I just read your post. Please dont give up. There is a lady on here with an ICD and if you scroll down and look for her, her name is Lisa33167 and I am sure she may be able to help you, if nothing else, relate to your situation. Please dont give up. :(
I'll post more later, it's difficult to type right now.
I know what you're going through; been through it for almost 2 years but I've only had 1 ablation, refused a 2nd one and pretty much the same as you - even with ablation; meds and ICD have VT runs daily. VT is very difficult to treat & ablate and makes cases like ours difficult. My VT turned out to be Polymorphic VT and no known cause and I developed non ischemic CM after my ablation.
Have you gone to one of the large clinics like Mayo, Cleveland or Vanderbilt? I'm not sure how big John Hopkins is or if they deal with complicated cases but it sounds like you have a complicated case and need someone who is used to dealing with VT.
I know there are others who have problems like this also, hopefully someone else will give you some advice also. I've been referred to Vanderbilt and going during the summer for some more answers.
You may want to post in the heart disease expert forum for some guidance and referral. I know it's difficult, but hang in there and stay strong.
All of us here who suffer from very simple, easy to live with, heart rhythm conditions can only give you our wishes for relief and prayers for a cure.
When I say "all of us here" I of course assume others like me who at times feel sorry for ourselves realize when reading posts like this one that we are indeed among the lucky of those afflicted with heart problems.
sorry i should have asked - what is the cause of your VT or arrhythmia's? what type of VT do you have? what caused your CM?
I have ANS issues along with thyroid and these make my symptoms worse have they checked for everything to make sure you don't have other things that are making you worse? Autonomic Dysfunction can make it worse as well as thyroid.
Hey There! Don't give up, I am in the same place so let's prop each other up :) I have had 4 ablations getting ready for number 5 (usually about 18 months apart), I have been on amiodaron (gave me hyperthyroidism), I take sotalol right now (was on it once before but it suddenly stop working), I have been on every anti-arrythmic on the market (except those that interfered with other meds) But you are asking the same question I am asking .....now what do we do? I have gone through 4 EP doctors but they all want to do the same thing ablate... right now I am pretty much bedridden also but I have found that talking on these boards have made me feel alot better. I hope things get better for you and if you need a friend I'm here :)
John Hopkins is a large and very good hospital. Have you asked about a mini maze procedure?? I do some people who have had several ablations that failed, then had a mini maze done, and that finally helped them out. If I were you, I would talk to my doctor to see if this procedure is an option for you. Good Luck! Wishing you well, and wishing you enough.,.