Aa
Finally...
After 2 years of asking tons of questions and wondering, waiting asking more questions I have a diagnosis. I've spent all day at the hospital and been tested top to bottom and found out my diagnosis - HOCM - hypertrophic cardiomyopathy.
I went in earlier today for what my dr thought was a contusion (?) i think is what they called it from a fall last week after a severe bout with vertigo & dizziness.
I don't know whether to cry or laugh...all this time I've tried to get answers and it was on the paperwork that the hospital and my original EP didn't give me. it's really a relief and now I have tons more questions.
btw does anyone know how you can have strong electromagnetic interference with an ICD if you don't move out of bed for a day? my ICD showed this all day Wednesday when I was in bed sick and didn't even get up but once to go to the bathroom.
I went in earlier today for what my dr thought was a contusion (?) i think is what they called it from a fall last week after a severe bout with vertigo & dizziness.
I don't know whether to cry or laugh...all this time I've tried to get answers and it was on the paperwork that the hospital and my original EP didn't give me. it's really a relief and now I have tons more questions.
btw does anyone know how you can have strong electromagnetic interference with an ICD if you don't move out of bed for a day? my ICD showed this all day Wednesday when I was in bed sick and didn't even get up but once to go to the bathroom.
thanks for the answer =) I think that's my problem too; any clue why it's that way? Have you had anything done to treat the obstruction?
I noticed 5 or 6 months ago (maybe longer I'd had to find my post) my SoB worsened to where it was sitting and laying flat but I thought maybe I had started into heart failure because there was ankle swelling.
I really hope when I go to Mayo they can help; still waiting on my call back w/appt date/tiime after they go through my insurance.
I noticed 5 or 6 months ago (maybe longer I'd had to find my post) my SoB worsened to where it was sitting and laying flat but I thought maybe I had started into heart failure because there was ankle swelling.
I really hope when I go to Mayo they can help; still waiting on my call back w/appt date/tiime after they go through my insurance.
I had the dx long before my first heart cath. I had a ecg, echo and stress test and they told me I had HOCM. Had a heart cath a few years later and it was confirmed. I was lucky enough to see some very good doctors from Pittsburgh, Some of them left to go to Cleavland clinic when it first started.
My electrical problems where always worse than the pump.
My electrical problems where always worse than the pump.
sorry I should know this but how were you diagnosed? apparently it was through my cardiac catherization
I'm curious how much of a chance there can be a misdiagnosis with a cath? I know it's the gold standard for many.
I'm curious how much of a chance there can be a misdiagnosis with a cath? I know it's the gold standard for many.
thanks for the info; I've been doing some reading but would like any info you have - i registered at HCMA and called Mayo Clinic
That's one of the things I'm interested in see is about nitrates; does it make your hr plummet also? I think I read that would happen in the heart disease forum when I asked back in 2009 or 2010.
That's one of the things I'm interested in see is about nitrates; does it make your hr plummet also? I think I read that would happen in the heart disease forum when I asked back in 2009 or 2010.
I just wanted to add I can not take any nitrates, It makes my BP crash.
Lisa
I take a beta-blocker and flecainide have an ICD/Pacer. I take lasix as needed, But not often.
HOCM treatment is more tailored made for the patient. They will probably try meds first to reduce the obstruction. And a lot of focus may go into the electrical system and how it is working. HOCM is also called IHSS and ASH. If you are looking for any more info let me know
I take a beta-blocker and flecainide have an ICD/Pacer. I take lasix as needed, But not often.
HOCM treatment is more tailored made for the patient. They will probably try meds first to reduce the obstruction. And a lot of focus may go into the electrical system and how it is working. HOCM is also called IHSS and ASH. If you are looking for any more info let me know
random ramblings to follow, sorry...just thinking out loud and trying to figure things out...
I'm going to make an appt with Mayo clinic to see; either way I want to know. I know there are very few doctors who understand HCM or HOCM and sometimes it's difficult to diagnose in some patients.
My original EP mentioned HCM as well as ARVD, but my cardiologist who did all the testing before surgery never mentioned HCM... it wasn't in any paperwork I have and all they talked about was ARVD (or that I remember).
