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Old 01-28-2011, 10:06 AM   #1
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my son 8yrs has aneursym on left ventricle

Hi i was wondering if anyone has been in my position or has been diagnosed with this kind of aneursym. My son who is 8yrs has been complaining of chest pain so i took him to gp, he was referred to hospital for more tests, he had a echo scan as he had a murmur they have discovered what is a anyeursym in the left ventricle of his heart. I am extremely worried about him as i have read about this and it could be life threating. My son is now awaiting an mri and excercise tolerance test and has to wear a loop machine, the doctor's want to know if the aneursym is pressing against his electrical system in his heart. I am very nervous as he has to go to go to sleep for mri so he is perfectly still while they scan him. Please could anyone tell me what the procedure would be if they find that the aneursym is pressing. Does anyone know what happens with this kind of aneursym. thanks Claire

 
Old 01-29-2011, 09:38 AM   #2
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Re: my son 8yrs has aneursym on left ventricle

honestly? i have never personally heard of this type of an annie before. but i WOULD most defintiely make certain that you are getting second opinions,esp from the more up to date and cutting edge types of medical university teaching hospitals? this is where i have gone and my son too when we had some rather rare and insane crappy medical stuff going on. the more 'rare' a situation/condition just 'is' the better the expertise simply also needs to be as far as overall knowledge and true understanding of 'that" more specific conditon needs to be for the best possible treatment and answers.

from one mom to another, i really am sorry you and your son are even having to deal with this. if you are looking for more info on what just sounds to me to BE a more 'rare disorder" i would check with places like NORD, who are keepers of info on the more rare condition info? i believe that acronym stands for the 'national orgination of rare disorders" but don't quote me on that since my memory is a bit off from when WE needed to access the info WE needed for my sons 'suprise' liver failure condition. but this is also a USA government agency that you still should be able to access despite where you live?

i really am sorry i cannot be of more help to you hon. but DO so hope that everything just does turn out in all the very best ways for your son. please DO keep me posted if you can. just try and find the more 'rare" types of sites that carry info on what the specific 'label' they have given this annie within his heart may be? he could have actually been born with this already there but just did not 'present it' with actual symptoms til now too. in that case, it would be referred to as a 'congenital(meaning "born with") disorder" or even congenital vascular malformation within the heart/ or use "left ventricle'. just some things to help look up info. again, i wish you soo much luck with this. take care hon. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Last edited by feelbad; 01-29-2011 at 09:56 AM.

 
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Old 02-06-2011, 11:07 AM   #3
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Re: my son 8yrs has aneursym on left ventricle

Hi thanks for your reply, currently still waiting appointments for mri and excercise tolrance test. i have another concern with my son i don't know if this is anything to do with his heart problem or not but i am going to mention it when we see the specialist, i have noticed all the way down his lower left leg from below his knee downwards he has a large thick blue vein which almost looks varicous(don't know if the spelling is right), i have been thinking maybe something is blocked somewhere or maybe related to his heart problem, he says it does not hurt and he isn't bothered by it. Anyway, i will keep posting on what transpires fingers crossed things will be ok.

 
Old 02-07-2011, 04:00 AM   #4
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Re: my son 8yrs has aneursym on left ventricle

thanks for the update hon. what you just mentioned about that vein very well could possibly be related in some way depending upon which area of the heart itself takes in the venous return from the lower half of his body? it would be the deoxygenated blood flow that is(trying to) returning back TOO the heart, and from his legs/lower periphery to get more oxygen since THAT just is what veins actually carry? while the arterial flow is FROM the heart and out to the periphery? i am not too familiar with the overall heart make up anymore. but you could try and check this out by searching "venous return to the heart' or get more specific with adding FROM legs BACK to heart? i DO know that the venous return goes into one side of the heart(i DO think it IS that L side but don't quote me on that one) then to the lungs when it reuptakes oxygen again then it runs thru the heart and pumps back out again within the arteries and out to the whole body again. its a bit more in depth than this tho, but you CAN find that info somehow looking at sites with images that should show you the full vascular system or "circulalatory system". i KNOW those images are out there and some really good ones too. or simply images for cardiac bloodflow should show the area where the venous actually reaches/enters the heart?

but i would "think" the two would more than likely be related just depending how much real blockage there is there FROM that annie just 'being there'? this WOULD create somewhat of a more 'sluggish bloodflow/back up into the very low pressure venous vessels so it would simply be logical, ya know what i mean?

