencies...So, I view our medical as common for misdiagnosis...

On 04/16/14, NBC provided: Misdiagnosis: Docs' Mistakes Affect 12 million a Year...

"at least one in every 20 adults who seeks med care in a U.S. ER or community health clinic may walk away w/the wrong diagnosis...per new analysis that estimates that 12 million Americans a year could be affected"... ... by a Hardeep Singh, MD in Orange County...this news off a study published Wednesday in the journal BMJ Quality and Safety... You may want to read that article on NBC...

W/o a doubt, I am a supporter of this article... I do not know if the big hospitals are considered community health clinics...or if they will highly generate these stats...

Prayers you will reach the care level you need...

Pat

In answer to your questions, I have lupus & other autoimmune, common variable immune deficiency & other immune deficient issues, mitochondrial myopathy which is a metabolic form of muscular dystrophy & I self treat for organic academia till I can get to a specialist. I'm thot to have hereditary angioedema triggered by exercise allergy to polysaccharide from not having a spleen which causes polysaccharide bacterial infections. I appear to have bad swelling from chronic disseminated intravascular coagulation causing increased vascular permeability. Organic academia or my immune deficiencies could also be component in DIC. My non pitting swelling began as teen horrifying me yet doctors didn't think to run right tests at all. I get both bleed & clot abnormalities & Coumadin triggered my mitochondrial myopathy so heparin was tried a year till I lost my doctor. A few years later I tried low amounts alcohol I now stopped except one drink at holiday. I hadn't known alcohol was a mitochondrial toxin but I don't seem better without alcohol & wonder if 1/3 serving 2x week isn't bad idea or not. I think i'm frameshift genetic mutation or that some is secondary translocational from child onset viral. I used get super low BP's but dehydration syndromes like renal tubular acidosis & mild fluctuating hypopituitary caused swelling that adds many pounds till I got high BPs near 200s! I cant take beta blockers anymore, they speed my heartbeat too much & calcium channel blockers cause severe forceful cough spasms so that's out too. I should be on chronic low dose antibiotics for my post splenectomy syndrome but asplenia falls under training that only sickle cell hematologists know & in my opinion medical training has bad gaps & some race biases. I'm white & don't have sickle cell but having a severe case of post spleen syndrome has got me many race related hate remarks at many hospitals. There are web chats anyone can read that some hospitals are harsh to wrong on sickle cell care. I's a hard one to cope with what i've seen on that one. Many doctors denied my care since my early teens. Doctors either believe I've complex medical & try to turn down my case sooner or later or they don't believe parts of my story so they won't even run basic tests they'd run on healthy people. 2 marfan experts agree I may have marfan which causes aneurysms. my extra long fingers were ignored by doctors years & that tends cause long arteries leading to aneurysms & eventual death by aneurysm. Evidently & i'm new to this, they can screen & treat marfan patients aneurysms but it eventually causes death by aneurysm. I'd extreme trigeminal neuralgia years ago now & evidence of mini strokes & later hemiparalysis since my teens. I couldn't scream from the trigeminal neuralgia pain. It was the max amount of pain as if shot or stabbed yet aside my usual face body swell I looked ok so was ignored. I made a few mild suicide attempts years ago over the pain only but am ok now for years but still get bouts bad heart pain or headaches. There are several nutrients & herbs said to at least reduce the risk of aneurysms & coincidence is I took all of them but not at once. My brain scans showed past abnormalities that resolved but I've still mild cerebellar atrophy ataxia for many years now. I feel the past abnormal brain scans may've been an aneurysm that is there but shrank from my expensive aggressive mega supplementation since youth. I knew I could have that excruciating pain to the max again living with terror years so it was horrid but I'm better to know closer what I am describing I went through. I felt embarrassed by the mysterious pain & others were treating me like a nut so I had to just live with it. I seek to demand tests eg MRA, diffusion MRI etc to get to bottom of it all but many good neurologists denied me in years past over my intermittent rare EEG's showing whole brain paroxysms. My rare pulmonary function test is consistent with marfan & I'd teen stretch marks when I weighed 14 lbs another sign of marfan. Treatments I seek are saline hydration for my mito, dehydration syndromes & immune inflammatory problems and oxygen for pulmonary hypertension of no spleen, low dose antibiotics for long term use & vasopressin for my mild but real low pituitary ADH. Dehydration turns into edema so i'd not want diuretics for my swell, they caused brain symptoms too. I was in congestive heart failure 3 months ago seemingly of hunger because i'm on a gluten free diet for celiac sprue & was denied timely access to food. I was hospitalized for my heart 2x, should've been more but ER's didn't take me seriously. My tests show heart disease but they can't tell what it is so I was referred to congenital expert. I'd a PICC central IV line years ago & my bizarre reaction till it was pulled from heart area seems maybe fit marfan too. I also have double vision, corneal dystrophy, retinal damage, ocular hypertension on exertion etc. Many mild mutant but i'm pretty so don't tend get sympathy often. I think I should be admitted to hospital but ER'a won't & i'v few outpatient docs who are dense, won't even read up on my rare medical. The congenital heart doc needs records I wait on. I'm alone on Soc Sec disability income & lack support or services so feel pretty scared. My faith & mega supplements really help me hold together & reduce what would be otherwise excruciating pain. I also use mega culinary herbs, 5 oz culinary herbs a month, tasty & very very healing. I've seen what holistic can do & I get why aneurysms aren't to be trusted to holistic care yet I've no options as this will take time. But has anyone with chance of recurring aneurysms tried supplements eg thyme rosemary horsechestnut chamomile quercitin pectin lemongrass male enhance herbs as nitric oxide source etc? Know if there are things to avoid?