I was too sick to ask why they called in an EP after my EKG's Saturday, but now I'm glad they did. Maybe this is the path to finally getting some answers.
The EP they called in, had my files from 2009 and went over them. He said I see you have Obstructive HCM and had an ICD implanted? I said no I don't have HCM, are you sure you have the right files, I know my EP thought I had ARVD; but nothing was conclusive...he said I've looked over your files, tests you had and your tests now & it says you have HOCM. (they did ekg's and a CT)
This is the same thing I went through on June 3rd with the EP at the univeristy here...45 minutes of questions, grilling me and testing my icd and when he said my ICD was implanted for HOCM I told him no ARVD was suspected. I didn't understand what the heck he was saying - very thick asian accent and he pronounced it hoecoom...lol I need a new brain; the 2 connected with what the EP was saying then on Saturday.
My daughter sat there embarrassed because I was arguing with the dr's lol I was ticked because here was another dr grilling me about my heart when I went in about my head; which was splitting and I was in a foul mood having to answer a million questions and having more tests done...
The EP showed me the "official" diagnosis and Boston Scientific has my official dx as HOCM also; which the tech also asked about when he did my interrogation....list your name, date of birth, address etc - bam here it is.... I see you have an ICD for HOCM? I just looked blankly and said yup that's what the EP tells me.
The EP told me I needed to follow up with a specialist who deals with HCM patients after finding out I am still having a ton of problems and not really treated; except w/Inderal when I feel like I need it.
If it's not HOCM I want it off my medical record asap. why is that my official dx if I don't have it? why saddle me with a dx like that if they weren't sure?
I've questioned this before; I think in the HD forum - I know nitro has an adverse affect on HCM patients...during my TTT, I find it interesting that my bp/hr stayed relatively even for 20 minutes, until they gave me nitro...only then did my HR plummet, bp tanked and my heart stopped - I was told that was very rare and they didn't know why it happened; yet I was dx with NCS/OI or was that just an easy answer?
I remember being told that would happen to a patient with HCM, just as with diuretics; which is what my dr put me on in Nov 2008 - Jan 2009 when I first felt what I thought was my heart stopping when I was driving and then 2 other times in Jan & Feb 2009.
the more I think about it the madder I get, so I won't worry until I go to Mayo, but it will be interesting to find out the answer
I'm going to make an appt with Mayo clinic to see; either way I want to know. I know there are very few doctors who understand HCM or HOCM and sometimes it's difficult to diagnose in some patients.
My original EP mentioned HCM as well as ARVD, but my cardiologist who did all the testing before surgery never mentioned HCM... it wasn't in any paperwork I have and all they talked about was ARVD (or that I remember).
I was too sick to ask why they called in an EP after my EKG's Saturday, but now I'm glad they did. Maybe this is the path to finally getting some answers.
The EP they called in, had my files from 2009 and went over them. He said I see you have Obstructive HCM and had an ICD implanted? I said no I don't have HCM, are you sure you have the right files, I know my EP thought I had ARVD; but nothing was conclusive...he said I've looked over your files, tests you had and your tests now & it says you have HOCM. (they did ekg's and a CT)
This is the same thing I went through on June 3rd with the EP at the univeristy here...45 minutes of questions, grilling me and testing my icd and when he said my ICD was implanted for HOCM I told him no ARVD was suspected. I didn't understand what the heck he was saying - very thick asian accent and he pronounced it hoecoom...lol I need a new brain; the 2 connected with what the EP was saying then on Saturday.
My daughter sat there embarrassed because I was arguing with the dr's lol I was ticked because here was another dr grilling me about my heart when I went in about my head; which was splitting and I was in a foul mood having to answer a million questions and having more tests done...
The EP showed me the "official" diagnosis and Boston Scientific has my official dx as HOCM also; which the tech also asked about when he did my interrogation....list your name, date of birth, address etc - bam here it is.... I see you have an ICD for HOCM? I just looked blankly and said yup that's what the EP tells me.
The EP told me I needed to follow up with a specialist who deals with HCM patients after finding out I am still having a ton of problems and not really treated; except w/Inderal when I feel like I need it.
If it's not HOCM I want it off my medical record asap. why is that my official dx if I don't have it? why saddle me with a dx like that if they weren't sure?
