Aneurysm... inoperable?

[JenVT]

Hi,
I am a 33 year old female in good health, I was just diagnosed with 2 aneurysms, the small one (2mm) is located in the right side of my brain, not sure of exact location ( which is easily treatable with craniotomy per my neursurgeon), however the bigger one (8mm) is located on the left carotid artery, it is just barely outside of the brain in the cavernous sinus and my neurosurgeon told me it was inoperable and I would have to wait for it to burst before they could do anything.  I guess if they were to operate I would lose my eyesight in left eye because the aneurysm is surrounded by all the optic blood vessels/nerves, however if I wait till it bursts I still will lose my eyesight.  Neither option really satisfies me so I have another appointment scheduled to see the neurosurgeon again and an interventional neuro-radiologist.  I have read up on all this and I feel there are other ways to fix this aneurysm when operation and coiling are not an option, I have heard about putting a covered stent in, balloon occlusion and bypassing the artery.  My question is... Is this aneurysm treatable in your opinion, or are there any other options for treatment that I should know about? Are there any specific questions I should be asking my NS or the INR?  I need to know that I have options, because "inoperable" and "can't be treated" are not options for me.
Any input and assistance would be appreciated in this matter.
Thank you.

[CCFNeuroMD JT, MD]

Dear JenVT,

Thank you for your question.  I must preface my answer by stating that it is important that you recognize that my impression is based entirely on the information you have provided in your posting and is by no means a substitute for an office visit with a neurologist or neurosuregeon.  Diagnosis is contingent on detailed history and physical exam and as such, the following information should be considered solely for educational purposes.  In your particular case, a review of pertinent imaging (i.e. conventional angiogram, CT angiogram, and/or MR angiogram) would be especially Also, type of  helpful to me in assessing the reason your aneurysm has been deemed inoperable.  Also, aneurysm type (such as saccular or pedunculated)As I am unable to review these studies, I can only muster a guess as to why your surgeon has told you that he cannot operate.  My inclination is that he feels the risk of surgery outweighs the risk of holding off on surgery and observing.  Of course, the risk that I speak of is rupture of the aneurysm which could cause a subarachnoid hemorrhage (SAH).  Perhaps a little bit of background will be helpful.

At present, there are still very limited data in the realm of management/outcome of unruptured aneurysms.  Perhaps one of the biggest studies to date was published in 1998, the "International Study of Unruptured Intracranial Aneurysms (ISUIA)."  What this study did was it looked at patients with aneurysms and divided them into 2 groups, those with SAH and those without SAH.  It then looked at certain criteria such as patient age, aneurysm size, and aneurysm location.  What the study showed was that in patients with an aneurysm less than 10mm in size who have not had previous SAH, the annual risk of rupture was 0.05%.   Moreover, patients who harbored aneurysms in the top of the basilar artery, vertebrobasilar junction, posterior communicating arteries, and posterior cerebral arteries were more prone to aneurysmal rupture.  I know that this is a lot of anatomy, but basically, these are all arteries that feed the back of the brain whereas your aneurysm is located in the cavernous portion of the carotid artery which feeds the anterior portion.  Hence, the risk of spontaneous rupture in your case is perhaps even less.  

Because I am not a surgeon, I cannot counsel you with respect to the various different surgical procedures available (i.e endovascular vs bypass).  As I stated earlier, the neurosurgeon you have seen prior would rather monitor your aneurysm at this point rather than operate, likely because he feels you the risk associated with surgery is higher than the risk for spontaneous rupture of the aneurysm.  I hope this information is helpful to you and I wish you the best of luck.

Sincerely,
JBT, MD

[shag469]

It may or may not be treatable, but what I have learned first hand is that when a surgeon tells you something "cant be done" or in my case "can only be done this way" really means thats the only way they can do it at THEIR institution...Look up www.skullbaseinstitute.com or www.drjho.com for starters

[Smak750]

I am really interested in what was going on that you had a MRI or whatever to see if you have any problems.

Also I agree with shag: Sadly it could come down to money, but there is probably a surgeon out there that could operate successfully, but I would think there is a serious insurance concern in your case of suing.

-Good luck, and please post back what eventually happens.

[JenVT]

Well it all started out with having daily headache for the last 1 1/2 yrs, first went to an optometrist to see if it were my eyes, prescription did double but did not help out the headaches. Then I went to a replacement for my GP cause he was out of office, and she figured they are probably just tension headache which I told her they weren't cause I have had those and these headaches do not feel like that. Told her also that my mother has had aneurysms ( which were clipped), and she just said I was too young to have aneurysms, which showed me she was very knowledgeable. Anyhow.. she referred me to a neurologist, who then set me up with an EEG, the EEG showed a slight abnormality in the right side of the brain, which then he set me up with an MRI and MRA, and that's when they found my aneurysms. I was then set up for a CT angiograph and the visit with the neurosurgeon.  However I was told the aneurysms are not causing my headaches... hmmph
Various blood tests also showed that my Thyroid level (TSH) was low (0.02), and had a radioactive iodine scan showing a 2cm hot nodule (toxic adenoma) in right thyroid lobe. Already saw specialist for that, who feels this is also not causing the headaches or symptoms... hmmph  No treatment for that either currently, another blood test in 3 months and see specialist again in 6 months. Which is fine, but these aneurysms I do want to have taken care of, especially because there is a family history of them. If this next set of appointments is not getting me anywhere I'll try to get a referral to another place, even though this place is already 3 hr drive one way, the next closest place is 5 hrs away one way.
Sorry just made a long story even longer, anyhow that's how they found the aneurysms and why they did all the scans etc. :)

[Smak750]

Great thanks for taking the time to post all of that. You don't seem very worried at all. When I think of brain aneurysms and your earlier post about waiting for them to burst, I was thinking that was odd. So there is no chance of death from these?

