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(Message started by: hurtinunit on Jul 8th, 2005, 3:37pm)
Title: scared shitless please read!
Post by hurtinunit on Jul 8th, 2005, 3:37pm
All this time iv'e been walking around thinking ok i have cluster headaches they hurt like a m*th*rf**k*r but at least ther not dangerous. Well 4 days ago the second neuro im on (first one said my MRI was normal) calls me at 10 oclock at night and tells me i have vascular malformations in my brain that he had showed my mri to a colleague and he saw these things, so im freakin out what the hell does that mean he says my blood vessels are twice the size they should be, but dont worry ab out it till i come back and see him, so i look all this up on the internet and it says vascular malformations are present at birth don't present themselves until the 20s and 30s MIMICK THE SYMPTOMS OF CLUSTER HEADACHES AND MIGRAINES EXACTLY and pose a significant risk of brain hemorraghing, stroke, death, and require surgery. IM literally planning my funeral waiting for my apponiment with the vascular neuroloigist
has anyone else been told they have this on their mri's
im not trying to scare anyone else but im scared shitless
Title: Re: scared shitless please read!
Post by kimmeesue on Jul 8th, 2005, 3:51pm
check out www.obsvm.org.  Might provide some help while you wait.

You're in my prayers.

Kim
Title: Re: scared shitless please read!
Post by LeLimey on Jul 8th, 2005, 3:59pm
were you getting hit when you had your mri by any chance?
Title: Re: scared shitless please read!
Post by marlinsfan on Jul 8th, 2005, 4:18pm
When I was diagnosed incorrectly with migraines, I was told my "virchow robin" or something like that in my brain was inflamed. Don't know if it's the same or not, but the neuro was not alarmed.

Hang in there. Don't jump to conclusions until you see the doc again.

PF wishes
Jose
Title: Re: scared shitless please read!
Post by Linda_Howell on Jul 8th, 2005, 4:46pm


Quote:
--------------------------------------------------------------------------------
were you getting hit when you had your mri by any chance?


LeLimey has a point here,  and please.. know that no one here is a Physician but after 100's of years of Cluster Headache experience combined....we really have a good grasp on these MF-er's

WERE you having an attack at the time?
Our vascular system  IS  dialated when we're under attack.  Hence...vasoconstrictors!!!!!!!!!!!!!(our drug of choice  ::))

You may not have anything to worry about but we are here if you need to talk hon.     Linda
Title: Re: scared shitless please read!
Post by Topical on Jul 8th, 2005, 9:01pm
I am so sorry to hear this hurtinunit.

A doctor told me I had the early signs of Parkinson's Disease, I went to several neuro's and they wanted to know the name of the doc as he didn't know what he was talking about.

Get a second and third opinion and ask for when you can get additional testing including another MRI.

Stay strong.
Title: Re: scared shitless please read!
Post by BMoneeTheMoneeMan on Jul 9th, 2005, 12:37am
Stay strong, try to relax.  Dont think the worst.
PF wishes
BMonee
Title: Re: scared shitless please read!
Post by paul_pero on Jul 9th, 2005, 8:26am
Don't worry yourself. I know its easy for all of us to say. Keep your chin up. I had doctors and quacks tell me I had all sorts of things over the last 14 years.

Hope everything is fine.

PF  dude
Title: Re: scared shitless please read!
Post by millie the episodic on Jul 9th, 2005, 9:32am
The important question here is, "Were you having a headache at the time, or were you in a cycle?" All as a clusterhead you should know that you can rarely go on the first doctor or test for that matter. Before you dig your own grave, please get at least a second opinion.
Stay stong, Millie
Title: Re: scared shitless please read!
Post by Bob_Johnson on Jul 9th, 2005, 9:46am
Running with your fear will do you more hurt, in the short run, than the malformations.

You are doing the correct things: seeing a good doc; following his guidance re. treatment. What you can do is to give yourself the time needed to work through a good workup--without asking an endless run of "what if...." questions!

Neither you nor your doc can predict the future. You can only take the series of steps he will spell out and get the problem repaired.

"Why?, What if?" can only induce fear and pain....
Title: Re: scared shitless please read!
Post by Leggs on Jul 9th, 2005, 8:25pm
Just vent and know we are here for you, but like Bob said, don't think the worst. If you were on the verge of having a stroke or something, don't you think they would have hospitalized you...if for nothing else, to cover their butts for malpractice!

