Mystery Diagnosis

Hi…does anyone feel like their AVM case should be on a show such as “Mystery Diagnosis”? It took a lot of doctor visits to have my AVM discovered (33 years worth). There is a lot that doctors don’t know about AVMs. I feel they need to hear more about it! Anyone feel the same?

ABSOLUTELY!!
I went 28 year without a diagnosis and 10 years just being told I had migraines and hypochondria!!
My Dr. and my family all said it was in my head and that I was making it up or playing it to be worse than it was.
I really started to believe I was crazy!! The migraine cycle was horrendous. I would have a 3 day headache and then be so wiped out for another 3 days that everone just said I was depressed all of the time. I may have been somewhat depressed but who wouldn’t after living like this for years. The worst of it started when I was 18 and just getting out on my own.
They all had to eat their words 10 years later 4 aneruisms in my large AVM ruptured and I almost died!!
My doctor who had treated the migraines for over 10 years and had done a cat scan and found nothing but did not use the dye. That Dr. never treated any of my symptoms as minor or in my head again and even began to over protect me in the next several years.
I think even now, the Dr’s do not know alot!! They all say that the symptoms and after effects that we have cannot be related to the AVM!! I HAVE A SERIOUS PROBLEM WITH THIS!! HOW CAN SO MANY OF US ON THIS SITE HAVE THE SAME EXACT SYMPTOMS BEFORE AND AFTER SURGERY AND THEY NOT BE RELATED TO THE AMV!!! The only Dr. that never told me that was the same Dr that felt bad for letting me suffer for over 10 years diagnosing me as a hypochrondriac and giving me minimum dose medication to treat my migraines and telling me I just needed to lose a little weight and be more active). I never gained any weight until I started having the migraines and feeling like crap and then I did become less active and gained a little weight but him telling me those things only depressed me further.

I think you are on the right track with your idea!!

You should let him know that the reason you gained weight was because your blood was not traveling at the rate it should have been and that slowed down your metabolism!!! Neurologist in town said that he has only seen 3 people with this and they died. He told me to just hang on and live life as long as I still have it…in other words…DEAL WITH IT!

Susan T. said:

ABSOLUTELY!!
I went 28 year without a diagnosis and 10 years just being told I had migraines and hypochondria!!
My Dr. and my family all said it was in my head and that I was making it up or playing it to be worse than it was.
I really started to believe I was crazy!! The migraine cycle was horrendous. I would have a 3 day headache and then be so wiped out for another 3 days that everone just said I was depressed all of the time. I may have been somewhat depressed but who wouldn’t after living like this for years. The worst of it started when I was 18 and just getting out on my own.
They all had to eat their words 10 years later 4 aneruisms in my large AVM ruptured and I almost died!!
My doctor who had treated the migraines for over 10 years and had done a cat scan and found nothing but did not use the dye. That Dr. never treated any of my symptoms as minor or in my head again and even began to over protect me in the next several years.
I think even now, the Dr’s do not know alot!! They all say that the symptoms and after effects that we have cannot be related to the AVM!! I HAVE A SERIOUS PROBLEM WITH THIS!! HOW CAN SO MANY OF US ON THIS SITE HAVE THE SAME EXACT SYMPTOMS BEFORE AND AFTER SURGERY AND THEY NOT BE RELATED TO THE AMV!!! The only Dr. that never told me that was the same Dr that felt bad for letting me suffer for over 10 years diagnosing me as a hypochrondriac and giving me minimum dose medication to treat my migraines and telling me I just needed to lose a little weight and be more active). I never gained any weight until I started having the migraines and feeling like crap and then I did become less active and gained a little weight but him telling me those things only depressed me further.

I think you are on the right track with your idea!!