BTW, why does it take so long to get anything done?  Months in this case!
Ugh

[JenVT]

Well from what I have been told, if the 8mm aneurysm on the left carotid artery in the cavernous sinus bursts I probably would go blind in my left eye, and maybe some nerve damage along the left side of my face, supposetly this one should not cause death because it is located "outside" of my brain, not in it.  The small one 2mm is located "in" my right side of the brain, therefor that it is still very small it has a low chance of rupturing, however if that one were to rupture it could cause death due to it being in the brain.  At least that is how I understand it, but I am not a medical professional. Trust me I am worried, quite freaked out even, my neurologist put me on anti anxiety/depression meds, whom I have to go see today and he'll probably up my dosage.  I definately do not want them to rupture, hence I set up more appts with neurosurgeon and interventional neuro-radiologist, I am not going to take the "inoperable" and "can't be treated" answers and just go with it and wait. From the point where I saw my optometrist to where I am now it has taken almost 6 months, due to waiting till the scans were available to when the docs have openings, it takes a minimum of 4 weeks just to go get an appt with the neurosurgeon. The waiting is definately taking it's toll on me.

[Smak750]

It seems like every day we see and hear how medical science is doing amazing things. I really hope you find someone in the field that can help.

I sympathize with the waiting game, and if it wasn't for some of the drugs that are out there I would be worse then I am now. I blame a small part of my anxiety on the medical industry not being able to diagnosis and begin proper treatment in a timely manner for what I am told are common problems. Please don't give up, and keep fighting!

-Adam

[JenVT]

Oh, I won't give up this fight that easily!
I did see my neurologist this morning, and he is doubling my dosage of the nortriptyline, and once this dosage is in my system he feels we will need to up it again, but he wants to go slow to make sure I won't have any side effects. So I'll have to go see him again end of December. Hmmm he actually wanted to set me up with another "specialist" to have someone I could just "talk" to, which I declined. With all these scans/appts etc. I have and will be taking enough time off of work, don't need anything extra on top of it.. a gal has gotta make a living :)
I do agree with you regarding the medical industry/anxiety part.  The waiting, the not knowing etc is tough on anybody I would assume. Or like with me, the neurosurgeon told me to call him the week after my last appointment, because he was gonna present my case to a panel of doctors for more input, and he said he would call me back. Well that was beginning of October, I have called there and have asked 3 times now for him to call me one way or another because I have questions and concerns.... nothing... not one peep. All I ever hear is.. oh he is in surgery, or he is booked full with appts and won't have time to call you etc. So I had my neurologist write them a letter to get in touch with me and maybe have some more appts... next i know I got more appointments, but no one has called me still. However come to find out today, my neurologist has already talked to the interventional neuro-radiologist, which I have not met yet. Hmmm.. shouldn't they be talking to me? I don't care who they talk to but I would think I should be included somewhat in these conversations !?
Well anyhow... this is the only other update I have for now.
Thanks for your input by the way, appreciate it :)

[rbeckner]

You might consider consulting the Barrow Neurological Institute?  They have several surgeons that specialize in giant aneurysm treatment (coiling, oblations, excisions) and see people from all over the world.

[JenVT]

Thanks for the info, I did check out their website.  Arizona is just a tad too far for me to go, as much as I would love to get out of this cold winter weather, I would not be able to afford that flight or the time off from work. After my appointment next week I will know more, well mainly I will know if I'll need a referral to go somewhere else because they can't/won't help me.
Thanks for the websites, am always in search for more info :)

[1jitterbug]

Somehow the doctor must of missed your question. Wonder what happened?

[CCFNeuroMD JT, MD]

I apologize for the mixed-up sentences in the first paragraph of my reply.  That particular section should read as follows:

. . . In your particular case, a review of pertinent imaging (i.e. conventional angiogram, CT angiogram, and/or MR angiogram) would be especially helpful to me in assessing the reason your aneurysm has been deemed inoperable.  Also, aneurysm type (such as saccular or pedunculated) as well as other factors such as presence of clot or atheroma within the aneurysm may play a role as well. . .

[Carol215]

I am a survivor of 6 aneursyms.   I had four brain surgeries in all. Two they called coiling and 2 open brain surgeries, clippings.  I was only 40 when I was diagnosed.  Three weeks after the first surgery, my husband of 17 years, was killed by a train.  It's now been 3 years and I am doing great.  I had a stroke with the second surgery, and that took a lot of therapy.  The most important thing you need to remember is to find a doctor that you are confident of and comfortable with.  Mine was amazing!!!

[uniquefacesinc]

A related discussion, 24/M Anerysms of both internal carotid arteries of cavernous section. PLEASE HELP! was started.