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  • Just diagnosed with a cavernoma or cavernous hemangioma.

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    Old 07-28-2006, 10:45 PM   #1
    RubyBluebird
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    Just diagnosed with a cavernoma or cavernous hemangioma.

    Dear All, I am new to this board. I am looking for a place to get some answers and support for this current "speed bump on the road of life". I passed out at dinner two weeks ago, was taken to the emergency room where they did a cat scan and determined I have a brain tumor. I was rushed to the University of Iowa Hospitals where they did an MRI and determined that it is a cavernoma or cavernous hemangioma. Non-malignent so that is good. But because I passed out they say that I had a seizure and so I cannot drive for 6 months. I sell houses so this has really put a damper on my life though I have been blessed to have a readily available chauffeur. The Big U is talking radiation but I do not go back until Aug 22. Any input will be gratefully appreciated. Sincerely, RubyBluebird aka Susan
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    Diagnosed with an inoperable cavernoma July 2006. Had MRI. RubyBluebird

     
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    Old 07-31-2006, 07:04 AM   #2
    feelbad
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    DO NOT i repeat,do not,get this radiated unless this is some brand new technique that just came out that no one else knows about,this is not in any way shape or form an actual tumor and will NOT respond to radiation in the way that tumors do.you will be subjecting yourself to very needless levels of high radiation that is totally unnesscessary.

    did anyone actually explain to you just what a cavernoma actually is?that it is basically a glob of blood vessels that just happened to form ,probably before birth.i have/had(still have part)of a cavernous hemangioma inside of my spinal cord.and at no time was radiation ever ever mentioned as far as treatment,i went thru the head of neurosurgery at the university of minnesota.

    have you done any actual research on the treatment of angiomas at all as far as treatment options?you will not find,to my knowledge,in any of the medical journals or articles that I went thru,any mention of actually radiating cavernomas,ever.i do believe this would not actually work given the fact that these are just veinous blood vessels.now with AVMs,which are the counterpart of cavernomas,and are arterially fed.i do believe I had read something about the possible use for radiation in them,but not too sure why the differences there.

    did they say that your cav actually had bled at all?this could have triggered that episode you had as they will usually not present themselves in such a dramatic way the way yours did.they will normally just kind of be there til either they have a bit of an oozy type bleed that may trigger the type of response that you had,or they go totally unnoticed except for feeling some little odd sensations or having headaches or something along those lines.but most of these are usually picked up when a person is having an MRI for some totally unrelated situation in the same area and they are just "there" on the films.this is actually how mine was discovered inside my cord,when i was having an MRI to check out which disc i had herniated.there it was just a glowin inside my c spine right below where the herniated c 6-7 was.didn't have a clue it was even there til then and I was just turning 40 that year.

    mine ended up needing to come out only becaue of repeated bleeds.if this had been insiode my brain,my neurosurgeon told me he would have probably left it alone but being inside the cord,there was just no 'give" or room for expansion and the next bleed would have closed off the remaining one third of my cordspace and paralyzed me.actually,having them in your brain,depending on whether its in the pons or not,is actually safer than having them inside the cord.just where IS your located in the brain?

    you really DO need to get all reports and all medical records that will be generated by you just having this inside your brain.the radiology reports are espescailly needed mostly so you can read thru them but alos just having your own set of all records to keep inside a little expanding folder that you can take with you to all appts and if you espescailly have to take a trip to the ER.all you need to do is grab that folder and go and you will have all of your very important medical info right there for all the docs to see.this comes in REALLY handy at different times,trust me on that.

    did they tell you to stay away from all blood thinning products like Rxed type ones and any aspirin or even things like aleeve and advil?

    you really DO need to be treated by a knowledgeable neurosurgeon and no one else.and make darn sure about the 'knowledgable" part.rather amazingly there ias alot of neurosurgeons and espescially neuologists who really do not know almost anything about how to actually treat these.i am kind of concerned that they are telling you about radiating this cav.really.like i said,unless this is some brand new thing that they just found out is somehow actually supposed to work now when it was never actually an option before now,well I would be a bit concerned about that alone as far as the actual overall knowledge your current treating doc.this is why you need to really start looking for all the info you possibly can on this and print it off and keep this in that folder.this will back up any questions you may have of a certain doc if he/she should be clueless about these and actually will argue with you(trust me,it happens way more than you would think when it comes to these)as far as the real info.

