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New Diagnosis Change in Rx.

heartache301
0 Recommendations

Ok I just got back from the Cleveland clinic and here is what I learned: My absent left main artery is a normal variant and DOES NOT require open heart surgery like the doctors I saw here in town thought... I have something called Endomethial Dysnfunction- with resulting coranary spasm/small vessel disease. The Beta blocker I have been being prescribed for years is completely contrindicated with my condition and likely made it much worse and exacerbated my condition resulting in my latest hospitalization. I have instead am having my calcium channel blocker and long acting nitrate does increased and possible addition of an ACE inhibitor, if my HTN is not under control without the Beta blocade. Also daily aspirin has been discontinued as it may also have an untoward mediated inflamtory response on the endometthial tissue. I am told to consider daily exercise the same way as taking a pill, in that if I miss exercising any amount less then 5 days a week it's like skipping a dose of medication. Regualr exercise (5 times a week or more) is CRUCIAL in the reducation of endothelial dysfunction.

As far as the Cleveland Clinic goes I was completely delighted with the care there. first my nurse took about an hour collecting a complete history from me (although they already had my records) and then the doctor, a FEMALE cardiologist, specializing in WOMENS HEART DISEASE, took an additional HOUR going over my complete family, medical and in particular caridac history in detail exactly what led to each procedure and hospitalization and then the outcome ... examined me and she litterally seemed instead of trying to solve the puzzle to fit my symptoms inside her pigeon-holed already determnined diagnosis, (she does not think I am having anxiety or panic attacks like my FORMER male cardiologist did) instead she viewed ME and my history as the puzzle to solve. After some additional testing the above diagnoses were given and changes in my medical regime made. . after she throuroughly went over exactly what my diagnosis meant,,.. we are going to try this for 6 weeks and if I am not improved in 6 weeks, she is going to do another cath but this time with coronary doppler. In the meantime as I live so far away we will adjust medications additiona/s dosages by phone calls if needed. Plus my entire chart will be available online.

I really recommend to ANYONE who is having problems they think getting the right diagnoses or treatment to conuslt a tertiary care or major medical school affiliated facility that has doctors on the cutting edge of medicine.... and look for one with doctors who specialize in WOMENS Heart disease... we are different and it was so refreshing being examined and treated by someone who not only recognizes how important the fact we are women is in our care.

I feel better already just knowing someone who knows exactly what they are doing is now charged with my care.

Explore topics in this discussion:

Exercise Cancer Surgery Procardia Lopressor Bypass surgery Inderal Verapamil Anxiety Plavix Beta blockers Angina Niacin Stent Norvasc Heart disease Toprol XL Cardizem Aspirin Imdur Diltiazem Viagra Pain Metoprolol Heart attack Edema

18 replies

heartache301

I keep saying endomethial.

its endothelial dysfunction.

it's new to me.

MomofCharm

Hi Heartache301,
I'm a new memeber & I occasionaly review the Women Heart Support discussions listed. I read your review with Cleveland Clinic & I'm happy, for you, that you have a woman Cardio Dr. It sounds like you are recieving the correct medication treatments. It's GREAT to hear you don't need surgery. Cleveland Clinic is listed as the #1 Hospital for heart disease, surgeries, etc.

I had my second open heart surgery at Cleveland Clinic, Oct. 2006. I wish I was told about the female dr's with the Womens Heart Disease Center. I would of requested a woman cardio Dr. to be involved with the Cardio Surgeon & my care. I agree with you, women dr.'s are more apt to listen to a woman with heart problems.

Keep us up to date how the new medications are working. Feeling confident with your Dr. is great! Hope your feeling better soon.

Take care,
MomofCharm

heartache301

Momofcharm- thanks for your reply..

I didn't go to the campus in Ohio. I went to the campus in Florida. They even have a Woman Cardiac surgeon there too. I'm a nurse, who used to work in CCU in NYC even and that is the first female cardiac surgeon I have ever encountered. I'm sure there are some, but you just do not see alot.