You know, sometimes the internet can be a bad thing, when we have all this info to look up; it really scared me when I looked up face pain in the middle of the night, and read about trigeminal neuralgia, and the neuro told me that was what I had BUT, since THAT diagnosis, so many things point in other directions.  Just see what happens at this next doc, and as my country counsins used to say, "Worrying is like rockin in a rockin chair; it gives you something to do, but you don't get anywhere"  Hang tight, and all this worrying will be a memory soon...T.Ann
Title: Re: scared shitless please read!
Post by hurtinunit on Jul 14th, 2005, 5:08pm
hi all.thanks for the responses, to answer everyones question yes i was getting hit big time while i was having the mri i know your vessels are dilated during a hit, so i hope thats all it is i will find out next wednesday i have been so out of it on top of the clusters and this vessel thing i had an accident a week and a half ago the shower curtain rod fell down and wacked me in the head while i was washing the tub at a clients house I do home health parttime went to the er no concussion but now im on medical leave for two weeks cuz in addition to the clusters im having"regular" headaches and tingling sensations in my head this is all new, not part of the clusters when it rains it pours kim
Title: Re: scared shitless please read!
Post by Topical on Jul 14th, 2005, 9:16pm
"when it rains it pours"

That is so true. Try to stay positive and keep us posted. I hope it goes well next week.
Title: Re: scared shitless please read!
Post by duerrs on Jul 17th, 2005, 5:45am
When i had my MRI, i was in cycle but i did not have a ch.  My neuro told me that he wished his MRI looked as good as mine did.  I asked him at that point if he wanted to trade.....of course, his answer was no...lol.

I would not worry, your pain is caused by a great unknown just like all of us.  
Title: Re: scared shitless please read!
Post by Leggs on Jul 17th, 2005, 11:11pm
Yep, Kim, know about the rains it pours idea myself.  But think of this, you will reach the height of your insanity with the pain, and then it will all be downhill from there...

I was just getting a grip on the predictability of my clusters, when I got in a car wreck and all this other crazy mess is happening now.  I must say, the cresendo of the downpour was when I had one of the top three CH I have ever had in my LIFE, all in the middle of appointments being cancelled, weekend with no doctor to contact, blah blah blah.  Even though I am still working things out, going to appointments, getting referrals, etc., I feel like I am heading somewhere, like they are starting to get it, figure out what is going on....

Keep us posted about every thing, and be careful around shower curtains!!!!  OUch.
Title: Re: scared shitless please read!
Post by hurtinunit on Jul 25th, 2005, 4:48pm
well my pain has finally stopped long enough for me to reply i went to the vascular neurology specialist last wednesday and my mri was normal the other guy made a frigan mistake there are no vascular malformations which is a damn good thing cuz this specialist said i scared the hell out of him if i had them they are deadly never thought id be so happy as to report im "just" a clusterhead :)
Title: Re: scared shitless please read!
Post by marlinsfan on Jul 25th, 2005, 5:15pm
As weird as this may sound, I'm happy you're a clusterhead :P! Great news it's nothing more than that!
Title: Re: scared shitless please read!
Post by Topical on Jul 25th, 2005, 8:45pm
Excellent news! Grats on the new MRI!
Title: Re: scared shitless please read!
Post by LeLimey on Jul 26th, 2005, 5:30am
I'm really glad its "just CH" too! That wombat that told you about the "vascular malformations" needs a taste of our Jonny's boot.. give him a few malformations of his own!
What meds have they put you on and how are you getting on?
Title: Re: scared shitless please read!
Post by hdido on Jul 26th, 2005, 1:05pm
Congratulations on the result of the latest MRI.  I really don't understand the hostility that some people seem to have against virtually every doctor.  I think that the doc that thought that you had vascular problems would not have been doing his job if he didn't tell you and call for another MRI.  An MRI is not the easiest thing to read; I recently had one during an attack and the doc also thought that something wasn't right with my blood vessels, so he consulted with another neurologist, another MRI was done and my blood vessels were normal.  Although there are docs out there who, to quote Randy Newman "don't know their ass from a hole in the ground", most do know their medicine and will check out with another doc what seems to be a problem.  I think that going to a doc a hostile attitude will wind up hurting the patient in the long run.  I don't doubt that having an MRI while having an attack may cause the blood vessels to appear abnormal and the doc has to check that out...doesn't mean he's a "wombat" or needs "Jonny's boot"-what if he just assumed that the enlarged vessels were due to the CH attack and it was something else-some here have suggested that that is what he should have done-then would he have been a "wombat" also?  Each person's medical situation is different and despite our collective knowledge of CH we are not neurologists or physicians and maybe should think twice before giving out medical advice to people-give them our experiences, but let's not get into the diagnosing and treatment business.
Title: Re: scared shitless please read!
Post by LeLimey on Jul 26th, 2005, 3:59pm