Grace,

Now I do live my life to enjoy it while I have it. I now have a son that will be 5 in September and I am afraid I will not be around long enough to see him grow up. I am an older Mom as it is, I turned 35 just days before he was born and will be 40 here shortly, so I know I am going to be older when he gets out of High School, I just hope that I live to see it and maybe longer to see a grandchild someday. I would love this but the way I feel most of the time, I do not hold out hope. I live each day for today and try to enjoy my son and give him great memories while I can.
I do not want to sound morbid or that I have given up hope but I also decided when last year they told me my AVM was growing again that I would not have anything done with it unless it became life threatening. I walked away the first time fairly normal to what I was before but know that I will not be so lucky a second time. (I am peismistic in that respect).
The Dr’s told me that doing the radiosurgery a second time is risky because the brain damage can be more severe with repeated doses of radiation. (Iam scared that is where I would lose my mental function this time).

Grace O’Brien said:

You should let him know that the reason you gained weight was because your blood was not traveling at the rate it should have been and that slowed down your metabolism!!! Neurologist in town said that he has only seen 3 people with this and they died. He told me to just hang on and live life as long as I still have it…in other words…DEAL WITH IT!

Susan T. said:
ABSOLUTELY!!
I went 28 year without a diagnosis and 10 years just being told I had migraines and hypochondria!!
My Dr. and my family all said it was in my head and that I was making it up or playing it to be worse than it was.
I really started to believe I was crazy!! The migraine cycle was horrendous. I would have a 3 day headache and then be so wiped out for another 3 days that everone just said I was depressed all of the time. I may have been somewhat depressed but who wouldn’t after living like this for years. The worst of it started when I was 18 and just getting out on my own.
They all had to eat their words 10 years later 4 aneruisms in my large AVM ruptured and I almost died!!
My doctor who had treated the migraines for over 10 years and had done a cat scan and found nothing but did not use the dye. That Dr. never treated any of my symptoms as minor or in my head again and even began to over protect me in the next several years.
I think even now, the Dr’s do not know alot!! They all say that the symptoms and after effects that we have cannot be related to the AVM!! I HAVE A SERIOUS PROBLEM WITH THIS!! HOW CAN SO MANY OF US ON THIS SITE HAVE THE SAME EXACT SYMPTOMS BEFORE AND AFTER SURGERY AND THEY NOT BE RELATED TO THE AMV!!! The only Dr. that never told me that was the same Dr that felt bad for letting me suffer for over 10 years diagnosing me as a hypochrondriac and giving me minimum dose medication to treat my migraines and telling me I just needed to lose a little weight and be more active). I never gained any weight until I started having the migraines and feeling like crap and then I did become less active and gained a little weight but him telling me those things only depressed me further.

I think you are on the right track with your idea!!

I totally agree. I started having migraines at age 12 and was told numerous times is was “normal.” No one else in my family ever suffered from migraines like I did. They were bad and once I had a migraine the day and even the week was over because of the pain and vision issues.

Not until 3 years ago did someone finally find my AVM. I never even heard of an AVM. I will NEVER forget the day. I am AVM free now and pray for all of you out there today going through what I very recently went through. God bless!

I agree, about a month before my AVM was discovered I went to the local clinic with pulsing in the ear, facial numbness and a hell of a headache. I was told the numbness was a pinched nerve and the pulsing may be hypertension or a thyroid people ECT ECT. Blood work was done my heart was cheacked which all came back negative because something wrong with my brain was not even an issue. If i had never had the seizure i doubt it would have ever been found. Even with finding it and talking to my neurologist I am made to feel like a hypochondriac or crazy when I ask if certain symptoms are related. There really needs to be more research done and more awareness done so doctors and people know the symptoms and this problem before it’s too late.

You may know this but there was a boy that was on mystery diagnosis that had and avm in his lung which was related to HHT.

for sure,
i was diagnoised with sinus problems at the age of 18 after suffering 3 years of miagraines…i even had and operation on my sinuses…with no cure of the miagraines…it wasnt until i lost my left field vision at the age of 27 did the doctors finally discover the real cause of those miagraines for the last 10 years

It think the commonality I’m seeing is the headaches. I had them for years as well, but it was never taken seriously. Maybe my AVM would have been found before I had the stroke. It could have been removed and relatively safely and I would be much better off than I am now since I had the bleed. Unfortunately I think it’s partially a money issue. Doctors are reluctant to go ahead and order an MRI or a CT because the insurance companies may not want to pay for it. My sister in law has suffered from migraines for years and not one doctor has ever ordered on of these tests. I’ve told her to see a neurologist and insist that these be done. Yes, perhaps raising awareness is the only thing we can do.

