Confused

[BAlive]

I am a 28 year old male.

Ok, so last year at the end of June 05 I was diagnosed with having a cranial aneurysm located behind the eye in my left carotid artery that was large enough to crush my 6th cranial nerve causing temporary (several months) vision problems as well as damage to part of my skull are the sphenoid bone. It was successfully coiled and after recovery most things are fine. But on and off i suffer from centralized headaches mostly in the back of my head like as if someone hit me with something. I also suffer from fatigue and have alot of dizzy spells. I also have had increasing problems with my legs, ranging from slight numbness to pain in my thighs almost along a straight line.. I returned to my neuro surgeon several times over the past several months and did not receive any helpful information. To be perfectly honest I received better aftercare instructions after getting a tattoo than I have received from my Doctors after having my surgery. They continue to blow me off and have no answers to any of my questions. When I do get an answer its something like "Oh, don't worry about it, let us worry" or "I don't see/feel that there is any connection". Because I had no insurance during the time I was in the hospital ($200,000 + medical bills) and the fact that because they were originally working on a some what charitable basis,they arent making any money from me and now they just really don't care too much about me at this point.

I'm not sure what to do. I now have insurance but because of the standard exclusionary periods that go along with most insurance, I cant get any treatment or visits related to my anurysm covered. I'm worried that my symptoms may be a sign of something serious. So, what should I do? Any advice?

[cindybear]

Hi,
I also have my nerve damaged -trigemenal nerve or the 5th cranial....I have alot of horrible pain behind my left eye...temple area..But my aneurysm was unable to get fixed...WE tried but I had a stroke and allmost died..So I still have this monster in my brain ---still pulsating on the nerve with every heart beat....There's not much they can do...Unfortunately, I'm disabled from the pain...I just take morphine and methadone and some seizure medicine and it all helps it from a 10 down to a 5...I'm thinking , maybe some seizure meds would help you..??? settle down that nerve..You should get a Doc that cares first..Even if it's a PCP...Hugs, Cindy

[pamuk]

Hi there,

I am sorry to hear of the difficulties you are having and I can understand how you feel, I am going through the same myself and feel equally frustrated by the answers i have been given, at the moment I am persisting in my quest for answers to my questions - I think this is probably the only thing you and I can do now - the most important thing is not to give up you deserve an answer.

I had an unruptured annie in the left carotid artery coiled last June,(05) so our annie location and surgery dates are about the same. I have battled on for the last few months to try and get answers to my symptoms which although improving concern me (intermittent blurred vision problems, pain behind the eye, pain the the back of the head, light headedness, fatigue and some joint pain - it all sounds a lot, I really dont like complaining about it and it is improving but never the less it still concerns me). I have been told by my an doctors not to worry, and they are not worried. I have been told like you that the problems I have now are not connected with the surgery!. I have had brain scans which reveal all is well with the surgery.

I have come to the conclusion that neurosurgeons focus only on what they have operated on, if that looks fine well then everything is fine, when they say the symptoms are not related to the surgery I think they mean that they have looked at the surgery (coiled annie) site and it is fine, nothing is wrong with it that could be causing these symptoms. What they are not doing is taking into consideration the overall effect the procedure has had on the brain and this wont show up on a scan!. I also think there is also the element of not knowing even the worlds most eminent neurologists will admit there are still mysteries to be solved with the brain.

In the past year I have had MRA/MRI check ups which have revealed no cause to my symptoms. I have been referred to an opthalmologist who tells me there is nothing wrong with my eye and he cannot give a reason (other than as he says it is neurological but he doesnt know the neurological cause)
why I can get blurred vision in my eye or sometimes pain when I am moving they eye - all the tests are normal. Now I am waiting to see a neurologist again.

I think if doctors cantsee anything on a scan or a test then they dont have answers. I have come to the conclusion that my problems are just a result of
what my brain went through in the coiling procedures on the unruptured annies and I hope in time the symptoms will go, this may be the same for you.

Have you had your Blood Pressure checked out? My neurosurgeon likes me to keep my Blood Pressure on the low side of normal - I am given tablets to bring this about and sometimes I think the high medication is responsible for the lightheadedness - if you are on medication it would be worth getting them to check it out - it may need changing.

Like you, the lack of answers got me thinking it was all due to money - although my healthcare system is different to yours - I live in the UK and patients get free medical treatment - however, all our hospitals have a budget and all the patients treatment bills are totalled up and if the hospitals go over their budget the hospital is in trouble- as you know neurological patients incur high bills! so we have our "money element" here. I think however, it is a case of them not knowing, not wanting to give answers they are unsure about etc, and yes there are times when I have thought that the doctors have given up on me, dont care at this point . I do try and think well yes, everything shows on the scan I am ok maybe it is just a question of time.

