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Old 09-12-2009, 07:52 AM   #1
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Holy toledo Batman - its an aneurysm!

For those of you that have seen my various boards, I have been searching for over 6 years to find out whats wrong with me.

It started out as stroke symptoms, then MS. I've had 2 MRI's, ENG, EEG, Lumbar puncture, 2 Cat scans, countless blood tests etc. No matter where I turned, I just could not find someone who could tell me what was wrong. My last CAT scan was 2 years ago and I was told at that time it was a "Veinous malformation" - however, the actual report suggested annuryism, but my Neurologist said it was only a malformation I was born with.

Fast forward 2 years later, I wake up with the worst headache (I never get headaches) and Nystigumus. The ER doctors wanted to follow up with a Cat scan after reviewing my files - I was taken in immediately. For those that know the Canadian medical system - it takes months to get a Cat scan or MRI. I was then given a referral to a Neurosergeon - 3 weeks later. Again, another first for me.

Went to see him and he said "so has anyone told you about your annuryism?" I explained that I was told it was a malformation - he looked puzzled and again looked at the Cat scan, took out his stethescope and held it to my head. Explained that malformations make a noise and mine does not, giving even more justification that its an annuryism. I am going to be scheduled for an Angioplast shortly.

So, the location is the right front forehead - I think I saw it on the Cat scan as being 4 (mm? or cm?) long. I'm 46 female - Many symptoms I've suffered and am amazed that for 2 years, I've had this in my head and nothing was done.........

Just wanted to vent - any insight from those that really understand?

Thanks!

Symptoms:

Chronic vertigo/balance issues resulting in numerous falls
numbness in hands and feet
Raynauds
numerous cognitive issues - early dementia?
restless legs
joint and nerve pain
Major depressive disorder including suicide attempt
erratic behaviour I cannot explain
__________________
Diagnosis:

Chronic Vertigo
Fibromylagia
Major Depressive Disorder
Peripherial Neuropathy
Vascular/Veinous malformation behind right eye
Raynauds
Restless Leg Syndrome
Neurological disorders

 
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Old 09-12-2009, 11:03 AM   #2
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Re: Holy toledo Batman - its an aneurysm!

I'm so sorry your having such trouble, I'm also glad your getting some answers. I to am in the middle of the testing, waiting game. You were talking about the wait for ct and mri, its the same for me down here in the states, we have plenty of machines but getting it thru the insurance company is another story. I had 3 mri's last year and it took weeks and letters and phone calls for my neurologist to explain to the insurance company why I really needed them. Took 3 months everytime. Everything has been a fight with them, even presciptions, which they won't pay for. I'm going broke.
I really hope things work out for you, I know its all scarey. I will keep you in my thoughts, good luck.
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Fibro,neuropathy,TN, failed acdf 3 level, stenosis of the spine, cvid

 
Old 09-14-2009, 07:49 AM   #3
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Re: Holy toledo Batman - its an aneurysm!

hey NB? has anyone actually thought to just do one angiogram on you to really see if this IS a veinous fed lesion or an arterial one? or is this what you actually are referring to with what you stated as an "agioplast"? i think you may have just heard that word wrong since an angioplasty is a whole different procedure for a totally different reason.

there are a few different types of actual vascular malformations we can end up with not only in the brain, but within the spinal cord too. i honestly do NOT get the stethescope thing and how malformations make a "noise??? thats a new one for me and i have extensively researched vascular malformations and aneurysms too since i was born with the veinous type actually IN my spinal cord and then in 05 ended up being Dxed with a brain aneurysm too. i would think having the high pressure aneurysm make some noise would be much more likely if you could even hear it at all? tho whenver blood is being forced thru any of our vessls and there is 'something' kind of 'in' a vessel or it is just malformed, if it was close enough to the skin you could hear what are called 'bruits'.but this is just more likely to be heard if you had a problem say, within the neck or anywhere else that the vessels involved are simply closer to the skin surface. it just changes the blood flow velocity. i would not put much stock in anything that the doc mentioned about anything either being heard or not heard when it comes to something within our brains. too many other factors can change anything up there.

