I'm a 34 yr old male living in London, UK.
I was diagnosed with a large ASD in november 2013 as part of a screening. I've experienced fatigue in the past few years. I've always been moderately active but in hindsight my stamina probably isn't all that great.
In the past few weeks I've had an angiogram and transoesphogeal echo. These confirmed a large hole 25mm x 15mm in the lower part of the atrium. I was told it was a secundum. I have an enlarged right heart. On a positive note I have no other problems with valves and my pulmonary function hasn't been affected.
I am waiting on a surgeon's confirmed recommendations but the doctor who carried out the T.O.E said the rim around hole was not strong/sufficient to allow for device closure. Waiting for confirmation of this but it sounds likely I'll need to go the surgery route. This is/was by biggest fear.
With that being said, does anyone have any knowledge on the NHS performing minimally invasive or robotic assissted surgery? Are there private clinics that offer these in the UK.
What would the ballpark cost of these if I were to go privately. I would be very grateful if someone could PM me this. Even a price from one of the US clinics, eg Cleveland or Mayo would be helpful.
I would be loathe to have to go OHS.
I am glad I found this forum and read everyone elses stories. It offers great support in this very difficult and stressful time.
Is anyone able to help me?
It would be much appreciated.
It must be a stressful time, Elan. There are many success stories here, and many members have done very well after surgery, though fearful before it happened. I have shared this discussion too with our members, and hope you will get feedback soon.
Sorry I can not help you with cost. Email the US clinics. I am sure someone will get back to you with some idea. To give a cost will be hard to do because it will depend on what they have to do and if they have to do more than was expected. I think surgery is the way to fix this. Do not try for a device closure. Good luck.
Thanks both for the replies.
Yes it is a stressful time, especially the waiting. Have still yet to meet with the consultant cardiologist for the full diagnosis.
From my research there is only 1 hospital in the UK to offer robotic closure. I'm not sure about how many may do 'human' minimally invasive closure. I asked about US clinics as it appears to be more available there.
Once I get to meet the NHS cardiologist I'll hopefully get to query him/her on things and it's good to know there are channels I can exlore in US if robotic is not available on NHS. Which it may be considering the continual budget cuts. 300,000 of the UK population is on an NHS waiting list of some kind!
lHello. I am 44 and I was diagnosed with ASD in September 2012. I never had any symptoms. I found out when I was in school in Echo program, and one of my instructor noticed my right side of the heart enlarged. they did a full echo on me and discovered the large ASD I had. I closed it with Amplatzer device on October 2012. I remember the doctor told me the hole was so big, and the posterior rim was weak, but finally they closed it. procedure took 2 hours under general anesthesia. I stayed one night in hospital, and I was discharged next day. I went at work one weak after. I never had symptoms even before nor after closure. I read the new report of FDA about complication of device closure such as EROSION, and I am kind of scared. This is a very rare complication, but we should be positive. I have been experiencing some episodes of dizziness lately, and had a stress echo for that, and everything was fine. doctor told me that dizziness I have does not have cardiac origin. Regarding the cost of the procedure it is hard to say. I got a bill of $ 50000, but insurance paid most of it, and that included procedure, all examinations and lab work.
Hi reidka. Thanks for sharing your positive story and good to hear everything went well for you. Was it 50,000 or 5,000 ?
I too read about possible erosion but it is extremely rare and I believe it is less rare these days as sizing of the device to hole is now more accurate.
It was 50000 dollars. This procedures are expensive in US
I googled the procedures and they run about $50,000 and up (American Dollars).
It does mention that if you are paying for this out of pocket you may want to consider a "medical tourism" trip.
If you are willing to travel to a foreign country you can get surgeries for much much less.
I had a large hole (2cm) but my surgeon deicded that the catheter procedure would work for me.
I would see what your surgeon recommends - he may have a different opinion than your cardiologist does.
Wishing you lots of good luck!
Hello Elan, your story sounds a lot like mine. I'm 33 and had my repair done via catheter the week of Thanksgiving at the Cleveland Clinic. I found out I had a large ASD in August via an echocardiogram and then later had an MRI to determine if it affected my lungs, etc. Those results turned out good. Since I was from out of town we scheduled my TEE on a Monday and tentatively scheduled my ASD closure for the next day. So from the date I made my appointments I had to worry about my TEE results and if I would even be able to do the cath route.
I know the whole thing can be so scary but try to thing about life AFTER you have this repaired. One day, this will be a thing of the past. These heart docs are amazing and do OHS every day. I prepared myself for this and even went and spoke with my Priest because I was so scared.... he really helped me:)
Everything will be ok!
Hi Jennifer, Thanks for the info. Am glad things worked out well for you. I am eagerly awaiting meeting with the consultant cardiologist/surgeon to hear what they say. Trying to prepare for all possibilities.
I have been researching some more and I have read good things about Belgium in terms of "medical tourism". They are world reknowned, have 3 daVincis and the cost is much less than US. It's also in europe so much nearer. As a coincident "In Brugges" is a favourite movie of mine :)
Thanks all for the support
oh my god, it's all crazy 2 me
I think anywhere but the USA would have a better cost. I know nothing about any of the countries safety.
I am not sure why everywhere is pushing the Amplatzer. Is anyone getting the Gore Helex put in? It looks like a better chance of surviving when the thing shifts. Thinner, less metal, less chance of erosion. I hate that the Amplatzer is still being tested on so many people.
Good luck all and do not be just positive, keep getting checked if you feel something is not right, because we should all know now that it is not in our head, it is in our heart.