I've questioned this before; I think in the HD forum - I know nitro has an adverse affect on HCM patients...during my TTT, I find it interesting that my bp/hr stayed relatively even for 20 minutes, until they gave me nitro...only then did my HR plummet, bp tanked and my heart stopped - I was told that was very rare and they didn't know why it happened; yet I was dx with NCS/OI or was that just an easy answer?
I remember being told that would happen to a patient with HCM, just as with diuretics; which is what my dr put me on in Nov 2008 - Jan 2009 when I first felt what I thought was my heart stopping when I was driving and then 2 other times in Jan & Feb 2009.
the more I think about it the madder I get, so I won't worry until I go to Mayo, but it will be interesting to find out the answer
Septal ablation with alcohol is not an ablation like we think of it (to treat arrhythmias).
It is something they do to cause a (controlled) MI by blocking some of the septal blood vessels, so this part that's blocking the LVOT will shrink and make the blood flow free of obstacles. Sure sounds strange but it's supposed to help.
There is a difference between LVH and HCM. Even with LVH, there is a very small chance you have HCM. And even with HCM, only 25% have HOCM.
It is something they do to cause a (controlled) MI by blocking some of the septal blood vessels, so this part that's blocking the LVOT will shrink and make the blood flow free of obstacles. Sure sounds strange but it's supposed to help.
There is a difference between LVH and HCM. Even with LVH, there is a very small chance you have HCM. And even with HCM, only 25% have HOCM.
I'm going to look it up also; but I forgot...there are no treatments for HOCM just an ablation?
Kevk how do they treat yours? I know I've talked to you about it before but I'm sorry I just can't remember :(
Kevk how do they treat yours? I know I've talked to you about it before but I'm sorry I just can't remember :(
me too and why I questioned each dr after trying to find out what's wrong; I don't know how to make it definitive though - I was shocked when they told me and talked to the EP that was there in length who told me to go see a HCM specialist
It's probably part of the problem with my cognitive problems and the original EP not explaining what he decided was wrong with me...
I looked it up and remember searching before when they first mentioned HCM but not that I had the obstructive part; still have to find out about that.
It's probably part of the problem with my cognitive problems and the original EP not explaining what he decided was wrong with me...
I looked it up and remember searching before when they first mentioned HCM but not that I had the obstructive part; still have to find out about that.
Really?
That makes some sort of sense. I always thought your doctors had ruled that out long time ago, it's not that uncommon. But it explains all your symptoms.
Yes, I think it can be treated with "septum ablation". They are injecting (in controlled amounts) alcohol into the troublesome parts of septum that are really hypertrophied and causing obstruction. You can google it and see :)
That makes some sort of sense. I always thought your doctors had ruled that out long time ago, it's not that uncommon. But it explains all your symptoms.
Yes, I think it can be treated with "septum ablation". They are injecting (in controlled amounts) alcohol into the troublesome parts of septum that are really hypertrophied and causing obstruction. You can google it and see :)
it all happened so fast I'm still going through exactly what it means...HOCM was one of the things they suspected but to have that dx is a relief; but leaves me with so many questions that I'll have to figure out now with my dr on June 27th.
WHY didn't the original EP tell me that's what he actually diagnosed me with - it's on all my formal papers and I saw him from July 2009 - Dec 09 and asked a million times what was wrong and what caused it; he told me he thought ARVD but didn't get back with me after my cath and implant because he was out of town; then my 3 mth checkup he told me he didn't know what caused it; I thought we were still looking at ARVD.
The boston sci rep that was there tried to figure out what the interference was, went through each minute of the episdoes and checked the printouts and can't figure it out, so I'm going to call BS Monday and ask. I find it curious that I had this huge major ANS episode but they say it was the interference they can't pinpoint...if it had been any other day I would really wonder.
BBXX I don't know if there's a cure, maybe Kevk knows I'm so fuzzy brained today and still kind of drugged I have to clear my head to understand stuff. Jannie; that's going to be one my questions - what can be done what treatment and why wasn't it done before.