on 07/26/05 at 13:05:04, hdido wrote:
Congratulations on the result of the latest MRI.  I really don't understand the hostility that some people seem to have against virtually every doctor.  I think that the doc that thought that you had vascular problems would not have been doing his job if he didn't tell you and call for another MRI.  An MRI is not the easiest thing to read; I recently had one during an attack and the doc also thought that something wasn't right with my blood vessels, so he consulted with another neurologist, another MRI was done and my blood vessels were normal.  Although there are docs out there who, to quote Randy Newman "don't know their ass from a hole in the ground", most do know their medicine and will check out with another doc what seems to be a problem.  I think that going to a doc a hostile attitude will wind up hurting the patient in the long run.  I don't doubt that having an MRI while having an attack may cause the blood vessels to appear abnormal and the doc has to check that out...doesn't mean he's a "wombat" or needs "Jonny's boot"-what if he just assumed that the enlarged vessels were due to the CH attack and it was something else-some here have suggested that that is what he should have done-then would he have been a "wombat" also?  Each person's medical situation is different and despite our collective knowledge of CH we are not neurologists or physicians and maybe should think twice before giving out medical advice to people-give them our experiences, but let's not get into the diagnosing and treatment business.


Oh John, PCMCCK.. whatever! Lets not be a hypocrite now. I've seen more than enough posts from you slagging off doctors. Where do you see posts with hostility to "virtually every doctor"? And for the record if a doctor doesn't know what he is seeing he should keep his trap shut rather than scare people needlessly or did you miss the rest of the thread and the fear expressed in it? This poor guy had a week of living in fear before he got the all clear.
Title: Re: scared shitless please read!
Post by seasonalboomer on Jul 26th, 2005, 4:10pm

on 07/26/05 at 13:05:04, hdido wrote:
 Each person's medical situation is different and despite our collective knowledge of CH we are not neurologists or physicians and maybe should think twice before giving out medical advice to people-give them our experiences, but let's not get into the diagnosing and treatment business.


Should we just do away with any boards relating to Cluster Headache, like the "Cluster Headache Specific", or the "Medications, Treatments, and Therapies" boards altogether then? Don't be a putz!

You know people are pretty darn careful here and looking out for, empathisizing with and supporting in any way possible. Every person that comes here knows that this is an internet forum designed for fellow sufferers. Your arrogance to think that participants should refrain from giving out medical advice or helping others with their treatments and diagnosis.  Maybe you can hold everyone's hand for them when they cross the street too.

Modified on July 26 at 4:15 pm to remove reference to second namecalling of "putz"
Title: Re: scared shitless please read!
Post by Topical on Jul 26th, 2005, 4:22pm
I would have to agree with the two posters above Hdido. Re-read the first post and compare it to your own experience. Telling the patient something isn't right or the blood vessels look larger than normal is great. I want to know what the doc thinks.

Making a possible diagnosis is something I don't want to know until after the second MRI is performed. The doc should have kept his mouth shut on that one. It erodes patient confidence (after the doc flip-flops) and it causes unnecessary emotional stress.
Title: Re: scared shitless please read!
Post by alienspacebabe on Jul 26th, 2005, 6:33pm
Without this board I never would have tried verapamil or lithium or oxygen or imitrex injections.

Without this board I never would have demanded an immediate appointment with a neuro rather than waiting the standard 4 to 6 months.

Without this board I'm not sure where I'd be.

Everything I read here on medications and treatments and such is considered, by me, to be suggestions of things to ask about.

jmho,
Lizzie
Title: Re: scared shitless please read!
Post by hdido on Jul 27th, 2005, 12:54am
Oy vay!
Title: Re: scared shitless please read!
Post by hurtinunit on Aug 4th, 2005, 2:03pm
not to mention this doc did not refer me to go to a specialsist i referred myself i wanted to make sure myself by the way the accurate term i should have used was av malformations means arterio-venous or something but anyway i love this board and as far as giving out medical info i see this board as a form of support i dont think were doctor bashing and i think everyone on this board has enough intelligence to check out everything they read for themselves and not accept things at face value--by the way everyone my cycle has finally enede after almost 4 months hooray
Title: Re: scared shitless please read!
Post by Sandy_C on Aug 4th, 2005, 2:54pm

on 08/04/05 at 14:03:11, hurtinunit wrote:
-by the way everyone my cycle has finally enede after almost 4 months hooray


HOORAY!  Shout it out - congratulations!
[smiley=me&mb.gif] [smiley=sayyes.gif] [smiley=thumb.gif]


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