you could possibly have what is called an arterioveinous malformation which could consist of both an artery and vein being involved. since one is always ment to be a low pressure vessel and the other a high pressure, there should never ever actually be ANY direct connection between the two. this is just one of the few different ones. i had in my spinal cord what is called a cavernous hemangioma that like i mentioned above, i was actually born with in there up at around the C 7 T 1 level. the only real way to tell just what types of vessels actually 'make up' the lesion in your brain would be with a good contrasted MRI being done. or if this just IS a true aneurysm with an angiogram. an arterial malformation such as aneurysm would simply really 'light up, vs the veinous fed that since it is not a part of the arterial structures up there, would not. my MRI that found my lesion in the cord at first stated it WAS an arterioveinous malformation up til we did the angio and it did not light up. that is when they changed my real Dx to the hemangioma.

i am just truely shocked at allll the brain tests you had done during this period of time and no one could actually find an aneurysm or looked deeper into the veinous fed finding to at least make certain just what this really consisted of? that really IS appalling to have to go thru and really get nothing? why soo many CTs? that one just does not make any real sense to me. CTs just only show so much and are no where NEAR as good as seeing vascular malformations like an MRI with contrast would be.

but if this is only the 4 mms it could have been hidden like my aneurysm was only upon the actual MRI. mine was right at the bend off an artery just making mine harder to really detect. i ended up having what is called a 3 tesla scan that uses three times the magnetism of a regular type of MRI and along with that an MRA too. that is when they finally saw it.

hopefully what ever this actually is,you will be able to get it coiled instead of having to go thru an actual craniotomy. the coiling is what they did with my aneurysm and i have had no problems at all. very minimally invasive procedure i just had done on a monday, spent that night in the ICU for monitoring, then went home the very next afternoon. this is done by a neurointerventional radiologist,the same person who will do your angiogram? it is all done just going thru the artries to your brain starting at the femoral artery within the groin area? just amazing what these types of specialists can do with anything vascular.

just make certain that they fully inform you as to what this malformation actually is EXACTLY,then make sure you get ALL possible options fully explained too. alot of what can or cannot be done in some cases depends alot on how that actual aneurysm looks. if it has a neck on it, you are in luck and could have just a coiling done. if not, they may have other possible options now too. but just make sure that YOU just KNOW everything you need to. getting all of your own copies of all your own radiology reports really is rather important too, just so YOU have your own copies yourself. this is just a part of your medical history.

i do hope things turn out okay for you. please let me know how things are going. if you have any questions, just hollar. 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 09-21-2009, 08:59 AM   #4
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Re: Holy toledo Batman - its an aneurysm!

Thanks byoung6 and marcia. I really don't have any answers, as I waiting for a call back. I assume he was going to do an angiogram - to confirm its an anneurysm. Marcia - didn't think about the difference between Vein vs. Artery. I was just so thrilled that I was finally being given answers - vs. Duh, I don't really know.

I think some of it stems from the original Neurologist - he was in his last year before retiring. ****** that I asked for a second opinion - then even more ****** when I demanded that he order the Cat scan that the second Neuro suggested. He mumbled, covered his lips while talking - knowing full well, I'm hearing impaired and read lips. He was the one however, that taught me to get copies of all reports - if I hadn't, I would never have known that something suspicous showing.

So, Marcia - can you explain the difference between MRI vs MRI with contrast??? Do they use a dye with contrast like the Cat scan? I'm not sure which one I had done, so I'll have to read my report. Is a Tesla 3 MRI the same as a PET scan? I'm still trying to figure out the difference between the different machines/tests. Also, if a Neurologist finds something suspicous like this - would he send me to a Neurosurgeon or would he do the angiogram himself. I have never heard of a "neurointerventional radiologist" - so not sure how its done here. As far as the hearing a noise issue - he said as he does not hear anything, it is "unlikely" that it would be a malformation. However, he did say, if it ends up being a malformation - there are options to help and the Neurologist said there was "nothing" that could be done.

Yes, its shocking the amount of tests I've had and only just now finding out answers. I'm glad that certain illness have been ruled out - however, going 2 years with a possible aneuryism and no one even telling me really boils me up. This Neurosurgeon thought I had refused to get the angiogram done thats why nothing had been done in 2 years - I explained that I was not given the info so could not have given a decision. All the more reason to get copies of everything. I found an error in the ENT's notes saying "patient says hearing is getting worse, and had normal hearing before" - however, I was born with congenital nerve damage and only recently have started loosing my hearing. No wonder he didn't do anything either .