WHY didn't the original EP tell me that's what he actually diagnosed me with - it's on all my formal papers and I saw him from July 2009 - Dec 09 and asked a million times what was wrong and what caused it; he told me he thought ARVD but didn't get back with me after my cath and implant because he was out of town; then my 3 mth checkup he told me he didn't know what caused it; I thought we were still looking at ARVD.
The boston sci rep that was there tried to figure out what the interference was, went through each minute of the episdoes and checked the printouts and can't figure it out, so I'm going to call BS Monday and ask. I find it curious that I had this huge major ANS episode but they say it was the interference they can't pinpoint...if it had been any other day I would really wonder.
BBXX I don't know if there's a cure, maybe Kevk knows I'm so fuzzy brained today and still kind of drugged I have to clear my head to understand stuff. Jannie; that's going to be one my questions - what can be done what treatment and why wasn't it done before.
So happy you finally know what you have! Is there a cure?
Glad you finally got some answers. Did they tell you where your obstruction is ? I have lv mid wall obstruction.
I would call the manufacturer of your icd to see what may have caused the electrical interference issues you have.
I would call the manufacturer of your icd to see what may have caused the electrical interference issues you have.
So glad you finally have a diagnosis - nothing is worse than the stress of not knowing.
Now that you know what it is, you and your doctor can develop a treatment plan and maybe you will finally have some relief. I sincerely hope they can do something to help you now.....you've been through too much already.
Now that you know what it is, you and your doctor can develop a treatment plan and maybe you will finally have some relief. I sincerely hope they can do something to help you now.....you've been through too much already.
that's my thoughts also and it is such a relief - no more midnight searches and asking a million questions when all they had to do was order the "doctor's" notes which I didn't know to do - it showed my dx right there and is listed on my ICD page...the thing is the dr at the University here said something to me about HOCM on June 3rd and it just went right over my head.
While I was in the hospital, they had to bring a BS tech because my EKG was "weird" to them...just normal stuff for me though.
Since I blacked out hitting my head, they wanted to make sure I didn't get shocked; no shock but June 8th he picked up events and pulled up the whole day and showed I came in contact with strong magnetic interference all day.
My daughter who was with me looked at me so I had her pull out my log book - Wed June 8th was the day my husband stayed home and I was in bed with such extreme vertigo and dizziness I couldn't move. I told the guy this and he said I needed to be seen by my EP because that was not possible since it hadn't picked that up before and we haven't moved or changed anything in the house.
I'm going to google search to see; just really really strange...
Since I blacked out hitting my head, they wanted to make sure I didn't get shocked; no shock but June 8th he picked up events and pulled up the whole day and showed I came in contact with strong magnetic interference all day.
My daughter who was with me looked at me so I had her pull out my log book - Wed June 8th was the day my husband stayed home and I was in bed with such extreme vertigo and dizziness I couldn't move. I told the guy this and he said I needed to be seen by my EP because that was not possible since it hadn't picked that up before and we haven't moved or changed anything in the house.
I'm going to google search to see; just really really strange...
Congratulations on at last having a definitive diagnosis, even if it was there all the time. Sigh. But you really do know what's wrong now, and I'm sure it's a relief not to be hanging in the wind anymore.
Now, you, as you say, can ask a ton of very directed questions, and you and your doctors can finally work on intelligent, informed treatment.
Now, you, as you say, can ask a ton of very directed questions, and you and your doctors can finally work on intelligent, informed treatment.
I am not sure what you mean when you say you have strong electromagnetic interference on your ICD. How do you know that you have electromagnetic interference? I know we measure that in our labs sometimes, but how do you measure something like that from your bed? Does the device itself measure it in some fashion?
I think that can be caused by any electric field or any magnetic field. You could probably find on the web a list of things that can create electromagnectic compatibility issues with your ICD. Some possibilities would be: cell phone, electric blanket.
Sorry to hear about your woes. Stick with it, and get better soon!
I think that can be caused by any electric field or any magnetic field. You could probably find on the web a list of things that can create electromagnectic compatibility issues with your ICD. Some possibilities would be: cell phone, electric blanket.
Sorry to hear about your woes. Stick with it, and get better soon!
opps obstructive should be in the diagnosis HOCM - Hypertrophic obstructive cardiomyopathy
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