    knowledge IS power and the more you actually know about your own conditrions the better treatment you will get only because you actually KNOW what is best based on the research you have done.you know?I wish you lots of luck with your cav.just make darn sure to actually find that knowledgeable doc and thoroughly explore ALL options before consenting to anyone doing anything to your brain or the cav inside it.if you ahve any other questions,just holler.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 08-01-2006, 10:03 AM   #3
    RubyBluebird
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    Thank you for your response Marcia. Susan aka RubyBluebird
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    Diagnosed with an inoperable cavernoma July 2006. Had MRI. RubyBluebird

     
    Old 08-02-2006, 05:48 AM   #4
    feelbad
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    just why is this cav considered inoperable?exactly where is it located within the brain.do you have a copy of that MRI that tells that location?and if so,could you post that and what it states in the summary/conclusion,at the very end of the MRI report?thanks,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 08-03-2006, 04:40 PM   #5
    brainygirl
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    I have a grade II astrocytoma which is inoperable in my lower left temperal lobe. I agree with the make quintuple sure radiation is your only option. I have seizures, I can't go for a walk, bike ride, swim or even shop without a companion because of them, I can't add worth a flip any longer ( I was a payroll manager before my seizures set in) and so can't work and can't drive ever again. My only form of treatment will be whole head radiation, which is very effective on my type of tumor, however every neurosurgeon I have seen and the leading brain tumor oncologist in Kansas has told me that would be a last resort due to the extreme side effects. Only when I am too stupid to know who I am because of my tumor will they put me through that. I am told by them that the symptoms of the tumor are by far less harsh than those of the radiation. I know a gentleman who is the husband of a woman I worked with. He had whole head raditation because they couldn't locate where his tumor originated from and he can't hear in one ear, he can't taste anything and he will never produce saliva again. He says everything he eats has the dry cracker effect in his mouth. So far his cognitive testing comes out okay, except she occasionally has to repeat what she says because it doesn't sink in she is talking. (that might be the husband wife syndrome too though!!!)

    Do your research and make sure this is your only option. Hang in there though. I am blessed with a wonderful husband and mother who make my daily life liveable, and after two and a half years am able to limit my depressed days for the independence I have lost. It may seem gloomy now but please stay positive that it will get better. Are they medicating you for your seizures? I have been through many of them and their side effects are crappy as well, but they are far better than the seizures are. My prayers are with you, Brainygirl

     
    Old 08-06-2006, 09:42 PM   #6
    RubyBluebird
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    Quote <It may seem gloomy now but please stay positive that it will get better. Are they medicating you for your seizures? I have been through many of them and their side effects are crappy as well, but they are far better than the seizures are. My prayers are with you, Brainygirl>

    Thank you so much for your post Brainygirl. I have a friend whose son went through radiation at the University of Iowa for a tumor near his brain stem. First they removed the tumor and then radiated the area it was in. He is basically back to normal.

    I am not married and have worked as a Realtor for the past 14 years. The thought of losing everything I have worked for is a tremendous stress. I am taking Dilantin because they thought I had a seizure but I have not had any more so that is good. In Iowa I have to wait six months seizure free before I can drive again.

    I have a wonderful mother and wonderful friends that help me in so many ways so I too, feel very blessed. Right now a friend's brother, unemployed, has been on call to drive me everywhere.

    Aug 22 I go in for an appt at the Uof I hospitals and clinics with the head neurologist. I should know more then.

    Thanks for advice to learn as much as I can. Am doing as much research as I can stand.

    RubyBluebird aka Susan
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    Diagnosed with an inoperable cavernoma July 2006. Had MRI. RubyBluebird

     
    Old 08-06-2006, 09:45 PM   #7
    RubyBluebird
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    Re: Just diagnosed with a cavernoma or cavernous hemangioma.

    Quote:
    Originally Posted by feelbad
    just why is this cav considered inoperable?exactly where is it located within the brain.do you have a copy of that MRI that tells that location?and if so,could you post that and what it states in the summary/conclusion,at the very end of the MRI report?thanks,Marcia

    I do not have a copy of the MRI nor the report. I will ask for it. I go in on the 22nd for my first meeting with the Neurologist. Thanks for all of your information that you share with others. Susan aka RubyBluebird
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    Diagnosed with an inoperable cavernoma July 2006. Had MRI. RubyBluebird

     
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