Hope this helps, dont give up

pam


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[BAlive]

Wow, yes thank you Pam your reply does help. I feel better knowing that i'm not alone with the problems I am having. I am also glad that I found this board, just knowing that there are others out there and hearing their stories makes me feel better.

My blood pressure checks out normal everytime and I am not currently on any type of medication, which perhaps I should be.

I recently changed jobs so I have have to wait for my new insurance to kick in but when it does you better believe i'm going on another quest for answers. It gets really scarry at times. The past few days i have been having a swelling sensation throughout my head, not so much like a headache but almost like alot of pressure coupled with dizziness. This freaks me out. But I know if I go to my current neurologist i'll wait in his office for 1.5 hours be told that everything is fine and they don't see a connection and then be asked if I can arrange to start making some kind of payment...

So, I continue my quest...

[pamuk]

Hi there, yes that is the symptoms I get, like a pressure feeling with pain behind the eye and in the head, the pain always starts as a sort of pressure feeling, I can also get lightheadedness with it, they brought my MRA scan forward to check it out and it was all fine, it is worrying, but they all say dont worry!!!, I wonder if it could be getting used to the surgery - i.e. before hand the annie was soft tissue, now although it is still there it is packed with the platinum coils, so I guess it weighs more than it did before, the risk of rupture is removed because it is now occluded (that is why they say dont worry) but the pressure is still there, hopefully one of us will find out


take care

pam

[BAlive]

It sounds as if me and you have had similar surgery... Yes hopefully we can get the answers we need

[annie2105]

:) I am a 26 year old female. I had a rupture that was clipped then a second rupture that was coiled then clipped and a shunt (very long story). I had random headaches when I was healing and I get some leg numbness when I sleep and I am told I have carple tunnel (sp?) so the tips of my fingers in my left hand are always "numb". My doctors always tell me "it is a function of my brain". Not sure what to tell you but don't give up and don't ignore things that could potentially be harmful to you. My annie that was coiled continued to grow so this isn't "fool proof". The doctors are there and paid to listen. Take advantage of that when you can. Blessings on your recovery!

[BAlive]

Well, called my neurologist/neurosurgeon and surprise surprise, same line he gives me everytime... "It's probably migranes" and he put me back on pamalor/nortriptyline.... Yep cause that worked the first time... I am very frustrated at this point.. I had severe migraines prior to my surgery and it was nothing like what i'm feeling now with the constant head pain, dizziness, and numbness.... It's seriously time to find another doctor....

[ctapk]

Hi there, yes that is the symptoms I get, like a pressure feeling with pain behind the eye and in the head, the pain always starts as a sort of pressure feeling, I can also get lightheadedness with it, they brought my MRA scan forward to check it out and it was all fine, it is worrying, but they all say dont worry!!!, I wonder if it could be getting used to the surgery - i.e. before hand the annie was soft tissue, now although it is still there it is packed with the platinum coils, so I guess it weighs more than it did before, the risk of rupture is removed because it is now occluded (that is why they say dont worry) but the pressure is still there, hopefully one of us will find out


take care

pam

Hi Its been two months since my coiling. I just went off the blood thinners and am noticing my headaches are getting worse. Three days in a row its been a constant throbbing and vision is squiggy. I'm wondering if it has something to do with not being on the blood thinner meds. I have another aneurysm on the opposite side that they still need to fix. Scarce me to think I'd have these horrible headaches on both sides. I am wondering if migraine meds might work. thanks

[hstupno]

Wow, it sure sounds like you need a new neurologist. I agree with PamK that neurosurgeon's won't answer those questions for you. My neuroradiologist literally told me to see a neurologist to answer my other questions that weren't directly related to the coiling. I'm in the process of finding one.

Since you have insurance NOW, I would think you could get some references to another neurologist who might listen to you. Of course, you'll have to go through the whole story again with him or her, but it could help you live you life without pain/numbness on a daily basis...and you have every right to demand that of your Dr's.

H

[pamuk]

Hi there Balive,

Just read your last post from October, was interested to know how you were getting along as we had the same kind of annie, same surgery dates and same post op symptoms and the same difficulties with lack of understanding with the medical profession. I saw a neurologist a couple of weeks ago and got the same reaction as you got as mentioned in your last post. I did go to great lengths to say I did not recognise the symptoms I get now as Migraine.
He said to me that it wasnt anything else so it just would be migraine!!, and he has suggested a different medication, so I am no further forward, how are you getting along

pam from england