so when do you see that specialist again? i would most definitely bring this up to him and also keep track of where it is now and if it goes upwards even higher? this would just give that specialist more of a good time frame to go by too. anything that simply 'appears' to be a possible 'symptom in him just keep a notebook and write down the date and what you noticed or he may complain of too. this seriously DOES help with his overall condition and timeline of events for the specialists. and any 'good' questions you may also come up with too? keep a notebook just sitting out like i did, on my kitchen counter at all times so i could go directly TO it and write down that really great question i had thought of ASAP, or else i would forget it kinda thing? it helps to just DO the second you think of it or it may be forgotten, i personally had some issues with THAT one, lol and THATS when that notebook came out and stayed there. its always a good thing to know what can indicate more of an underlying issue. just monitor it more closely for changes of ANY kind, K?

if that area should start to become painful, redness shows up or swelling, contact his doc asap, since THAT right there simply 'could' indicate a possible blood clot. i am only telling you this so you know what to watch for, and not that i am thinking that this just IS what is creating it kind of thing? but what i just mentioned simply ARE the usual initial 'indicators' of potential clots being involved there. and of course, the sooner anything like that gets treatment, that much easier it is to try and get rid of/treat.

i do hope they can 'do' something with this without too overly much invasiveness involved for him. i do know just from the vascular crappy stuff i have had including my own annie, that the interventional radiologists can do some pretty amazing things that are all done by snaking little microtools thru the femoral vein in the groin area and up TO the heart and the brain too. good luck hon, and DO please continue with the updates, K? take care, marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 02-12-2011, 10:35 AM   #5
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Re: my son 8yrs has aneursym on left ventricle

Hi an update so far, my son is going on Monday to have the loop monitor fitted for 1 week, i have also recieved a letter from the consultant about what they have figured out so far, the letter reads
william taps out at 200bpm,
clinically he has a vibratory mid systolic murmur at the lower left sternal edge, no evidence of cardiac arrest.

His ecg shows sinus rhythm with rather biphasic t waves in the right sided chest leads. He has sinus arrhythmia bu his ecg is otherwise unremarkable.

His echocardiogram shows a apical left ventricular band which is probably the source of the murmur. It also shows what appears to be a slightly thin walled diverticulum posterior and basal to the mitral valve. There is no thrombus in this and the significance of it is not certain.

History is slightly odd. His 24 hour tape was remarkable but didn't have any episodes during it, therefore i have requested a loop recording which will hopefully catch some episodes.

In view of the rather odd echocardiogram apperance we have to work on the possibility that he might have some type of intermittent ventricular arrhythmia. I have therefore aarange fore an mri.

I am not a medical perdson and some of these words don't mean anything to me and wondered if anyone could translate this in to a language that i could understand. There is no mention of the suggested aneursym that was mentioned in an earlier letter so i am baffeled. Hopefully things are starting to move forward as my son is having a loop recorder fitted on monday buit we are still awaiting the mri appointment.

Thanks for anyone who has replied so far and thanks for you help in understanding certain things. Has anyone suffered from intermittent ventricular arrythmia?

thanks claire

 
Old 04-11-2011, 08:08 AM   #6
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Re: my son 8yrs has aneursym on left ventricle

Hi update, my son has had his excercise tolerance test, another echocardiogram and his mri, awaiting results recieve them 17th May will let you know what we find out. c.

 
Old 05-21-2011, 12:02 PM   #7
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Re: my son 8yrs has aneursym on left ventricle

Hi latest, my son has had his mri results well kinda of! Went to see specialist on Mon 17th May the first thing she said was she only recieved the results a week ago and so has not written a report yet, we did look at mri together and she showed me what they have been looking at, she has termed it as a congenital diverticulum which she says has muscle there so this suggests that it is something that he may have had from birth. The outcome is she does not know weather she needs to treat or not yet, she has not disscussed results with anyone but she feels possiablly not as she said the blood flow around the bulge is good and my sons sats and heart rate ect are ok, she is going to see him again in september by that time she will have a full report. I am still anxious as to what may happen if left un treated, will it get bigger as he grows or will the bulge burst causing stroke/death, but then again if treated there are risks involved there too.

One question i would like to ask is "is there a differance between an aneurysm and diverticulum, if so then what this maybe?"

It is confusing as after his very first echo scan it said suggested aneruysm but no mention of this now just the word diverticulum!!!

all replys welcome C..