I really feel my cardiologist I had been treating with was a chauvinist now... He was my doctor for 5 years and it took me that long to realize. Yeah he saw me as a woman alright... and considered that in his diagnosis but to him "woman" is synomous with being "emotional"... rather then the actual physiological things that modern medicine shows happens in womens hearts.

hey and happy mother's day!!

gracie62

Just curious - would you mind sharing which beta blocker was contridicting your condition? I totally understand if you don't want to. I ask because I was put on and taken off of Toprol XL (a/k/a Metoprolol) by different doctors and given differing opinions on whether can contribute to, cause or worsen coronary artery spasms. I finally made the decision to avoid it after I was placed back on it after bypass surgery and had a heart attack 18 days caused, in part, by an artery spasm. Just curious which one you are avoiding because I would like to avoid anything that can make my spasms worse!

Glad to hear that you have found the answers you have been seeking and have a plan to manage it all.

Take care -
Dianna

lkay

Thanks for the explanation here - I think I just had an *ahaa* moment - I will definitely talk to my cardio about this next month.

I hope you continue to feel well now,
Laura

Ecksunbeam

Dear Heartache301,

Please ask your doctor about niacin as it has been shown to improve endolethial function. Doctors are now regularly prescribing it.

May the Blessings Be!

Sherrie

Kennarina

Apparently, only 7% of the world's cardiologists are women. That's why we don't see many of them around...


XOXOXO


http://www.myheartsisters.org

Yatchzee

Sounds like you had a great experience and are on the road to the proper diagnosis and treatment. I have read that beta blockers are contraindicated for cardiac spasms here and there around the internet. I have the spasms and take the calcium channel blocker, the ace inhibitor plus a statin with nitro for the quick relief of possible pain/blockage. It is nice to know that my doctor is following the best known treatment at this time. I hope this new regimen works for you.
Joyce

heartache301

Metorprolol, generic, Lopressor (not long acting like Toprol but same drug)

The doctor said actually first generation B-blockers are even worse (like Inderal) but for sure I should not be on any Betablockade at all.

Interesting a lot of people with microvascualr disease it seems are on Beta blockers yet the cause of both Microvascual disease and spasm (which I have both of) is endothelial dysfunction which should be primary treated with CA chanel blockers and ACE inh...

What I got out of this visit is that my former cardiologist was an interventionalist (and a man)... and he really treated me from an interventionlist standpoint only... this doctor I'm seeing now consulted with an interventionlist to go over my films... but... she seemed to look at the whole me and not just what she could and could not do with me from an interventionlist standpoint.. I think thats why my formed doctor was so quick to say "panic attack" because he likely isnt really informed on the current medical tx that doesnt involved invasive modalities... as evidenced by him contiuing me on a beta bloack despuite recent literature to the contrary....

heartache301

yes Ecksunbeam I read about Niacin last night when reading up on endothelial dysnfunction...

there is also a lot on L-lysine supplementation too which I will also speak with her about when I see her again in a few weeks.

Ecksunbeam

Yes--L-Lysine and L-Arginine.

Sherrie

heartache301

Also for clariffication she told me that the BEST drug for spasm was Norvasc... however as I had a reaction to Noravasc in the past with severe feet edema I should be taking Procardia or Verapamil which are about equal as second line.

As far as Beta blockers, I beleive they are the drug of choice post MI and open heart surgery... and some of you ladies that actually had an MI in the past but have coronary spasms now may need to try and outweigh benefit versus risk of being off or on beta blacker treatment now...

but from what she told me people who have not had a heart attack and have coronary spasms beta blockers are contraindicated (as is cigarette smoking, excessive caffiene etc)...

also something i dont see much of in the literature is that for people with endothelial dysnfunction.. aspirin may make it worse... again this is something you and your doctor should decide benefit versus risk on as aspirin does save lives in people having MI's to prevent clots formed from worsening...

knowing what I know I am going to stop taking daily asprin but if I ever feel I have chest pain unrepsonsive to nitro and think I'm having the big one... I'm going to pop and aspirin quickly...

we all are different and I guess it is an art as much as a science figuring out what works best for each of us.

gracie62

Thanks for the information. I am surprised at how many doctors offer differing opinions on the Beta Blocker issue and spasms. I was switched to an Ace Inhibitor (for BP) after my MI since my doctor agreed the Toprol probably contributed to the spasm that, iin part, caused it. I could not take Norvasc either. I had the same problem with edema. I have been on Cardizem (Diltiazem) and it has worked well for me so far with occasional tweaks in dosage. Like you said, everyone is different and it takes trial and error to get the right combo and dosage for each of us.