I think that even with all the studies that doctors today do, the way each of them feel an AVM can be curable is also sometimes different. Although I was asked to make the decision of whether to have radiation, cranial surgery or endovascular surgery (embo), my doctors were very happy with the choice I made. Endovascular surgery alone saved my life. I can’t guarantee that somewhere down the line I won’t be on the same boat again, but I am far away from that at this point.

I just wish all of you, as well as your loved ones, regardless the the choices made, are cured, and can live happy lives knowing that you are now understood!

Hi Grace,

I had AVM symptoms for over 20 years, and like others who have posted their comments, I had doctors tell me that my symptoms were psychological. To be fair, since my AVM was in my neck as opposed to in my brain, it was harder to diagnose.

Now that I know about AVMs, it’s scary that there were two needle biopsies done on the AVM, and there was blood both times, which might indicate that they made the AVM bleed. After the second needle biosy, I may have had a small seizure. There were a few minutes the next day when I lost control of my arms for a few minutes. It subsided, and I didn’t think much about it until I learned about the danger bleeding AVMs pose.

I don’t know if it is the fact that the two orthopedic doctors I’ve seem concerning the loss of movement with my left arm are osteopathic doctors or that they are located in large metropolitan area (Indianapolis), but they seem to know a lot more about AVMs than other doctors I’ve run into. They asked me a lot of questions I couldn’t answer.

On a related note, I used the Symptom Checker on WebMD more than once, and I never came up with AVM as a possible diagnosis for the symptoms I experienced.

Thanks for starting this discussion. It allowed me to get a lot off my chest.

Debbie

For anyone who might be interested, and of course, for me to be able to finally get it out…attached is the written story of my life with an AVM. (five hours worth of reading time necessary)… hahaha I felt the need to have it in writing in the event of anyone needing to know about it when I’m not here to tell it. And that will only be because I lived to be 100 and can’t remember it anymore…haha…but just in case. :wink:
471-AVM_revisedlastversion.doc (40.5 KB)

Absolutely! Jaclyn was just saying that the other day!

It’s always nice to hear that it’s just not me who thinks they’re crazy!..lol… Although I hate to think of anyone EVER having to go through this…I am glad that there are people I can talk to about it. Thank you.

Kim (Jaclyn’s mom) said:

Absolutely! Jaclyn was just saying that the other day!

Grace,

I just finished reading your story and I am crying so hard I can barley see the keyboard.

You have described some of what I went through but never wanted to voice for fear of
being labeled crazy!!
You are truly an inspiration and I am soo glad you are 98% well.
Even though mine is growing again, you have given me inspiration and I know everything will be
alright.
One of my Dr’s did say they thought alot of what I have experienced has had to do with the AVM and
the brain injury from having so much blood on my brain (4 anuerisms at once). I think I will believe her now and maybe discuss your case with her. I may even print off your story and take it with me.

Thank you

Thank you Susan…please let me know how your doctor’s appt goes. I’m absolutely sure all will go well especially if you believe in it! The “right” doctor’s today know what they’re doing…it’s just a matter of finding them! Good luck!

Susan T. said:

Grace,

I just finished reading your story and I am crying so hard I can barley see the keyboard.

You have described some of what I went through but never wanted to voice for fear of
being labeled crazy!!
You are truly an inspiration and I am soo glad you are 98% well.
Even though mine is growing again, you have given me inspiration and I know everything will be
alright.
One of my Dr’s did say they thought alot of what I have experienced has had to do with the AVM and
the brain injury from having so much blood on my brain (4 anuerisms at once). I think I will believe her now and maybe discuss your case with her. I may even print off your story and take it with me.


Thank you