 
Old 05-22-2011, 07:52 AM   #8
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Re: my son 8yrs has aneursym on left ventricle

please note, that in trying to understand the true meaning of what was being referred to as the 'diverticulum" in this case was NOT the "usual" outpouching seen within the intestines. it appears in fact to be describing THE aneurysm itself. the medical community uses the words aneurysm and also 'diverticulum' interchangabley when referring to what this child has as a "left ventricular diverticulum". this particular "type" IS also something you are born with(congenital) and is considered a congenital defect within the heart.

but in more common cases, having a diverticulum or diverticula is something found within the intestinal walls as an out pouching and not what would 'usually/more commonly' be having to do with ones heart muscle. that is where this particular problem can raise ALOT of confusion. i was going to edit what i posted under here, but to do so would also take away needed info as well. so i placed this at the top here just so people would know how interchangable and different meanings certain "conditions/wordings' can have when describing particular medical conditions. if you simply look up the word 'diverticulum" itself, it more often than not ONLY will refer to an outpouching in the intestinal wall and nothing stated about having to do with the heart at all. thats where the confusion here came in. but anything anyone ever NEEDS to know for certain, ALWAYS always ask your Dr about if you do not truely understand wordings or how things appear to be after being explained to you

.

it actually appears that she is talking about two seperate things here. one is the heart, BUT, and if you go back to the post you made on the first page on 2-12-11 where it mentions that ECG, it DOES mention the diverticulum there too. it first mentions that apical L ventricular band as possibly being the source of the murmer? then it also states something about " it also shows what appears to be a slightly thin walled diverticulum(this is an actual outpouching in/of the wall of the intestines. usually small and not that uncommon in older people) located posterior to(behind the heart) and basal to(means at the very base of or lowest level of organ. in this case they are i believe relating this to the lower level of his heart in relation to where that mitral valve level is simply located but just behind it? but in the intestine, not the heart)but it ends that sentence with " but there is NO thrombus( thrombus is a large blood clot) in this and the significance is not certain".

this sounds to me like whats simply sometimes 'found' upon any type of a scan done for another reason called an 'incidental finding"? its just something that got picked up during that test that had to be mentioned only becasue it was picked up at all?

now, if what i am getting from what you stated here is correct, what they may have 'assumed" was indeed an actual aneurysm solely based upon what they saw on a scan as some type of more aneurysm-like sacular or outpouching appearance of the diverticulum that was probably not all that clear since it DOES appear to be somewhat behind the heart and in the intestinal wall. what they actually "thought" WAS an annie is just that diverticulum pouching instead. this is merely MY own take on what is here for me to read and what the words actually do mean. so do not take this a gold,K? but this IS what it appears they did see there. having anything like this pop up in any given child would almost HAVE to be of a congenital nature since she did state it had muscle in it, it would have had to have formed in utero? having good muscle in something bulging really could help i would think, since it does have more 'give' than any type of potential aneurysm would or could, thats for sure. it also has a good blood supply meaning at the very least, this outpouch is not dead tissue either. but this SHOULD NOT(under normal cicumstances, and she did NOT say anything about that either) contain any 'pouched or sacular high pressure blood like an anuerysm does(aneurysms will ONLY form within arteries, thats it). it does have a 'blood supply" keeping it alive in the intestinal wall like everyone has a blood supply within their intestines.while the diverticulum could have some possible issues, it would just not be what the more immediate life threat of having an annie would be like in THAT very high pressure blood flow area if this were in his heart or aorta and an annie? these just are two totally different things here.

i would call tho and ask his doc about whether or not they feel THIS diverticulum was what they assumed was the annie or do they STILL feel he has one at all anymore with the latest info? THAT as a mom, i would definitely want to know ASAP. and she DOES owe you a much better explanation since you did leave there not even knowing THAT much as well. but what i am wondering here is if this outpouching is bulged out just enough to actually be creating the arhythmias since it is possibly somewhat 'irritating' the heart in that more 'perfect" spot type of situation? or if it is the band they mentioned in the ECG being responsible for the murmer? but the bulge just 'may' be creating the rhythm issues. these are the things you need to find out, so make certain to write the questions down and call or wait til you see her agin. but you DO have the right to know if your child has an annie or not,that much info they should be able to tell you over the phone.

as people age, or this can be somewhat inherited too or the tendency to have what are called diverticula which are very tiny little openings/outpoucings in the intestinal walls where bits of food and other intestinal wall goo can get caught in. so its not that unusual to get, its his age and the location and potential size that could be the underlying issue here. hopefully this is what was mistaken for an annie and he does not actually have one.

but i would call that doc with thsoe questions just so YOU KNOW exactly what is and is not there in your child. esp since your next appt wont be til way the end of summer?? thats a very long time to wait to have something confirmed or denied, ya know? just tell the nurse when you call that there were some critical things that you were very unclear of when you left that you just HAVE TO know the answers to. a nurse CAN look up his file and answer the basic questions too.

i DO hope things are good as far as thepossible annie. please DO let me know how you two are doin,K? hang in there 'mom'. marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Last edited by feelbad; 05-23-2011 at 10:08 AM. Reason: there was incorrect info in a post needing explaination

 
Old 05-23-2011, 05:54 AM   #9
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Re: my son 8yrs has aneursym on left ventricle

Hi feelbad, firstly thankyou for your reply, i agree with you there does seem to be 2/3 issues, 1. murmur/arrythmia 2. aneruysm 3. diverticulum. I have today recieved a copy of a letter which the cardio specialist has written to the paediactric consultant who referred my son in the first instance.