Byoung6 - I hope you are able to find out soon. I hate fighting with the insurance companies. I'm still fighting with mine to get my long term benefits. The last time I went out - they ended up granting me my benefits 5 months AFTER I returned to work - and only because I had attempted suicide and they had to give me based on Psychiatric vs Neurological. They are trying now to say, as I am not depressed - therefore I'm ok to work. Which came first - the illness or the depression? I know which one did. This time however, as my return to work was not sucessful - I know I can no longer work in my job or any other occupation - I'm fighting it till the end.

Marcia - wow, you know your stuff. I just goes to show, we have to become educated in medicine or else we won't get the answers.

I thank you for your replies and thank you for your prayers. I am so glad there are so many caring people on this board. Again thanks!
__________________
Diagnosis:

Chronic Vertigo
Fibromylagia
Major Depressive Disorder
Peripherial Neuropathy
Vascular/Veinous malformation behind right eye
Raynauds
Restless Leg Syndrome
Neurological disorders

 
Old 09-23-2009, 08:13 AM   #5
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Re: Holy toledo Batman - its an aneurysm!

Ok, Marcia, I brought my reports in and maybe this will help you understand the different types of MRI's/Cat scans done.....

01/15/07

MRI Head - data sets that include sagital T1, axial T2, axial proton density, coronal FLAIR, diffusion weighted imaging and apparent diffusion coefficient were obtained.

No abnormality has been demonstrated in the paranasal sinuses, the globes, the orbits, the nasopharynx, the oropharynx, C1, C2 or the proximal cervical cord. The brainstem, the midbrain structures, cerebellum, CSF spaces, the ventricles, the corpus callosum and the pitutary gland are normal.

On the coronal FLAIR, the focal areas of increased signal present in the left parietal lobe and the right parietal lobe are non-specific findings. These can be seen with hypertension, ischemia, infarction, diabetes and migraines. The number of foci are not sufficient for a diagnosis of multiple sclerosis however, a demyelinating disorder cannot be excluded.

10/19/07

CT Circle of Willis w/Contrast (includes Head w/Contrast)
CT Angio of the circle of Willis

No abnormality of the posterior circulation, no midline shift is shown. The vertebral arteries have symmetrical appreances and are about the same calibre.

An unusual finding is shown in the anterior circulation. Initially I thought there was an aneurysm arising from the region of the genu of the right middle cerebral artery however there are abnormal vessels shown in this region immediately anteriorly to the first intradural part of the right ICA. The each ophthalmic artery looks normal. There is however another vessel that I think arises atypically from the internal carotid artery and then extends forward into the anterior medial part of the right temporal fossa near the area of the superior oribal fissure. Here a fusiform dilatation of the vessel is shown. There may be early draining veins here as well. Several smaller vessels have the fusiform vessel are shown. One of these vessels I think derives from the M1 segment of the right middle cerebral artery and then extends forward into a lesion near the superior orbital fissure.

Because we are seeing both arteries and veins simultaneously here at this state in the study it is really hard to know if we are dealing with an aneurysm or a varix to account for the abnormal appearance.

I would recommend that a catheter angiography be done

________________________________________ ___________________

Ok, I seem to have not brought in all my reports. I have another MRI report that reads very similar to the one I posted.

So, I'm waiting for my follow up with the Neurosurgeon.

Thanks!

Clare
__________________
Diagnosis:

Chronic Vertigo
Fibromylagia
Major Depressive Disorder
Peripherial Neuropathy
Vascular/Veinous malformation behind right eye
Raynauds
Restless Leg Syndrome
Neurological disorders

 
Old 09-24-2009, 07:57 AM   #6
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Re: Holy toledo Batman - its an aneurysm!

i new, sorry i did not get back here sooner, too much crap ya know? from just the description of that finding there, fusiform' has to do more with the actual 'shape' of the malformation or appearence upon the scan type of thing? so it in and of itself is just a description of what the interpretting rad is seeing upon your films.you can have fusiform aneurysm and fusifom types of other vascular malformations too. like i said,o nly a description of how it looks.

