**Hi All. Had EP studies. Home now. Dissapointing results...AM I UNGRATEEFUL?!***

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Vikki1975
Regular Member


Date Joined May 2005
Total Posts : 190
   Posted 7/21/2005 2:26 PM (GMT -7)   
Dear All
 
How are you all?
 
I have just got back from being in hospital for 5 days in London.  I was in for 3 days of monitoring and one day of EP studies and Catheterization.
 
The EP studies and catheters were not very nice.  I was not sedated, just a shot to numb the groin both sides and then the tubes passed up.  I havd one tiube up my left leg and 4 tubes (electrodes) onthe right.  My right leg is the most sore now, but am trying to take it easy.
 
Anyway.  Prior to this admission to hospital, I was told my the cardiologist that he was 98% sure I needed a pacemaker.  He saw that when I had a 5 day monitor fitted, it showed a time when my heart raced at 157 bpm and times when it was stopping at night! He said my dizziness and collapses were due to the irregular rythm, and with a pacemaker id feel so much better.  I was holding onto that hope!  I have even told my employer that id be ok after this op, etc. 
 
Anyway, after the EP studies he came to my room and  he said that my heart looked fairly healthy and that he didnt think it was irregular.  He has decided NOT to fit anything.  I asked him "what about the 157 bpm and the stoppages that showed on the monitor before the EP studies?".  He said that these occurences MAY have been due to interferance, or may be one of the electrodes coming lose in the night. 
 
At first these sound like poor excuses, as things did indeed show up on the graphs.  SO on one hand I am concerned that he has decided not to help me further.
 
But saying that, he is a very good Dr, and is recognised all over the UK as a leading heart dr.  Is also the chairman of the heart department in 3 hospitals! - So, on the other hand, I feel that he must be right with his diagnosis.  I am confused!
 
AM I BEING UNGRATEFUL by saying that I am now dissapointed?  The thing is that I have been ill, dizzy and collapsing for over a year now.  I truly thought this was the end of the line and I was now AT LAST going to be made well.  Although I didnt really want a pacemaker, I would have happily had one in exchange for a "dizzy free" life.  I was excited about the future.  Now I feel I am being left AGAIN with all my symptoms.  "Back to the drawing board" - as such.  Back to the Gp, more referrals,  for more testing?  Maybe with another ENT dr, another neurologist?  I am so confused. 
 
Also, I doubt my employer will not be happy when they hear I will not be made better.  How do I deal with that?  They are already fed up with me cos I have had time off, but what can I do?  Bet GP is tired of me too!  I feel so ill all the time....
 
I look forward to responses.  Vikki xxxxx

Famulus
Regular Member


Date Joined Jun 2005
Total Posts : 127
   Posted 7/21/2005 2:44 PM (GMT -7)   
Vikki - I can understand how disappointed you must be! (no, you're not being ungrateful, IMO)
I think that under the circumstances they have to repeat the holter. For him to say 'maybe a lead came off', or it MAY be interference' is irresponsible (in my opinion) escpecially given your symptoms. I would tell him that those are not acceptable answers. Hopefully you can go from there.
Take care,
Oona

Vikki1975
Regular Member


Date Joined May 2005
Total Posts : 190
   Posted 7/21/2005 3:03 PM (GMT -7)   

Thanks for reply.  I know how it seems.  That's why I am confused. 

The thing is a) I dont have the money right now for another monitor; and b) I have had 2 already, and they have shown two episodes of an irregular rythm.  But saying that, the normal thing to do after a possible abnormal rythm has been found, is to do these EP studies.  Now I have had them done, the dr feels that I dont have a problem.

It is hard for me to understand what is really going on.  I cant keep paying for monitors at £270 a time, and then getting nowhere.  As far as this excellent professional cardiologist (in the opinion of many) in London is concerned, I am ok.  If he is saying that, and he is well respected, maybe he is right?  Maybe I need to move on a look to another area for testing and anwers?  I am so confused 

:0( 

 

xxxxxx


LilacGal
Regular Member


Date Joined Apr 2005
Total Posts : 190
   Posted 7/21/2005 5:53 PM (GMT -7)   
Vicki,
 
You're not ungrateful.  I've been in your boat.  Heck, I'm in your boat right now.  (at least we're sailing together. :-) )  I've had an ep study for my arrhythmia and it didn't show anything...doc said my 180 hr was anxiety.  (he was an idiot btw.)
 