Basically it is a run down of what happened with my son when he had his appointment on the 17th and some kind of report. The specialist has said my sons cardiac function is good, the aneurismal area has a broad base and therefore minimal evidence of clot formation.

My sons 24 hour tape readings are remarkable.

There is again a change of wording in the heading it says probable left ventricular diverticulum and then the mention of the aneurismal area, anyway she has put my son's case forward to the cardiological and surgical meeting to discuss weather any further investigations or second opinions are necessary. I am glad i have some idea now about what this is we are dealing with and your posts have been of great help and support, i will let you know of any further developments and thanks again xCx

 
Old 05-23-2011, 09:29 AM   #10
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Re: my son 8yrs has aneursym on left ventricle

glad i could help at least some hon, just so sorry that your child and you are even having to deal with this situation at all. have they 'placed" that annie in a particular artery within the heart in any report or what? i still am unclear as to where that sucker actually is located there. usually they would kind of be able to see it and what artery its simply bulged out in. but all it states is the "aneurysmal area', which really does not pinpoint location within the hearts arteries(normal place just for aneurysm to develop). there is also NO actual dimensions of the annie given either or the 'type".

and now i know why. it sounds like this is NOT actually within a specific artery, but IN the muscle OF that L ventricle(more than likely within an artery within that actuual muscle wall itself?). this just found info really makes alot more of whats been stated in reports make much more sense now

okay, i am back now after doing some searching but not using what i did yesterday in trying to figure out that 'connection' between the diverticulum aneurysm and the heart. and i DID hit on what i was needing to find here. wording and searcing the right keywords seriously DOES make all the difference in finding the right info.

it appears that what your son has going on in that L ventricle(and there IS a ton of actual info on this too, does not sound as rare as one might think actually) with that diverticulum and the aneurysm is actually one in the "same thing", just what is highly interchangable wordings of it. when the L ventricle has that diverticulum in that heart muscle as this appears to actually be from an actual 'congenital' defect, it is called a 'left ventricular diverticulum". BUT, when it becomes "aquired" like just forms after time, it is considered an aneurysm. but as i said, the really great article i was reading is where it mentions how interchangable thse two words simply get used unfortunetly. that IS really where the overall confusion really does come in. the annie appears to be IN the wall of the actual heart muscle(myocardium) but IN that L ventricle. all of the 'thin walled bulging they were referring to IS NOT AT ALL what i mentioned above as intestinal in this type of case(i DO have some editing to do up there now), but IN that L muscle wall in that particular ventricle. honestly, once i found the info, so much of what is stated and what you were told really did finally make at least 'some' better sense to me.

since there just IS alot of info on what your sons main issue appears to be here, try just searching 'congenital left ventricle diverticulum" or simply leave the congenital out and use that too and see what good solid info you will find to help you here. like i said above, using the 'right' keywords really helped me to get to what i could not for the life of me find yesterday when i searched diverticulum and heart. got nothing really BUT the diverticulum that forms in the intestinal wall? strange really.

it sounds like they ARE doing what needs to be done by getting his medical info to the right people there, so that really IS huge for the both of you. i just wish i could have gotten the right info up before this one,ya know? sorry. but i am going to edit that particular post out of anything i KNOW now does not pertain to what this actually 'is' so i wont inadvertanly confuse anyone else like i am probably now doing to you hon. sorry bout that.

the one thing i really am wondering here tho is they do not show any actual dimensions of what IS the actual aneurysm, other than it has a broad base? that IS one thing you really do need to find out.good luck and please DO keep me posted hon,marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 08-07-2011, 11:02 AM   #11
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Re: my son 8yrs has aneursym on left ventricle

Hi sorry i haven't been on before now been abit hectic, thanks for you reply feelbad you are very thoughtful and thanks for the reseacrh you've done. I will update so far we got a letter come 2/3 weeks ago from the cardio paediactric doctor who is envolved and she says that she has now had the cardiolocial/surgical meeting regarding my son she says that they wan to look more closely at the coronary arterys comming from his aorta alittle more closely so she intends to give my son another echo scan in september she has also mentioned that she is going to have a word with a heart rythm specialist to see if there is anything that she may be missing on his heart readings and weather there is anything more that needs doing in that respect.
It was quite reassuring that they are still have him in mind, i have got questions to ask her when we go in september like is this diverticulum/anerusym going to grow as my sons heart grow and how this my effect him in the future, also i am going to ask the size of this aswell,. Thanks again for your reply, i will post again when i have seen specialist in september kind regards C x

 
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