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Hello all,


I was born with Tetralogy of Fallot in 1977 and had some surgeries which involved a tissue valve replacement at Killingbeck hospital by a Dr Walker. I went to various follow up clinics to check on my progress. 

In 2006 I collapsed at home with fast heart rhythms and after an Ultrasound of my Heart and Angiogram was told that I needed further surgery to fix the problem. As part of the procedure I had another tissue valve replacement and my Sternum had to be rewired. I also had the right hand side of my groin opened should they have needed to go in an emergency. After the operation I had a vac pack on my groin as it became infected and I needed a Defibrilator fitted help my heart should it need to. 

I have always suffered from swelling in my feet and ankles but more so on the right since the surgery. After an ultrasound on the leg I was told that the veins or arteries had been damaged as a result of them opening it up and I was to wear surgical stockings permenantly to try and help reduce the swelling. I have great difficulty buying appropriate footwear and am limited to trainers.

As part of the Sternal rewiring, I have been getting very strong stabbing pains under my breasts and in my ribs. This also spreads into various other parts of my body. I have been to various pain clinics and on various pain medications but nothing seems to help. Tramadol, Pregablin and Gabephentin only made me slur my words and made me dizzy. I also tried Capsican cream but this eventually started to irritate my skin. I wear Versatis so that I can get some relief at night and so I can sleep.

After various appointments I was referred to the Thorasic Team at St James in Leeds. Dr Milton suggested I have a 3D CT scan and normal chest xrays showed very little. The scan has since found that there is a step in my chest bones. There is also a swollen lump in between my breasts which the consultant says is normal. At first they thought it was nerve damage. The consultant told me that I can have a course of Trigger Point Injections containing a Steroid but it may or may not work. He also said that the likelihood is that I may need further surgery which if I chose to take would be very risky. He also said he would need the Heart Team and the Leeds General Infirmary. Mr Gurerro, the Heart Surgeon has since left and ive not met the new one who will be unaware of my case.I became very emotional during the appointment and was saying sorry constantly for become so frustrated.

I try not to let the pain get me down but it is very difficult as I am limited in what I can do. I was also told by the Heart Doctors to prepare for the fact that the pain may never go away but it is very tough to accept.

i have tried looking for various support groups within the Heart Section locally for people experiencing similar issues but only found it is for young children and parents and carers .

I was wondering if anyone knows someone with a similar problem, has had it themselves or has still got it.


Many Thanks  




Hi i have had open heart surgery 8 months ago i also have the same problems sutures hurt chest pain I want to go to the hospital but then after a couple of days i feel better My doctor told me it was normal for this pain and i should be ok i have had 1 episode since my bypass surgery my heart was in a fib at 140 min they did some proceedure which they stopped and restarted my heart and it seemed to stop the afib I will keep you updated on the pain swelling progress i will respond to this after june 22 that is when i see my heart doctor to see if this is still normal