I've since switched docs and had two more ep studies and two ablations with those.  I'm still have high heart rates.  the first ep study/ablation combo my hr was up to 245!  since then, i haven't been that fast but i'm still managing to get up to 160 on a regular basis.
 
i''m wearing a holter monitor right now bc after these two ablations, i'm still feeling awful.  with each ablation, i had high hopes...but they didn't work like i (and my docs) had wanted and i felt the same way you feel right now.  you're not ungrateful.  it's disappointing to be told that you should come out of the hospital feeling better and to not feel the way you were told. 
 
I'm a little puzzled on the whole electrode coming loose thing.  if that was a possibility, i would have thought he would have mentioned it before putting you through all this.  I guess it's possible...i don't know...just seems like an odd explanation.
 
Oona is right...you're not ungrateful, just disappointed.
 
hugs,
 
smurf  lil smurf
Afterwards, the universe will explode for your pleasure. - Douglas Adams


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 7/21/2005 6:52 PM (GMT -7)   
Vikki,
 
Thanks for letting us know what happened - I am so sorry that they were unable to help you!!
 
Under normal circumstances, I would say that the Dr. could have been right, about the electrodes coming loose, I've actually had that happen and so has my husband during an EKG and it wasn't noticed, til afterwards when something wrong came up and they tightened them back down again and the EKG was ok.
 
And then the fact that you had the heart cath with EP study done?!  I'd say that was very thorough and to move on...BUT, as my dear friend, Lil, has already mentioned, she's been through the same thing, and I've been there while she's gone through all this, too, so I know that this can happen.  sad I would like to suggest that you get a 2nd opinion.  I don't know how that works in your country?  Is that possible?
 
Please let us know how you are doing!
 
My best wishes to you, Vikki.
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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heartangel
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Date Joined Mar 2004
Total Posts : 638
   Posted 7/21/2005 7:34 PM (GMT -7)   

You are not ungrateful just disapponted my friend I would go for another Holter mointer test too.

Heidi


Life is not  measured by the number of breaths we take,
But by the moments that take our breath away.
 
 
Faith does not lie in trusting God to stop the storm,
But in trusting Him to enable us to walk through the storm.
 
Heidi


LibbyG
Regular Member


Date Joined Apr 2005
Total Posts : 263
   Posted 7/21/2005 10:50 PM (GMT -7)   

i'm with everyone else on the advise for this too - can you get a second

opinion?  even though he might be the best by reputation, getting a second

opinion will at the very least make you feel somewhat better and a little more

in charge of what's happening to you.   don't be disappointed, although you

have a big right to be - just be assertive and keep at the docs 'til you get

some answers that satisfy you and/or at least make you feel more comfortable

with how you're being treated.

libby


Libby Gilmore, "The glass is half full"!

Juliette1
Regular Member


Date Joined Feb 2005
Total Posts : 72
   Posted 7/22/2005 7:01 AM (GMT -7)   

Hi Vikki

sorry it was all so unsatisfactory. It's very difficult when you're given assurances like "98% sure" about the pacemaker and then end up back where you started, I know. Can you get a fairly quick follow up appointment to discuss where you go from here?

Would it help if your GP spoke to your employer? It's easy to feel like a bit of a fraud when things don't go to plan, but you're not!


Vikki1975
Regular Member


Date Joined May 2005
Total Posts : 190
   Posted 7/23/2005 1:01 PM (GMT -7)   

Thanks for all your replies.  I do feel so alone and BACK AT SQUARE ONE.

THis SUCKS!!!  xxxx


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 7/23/2005 5:29 PM (GMT -7)   
Vikki, do you have any family there with you?, neighbors, friends? 
I know you have us!! yeah
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Vikki1975
Regular Member


Date Joined May 2005
Total Posts : 190
   Posted 7/24/2005 12:09 PM (GMT -7)   

I do have a GREAT hubby, he puts no pressure on me and is understanding.  I also have a mum, but she is SO critical of me and is always passing sarcastic comments (that I dont need!)

You know the feeling that you are really alone though?  its like, no matter how much people give me a hug (ie. my hubby)  these panic attacks ONLY happen to me, the dizziness ONLY happens to me, etc.  I feel very scared and trapped inside my body.


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 7/24/2005 12:48 PM (GMT -7)   
Vikki, yes, I do understand that.  I've had panic attacks in the past and they are frightening and frustrating!  yeah Remember, most of that is brought on by the irregular breathing.  Have you ever been on any medications for this?, gone through any treatment for it?  I am so sorry that you are having all this together with your ongoing health issues.  It is definitely brings on the stress!
 
