Dear Ms Johnson.
I do not think your mother should give up just yet. The diagnosis of IHSS is not a death sentence and there are many options available for her short of surgery. The symptoms she is describing may be due to a number of conditions and although I am going to give you some suggestions these should in no way replace an evaluation by a trained cardiologist. As you may well be aware of IHSS may be associated with irregular rhythms of the heart some benign and some less so. To determine if these are the cause of her dizzy spells, there a number of options, the most ideal would be if she could be seen and the same time she is having her symptom. If this is possible one would determine if she is hypotensive, or if her pulse is irregular. Another option would be to obtain an ambulatory ecg recording whereby a continuos recording of her electrocardiogram is obtained and this could be correlated with any symptoms she may have felt at the time of recording. If her problem is due to a rhythm problem there are a number of options for treatment including medications and implantable defibrillators that could alleviate her symptoms.
Another consideration would be to consider how severe her cardiomyopathy is, and whether a severe dynamic obstruction is causing her symptoms. If that were the case it would be of utmost importance that she is not allowed to become dehydrated and she is not given to many medications that can decrease the volume of blood returning to her heart as this may make the obstruction worse. If the hypertrophy is the cause of her symptoms there are a number of options some of which are still investigational that may be considered. Among these I may mention a pacemaker implantation that would alter the dynamics of contraction of the left ventricle and theoretically decrease the degree of obstruction to the left ventricle. You could also consider having her seen her at the Cleveland Clinic where we currently have a protocol to decrease the obstruction by embolizing alcohol down the artery that supplies the muscle causing the obstruction. Although still investigational we have seen some very promising results in the cases we have seen so far.
Unfortunately I cannot help you in your question in regards to physicians in New Jersey. I also suggest you refer to the numerous questions on this subject that have been posted in this forum, under the title of IHSS or hypertrophic cardiomyopathy. I hope this information will be of some use to you and that your mother will be able to find some solace. If you have any further question or would like to be seen by one of our cardiologist her at the Cleveland Clinic please feel free to call !-800-CCF-CARE to set this up.
Information in this forum is intended for general purposes only, diagnosis and specific treatment strategies should be reserved for physicians directly involved in patient care.