Your information reinforces my decision to avoid Beta Blockers. Thanks again.

Dianna

heartache301

Gracie,

I too am now on stronger stregnth Cardizem... I am weaning off the Beta-blocker as the doctor instructed you are to NEVER stop Beta bloackers suddenly as you can actually have a heart attack doing such.

I am also on a statin and a long acting nitro- Imdur whose does has also been increased.
We are going to see how my BP does with the higher doeses of calcimu channel blocker and nitriate and if it is still high she is going to introduce an ace inhibitor. (for BP)

sounds like your regime is just like they gave me at the CC... so good.

the last resort alterantive actually well if I'm still having angina when I go back in 6 weeks they are going to do an intracornary ultrasound to see which vessels exactly are spasming and see the extent of microvasculasardisease... now they can stent the vessels that are spasming but that wont help the MVD and that also means going on plavix and I wonder long term what platlete aggravating effect that would have on the endothelial dysfunction.

my husband has had a CABG and subsequent Stent and is on plavix...but he doesnt seem to have endothelial dysfunction and spasm...

seesm this occurs more in women, and may be related to estrogen production explaing the amount of micro disease and spasm in women..

interesting sidenote on the research I have been doing on the subject.. for men endothelial dysfunction is actually the cause of ED...

now if the pharma and medical community would put as much money and effort in to getting us women with endothelial dysfunction propoerly treated as they have getting men on viagra... maybe we'd be a lot healthier as a gender..

WhatTheHeck

Heartache-Isn't the Cleveland Clinic wonderful? I was there in 2002 when I had a heart attack at age 38. My heart doc IS a male, but he gave me the serious clot-busting drugs and all that. I think that there should be more female cardiologists, though, as even now a woman with symptoms of heart attack might be dismissed. I was lucky that I had the doctor that I did. I will need a valve replacement (mitrial valve prolapse-is that how it's all spelled?) but not for a few years.
I'm new at this sight. I am still having a tough time dealing with the fact that this happened, but I'll save that for my profile.
Best to you all, and HAPPY MOTHER'S DAY to all to whom it applies!

heartache301

whattheheck

I am totally impressed with the clevand clinic..

my husband is even considering changing his cardiologist over to mine... he was in the room with me when I saw her and was completely blown away impressed at her caring and competence.

however it is 220 miles from my home...

which means if either of us have an acute problem or require emergency hospitalization we are stuck here.. but we are hopeful that with this kind of care routine and elective care will be all we need...

I am lucky CC is on my insurance... I originally tried to get an appt at Mayo but they are out of network for me.. plus when I read CC is the #1 hospital in the country for heart disease.. that was my 1st choice anyway...

I think go depending on geography and insurance you can get simliar care at many tertiary care facilities such as Mayo or medical school university affiliated hospitals... we just got a medical school in my town and are getting a new VA and childrens hopsital and medical school hospital because of it.. maybe I'll have more choices here once that is finished..

my son who is 8 and has ventricular arrythmias is followed by The Miami Children's Hospital heart Center.. which luckily has a satellite here in central Florida.. they do an outstanding job there too as does the care my dad got for cancer when I took him up the The Univeristy of Florida Shands facility...

I think the lesson is if you are having issues with your doctors, or diagnoses look into teritary care .. there are plenty of them nation wide, they accept an array of insurance and most are used to dealing with people from out of town and will schedule all your appointments and testing on the same day as well as get you deals at local hotels...

and as for the price of traveling, meals hotels milelage airfare even are all tax deductable.. when traveling for health reasons...

armywife7283

Im new and have the same disorder as you ladies. What complicates things is Ive had heart disease all my life. I was born with it. Im on Tiazac (Diltiazam), nitropatch .2mgs, nitro sl .4mgs prn. I also take omega-3 and cq-10. I havent heard about the niacin but it makes sense. I will ask the doc about it. i was just told to stop the beta blocker and also stop asprin for the same reasons. I can tell on the CA blocker and the nitropatch im doing much better. I actually went out in the yard and did some work with no angina for once. Have a great day ladies

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