there are just a few different words(atypical, abnormal, fusiform dilation, early draining veins and the most pertinent "both veins and arteries") here that are used that lead me, (i AM NOT A DOC) to believe that whatever you actually have up there just fits more with possibly a form of the arterioveinous malformation i mentioned? this is the type of malformation that contains BOTH arteries and veins? but it does recommend having that angiogram done and that would be able to really tell just how this is really structured with real arteries and some venous smaller vessels. veins just dont show up upon agiogram, so that would show the higher pressure light up in the arteries? but in order to really show both veins and arteries at the same time a contrasted MRI would actually show both. but those higher pressure arteries is what they really need and want to see most with this since they can create the most issues in the brain.

an interventional radiologist is the type of doc who would do your angio for you and if this were to be "fixed", which in this type of finding could take a neurosurgeon AND that neurointerventional radiologist i mentioned above, or a vascular surgeon? first they just really NEED to fully define this malformation,then they work between themselves to try and come up with the very best ways to try and reduce the danger of having this since they can at times bleed. but that could be a tiny ooze from the veins or a bigger bleed from the arteries too. they are just, as with aneurysm too, very unpredictable when it comes to possible bleeds taking place. but the smaller they are, the less chances of a spontaneous bleed. while it still can happen occasionally, this still is lower risk for one based upon overall size.

i would simply do a little research on vascular malformations(espescially the arteriovenous type), angiomas, cerebral malformations and aneurysm and just familiarize yourself really as to what all the possibles are and the terminology that may be used to give you info and that you may hear as well. this way you will at least have somewhat of an understanding when you need to speak with the docs or interpret results like the above on any scan too. like i had to do when my bizzarre vascular malformation was found inside my spinal cord, you just hit the net and research the heck out of what you just need to know in order to make the best informed decisions for yourself. knowing exactly what it is you are dealing with REALLY helps TONS or believe me i would not be telling you to just do this for yourself.

i am just curious here, did the "vascular malformation' you were told about, get found upon a contrasted CT or a contrasted MRI? or was what you just posted above the "one' (actually only a contrsted CT? or am i wrong there?)test that actually found this?

just an FYI for ya incase you don't know what that circle of willis actually is? anytime they refer to this when speaking, they will call it the "COW"? this actually IS your main 'circle' of the main arteries that circles the inside at more of the top of the brain(kind of like a crown) that are the main larger arteries that all the other arteries kind of 'branch off' from? it runs in that circle for one huge reason. its kind of a default or the "failsafe' way god simply created those main arteries within the brain for. so if one particular area gets kind of "cutoff" by "something" or flow velocity is damaged or impaired the 'whole" arterial flow within our brains STILL continues on as normal. it just reroutes the blood supply and compensates since it runs in the circular pattern. its actually kind of a neat way the brain is set for OUR safety incase something occurs within one area of the cow, it still flows kind of thing? just an interesting tidbit of info for ya.

ya know,i have never really had an actual PET scan so i really am not too familiar with that or just how it even gets its scans. you can look that one up and i am sure you can find info on it. and as far as a mere neurologist REALLY even knowing just what really are all possible treatment options? you have to consider the very limited real hands on experience that any given neuro only has here,ya know what i mean? i am sure this guy you saw knows a pretty minimal amount of info as to what any really good neurointerventional rad can do with simply working within the actual malformation itself all from the inside? these specialists can do sooo much when it comes to anything vascular and it just is all done from inside with the only real 'cutting' being a very tiny incision right over that femoral artery in the crease of your groin area? but some types of maformations, and that really is dependant more upon location within the brain and what actually needs to be done kind of thing,will also require the help of vascular surgeons or neurosurgeons too. like i said, alot of differing factors would dictate any treatment plan or options too. if you are going to be needing that angio, trust me, you WILL get to meet a neurointerventional rad who will be doing it for you. they will be able to tell alot from this test.

but for now, like i mentioned above,just really reserch this thing as much as you can so you can simply familiarize yourself with certain terms and knowledge to make the best possible treatment decisions for yourself. believe me, i am sooo glad i did when this was a spinal glob thing and a couple years later also an aneurysm thing too. i seem to create alot of insane things in my body. yippie. but DO keep me posted hon, and good luck with this. hopefully they can get this safe for you with minimally invasive treatment. please continue to keep me posted, 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.

 
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