Please take care and know that my best wishes are with you!
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Vikki1975
Regular Member


Date Joined May 2005
Total Posts : 190
   Posted 7/25/2005 12:55 PM (GMT -7)   

hi teri

no i havent had any meds for it really.  for the anxiety or panic attacks.  somedays i feel really normal and then other days I feel like im on the edge of a cliff - ya know??  I really cant find any triggers.  Have tried most things.

my gp once gave me Cipralex to try, but i took for 3 days and had ther WORST ATTACK OF MY LIFE!! never want that again!  so i stopped and am now scared of meds!  I do always have some valium in my bag though.  I know they calm me, so somehow just knowing they are in my bag can help mentally......


Teri16
Veteran Member


Date Joined Dec 2003
Total Posts : 5230
   Posted 7/25/2005 8:43 PM (GMT -7)   
Hiya Vikki!! tongue
 
Just the anxiety of illness seem to be able to bring on these type of attacks.  Especially if you do have any heart problems, it seems to sometimes accompany that.  I would most definitely speak to your Dr. again about medications that are more specific for anxiety like Klonopin, or even Zoloft which is an antidepressant that can also be used for people that have anxiety, panic attacks, etc.  There are many others, but that would be something for you and your Dr. to discuss!
 
I just want to wish you well and hope that you are feeling better very soon!
 
Hugs, Teri tongue
"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
Please allow HealingWell to continue helping others by donating:


Patoolla
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Date Joined Aug 2003
Total Posts : 525
   Posted 7/26/2005 1:10 PM (GMT -7)   
Vikki I'm so sorry your ep study did not go well and I sure understand your frustration and disappointment!  I do agree with the others, another try with the holter moniter would be a good idea, or perhaps a 2nd opinion especially on the results of the previous monitor test.  One thing I do know is that when they do the ep study they have to be able to induce the arrythmia otherwise they can not tell what is happening at the time of the irregularity.  Maybe your doc was not able to induce the arrythmia during the ep study.  I would've thought that he would have told you that tho.  At any rate I would sure keep after the doc or get another one to find out what is wrong!  Obviously something is wrong!  Its just so frustrating that we can't get understandable explainations from our docs sometimes without getting real assertive!  Hang in there!  Big hug, Pat

Kathlyn1950
Regular Member


Date Joined Mar 2004
Total Posts : 462
   Posted 7/26/2005 10:20 PM (GMT -7)   

Vikki, I was sorry to hear about your experience. That has to be so frustrating. And, let me add my two cents here: "You are not ungrateful." You want to know what is causing the problems and what you can do about it. It does suck that your health has to come down to having enough money to pay for procedures, etc.

I have also experienced both depression and anxiety. I had  severe anxiety during my heart attack and after. Now they are gone, and have decreased significanly in both frequency and intensity. There are medications that are available that can ease ore eliminate both the anxiety and depression. In addition, there are exercises that you can do to stop or alleviate those panic or anxiety attacks. (i.e., deep breathing, thought stopping, abdominal breathing, etc.) But you should talk to you primary doctor about this. She or he can help you decide what route to take, such as if you need medication, counseling, or both. I also wanted to mention that if you have a type of panic disorder, it is one of the most easily treated anxiety problems. However, I wanted to alsonote that the feelings you are having are very common among people who have gone through signifcant health problems. We hear it all the time on these boards.

I have been there, and I do know what it feels like to feel all alone, and that no one understands me, even though they love me. It IS scary!! I hope that you can continue to come to Healing Well. It's why support groups are usually helpful......because members are going through something very similar, can relate, and offer advice and suggestions. And, offer support because they do understand. Hang in there, Vikki! Hugs, Kathy 

 

 


Happy Grandmommy to Amanda, Alayna, Wyatt and Ezekiel

Post Edited (Kathlyn1950) : 7/27/2005 6:56:12 AM (GMT-6)


Stardreamer
Regular Member


Date Joined Mar 2005
Total Posts : 68
   Posted 7/28/2005 11:16 AM (GMT -7)   
Vikki---oh my  oh my---please do not  I repeat DONOT  feel ungrateful after all you are the one experiencing these episodes--you know how you feel and I know (from experience)  it is like talking to a brick wall
sometimes (as I am now course mine is not cardiac rhythms) I would absolutely if at all possible obtain a second opinion--just because the doc is very respected and very good doesn't mean he can't be missing something--sometimes it is  "like run of the mill"  doing the same things over and over and looking for something "out of the norm"  I know it gets old seeing your pcp  again and again (in fact I told mine last week "I am tired of seeing you aren't you tired of seeing me?" I have been seeing him  again  back to once a month and my cardio every 2-3 months)  keep after your doctors until a reasonable solution is found and don't ever feel like you are UNGRATEFUL-- remember it is their job to "FIX" you--
 
Good luck and I am so sorry you have to go through all this-- sad
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