Questions and Information About Cavernous Angioma

Progressive Worsening

Back to Questions and Information About Cavernous Angioma forum
Back to forum index

<-- Newer
Older -->

Five years ago, doctors removed a cavernous hemangioma because it was shown to have burst several times.my condition is progressively worsening to where I (F, 39) don't have any balance, have "electric shocks" in my arm and leg  (among other things such as neuropathy, double-vision, etc.) I have gone from barely needing a walker topretty much  needing a wheelchair.

Even after removal, I keep having "stroke-like events". I now feel as if I have to "convince" Neurologists that these are happening and my condition is worsening. (I've seen four different Neuros.) Because the hemangioma was near my braisteam, Neuro think i am trying to "dramatize" my condition.

I have made a lisr of symptoms for Neuro visits and made timelines, etc. but nothing is working. Other docs (Endocrinologists, Rheumatologists) have said it looks like Multiple Sclerosis. What can I do to have Neuros consider this?
The symptoms of brainstem bleeds can be similar to those of MS. In fact, before there were MRIs, many people with brainstem CAs were diagnosed as having MS.

Have you had MRIs since the surgery? In general, you should have follow-ups every year, to make sure that the CA was removed entirely, and has not grown back.

This said, it _is_ possible to have had a CA removed _and_ to have MS, but that can generally be diagnosed by MRI.
Yeah, I had an MRI done in April of this year. I've had countless MRIs before that and it has been confirmed there are no more angiomas.

I still don't understand why I am getting so dramatically worse. Any suggestions or opinios?(FYI - my only sibling has Becker's Muscular Dystrophy and my Dad has unresolved Bell's Palsey. I have already been tested for Myasthenia Gravis.)

Please help!
INAMP
   First off, don't you hate it when you record symptoms so the doctor will know what is happening (some doctors ask you to do this) and then when you bring it in, they say, "You are pretty obsessed with your illness, aren't you"  You just want to let them have it.  :;):  
 Could you just clear up a few things for me?  You said your hemangioma (we tend to call them angiomas now) was near your brainstem.  Where?   And you said your symptoms have gotten progressively worse, for how long? Like just the last year?  I will  write back.  I am just the type that needs all the information.
The angioma was at the intersection of the medulla, pons and cerebellum. My health really started going downhill right after removal in 2005. My quality of life is at its lowest.

Yeah, to write-down symptoms or not THAT is the question!  :D

Your help with this is truely appreciated!
I was reading about this: chronic cerebrospinal venous insufficiency.

I was wondering if anyone who had angiomas removed now have this?

I have tried getting a Doppler Test approved from my PCP, but she won't approve. Any suggestions to get this done?
Quote (INAMP @ Aug. 30 2010,17:39)
I was reading about this: chronic cerebrospinal venous insufficiency.

I was wondering if anyone who had angiomas removed now have this?

I have tried getting a Doppler Test approved from my PCP, but she won't approve. Any suggestions to get this done?

TRY THE GLOBAL OPTIONS PROGRAM. GOOGLE IT.
First, I apologize for not writing back yesterday.   I have days when I eyes don't focus enough to read.  Yesterday seemed to be exceptionally bad.
 Well, your angioma certainly was in the high rent district.
     The biggest problem is that there are so many things that aren't known.  We aren't doctors.  We are fellow angioma people.  When people get operated on, they tend to leave our little group.  Oh, mind you, we would love to have them continue, but if the operation has gone well, they leave and go live their life.  We haven't gotten much feedback.
    I so want to help you, but I don't know how.  Do I believe there is something wrong.  Yes.  And you are getting all the symptoms for that area.  Do I know what to tell you?  No.   I really did go through this for years, trying to find the right doctor.  It is so hard.   I really think it might be worth a shot to go through one of the big people in the field.  I am so sorry.
Libby,

Thanks for your reply and sorry to hear of the bad day yesterday.
Who would be the "big people to see in this situation? My health is decling so much, I will go anywhere! (It seems there is a big correlation to the "attacks" I am having and "the monthly cycle".)

Thanks again and I hope today is a better day for you!

Amy
Quote (INAMP @ Aug. 29 2010,14:30)
Even after removal, I keep having "stroke-like events".

If you don't mind me asking, What specifically do you mean by this?
When the weather is warm and it is 2-3 days before the ol' menstrual period, I have an "attack" where one whole side of my body goes numb and I get violently ill (throw-up, diarreah and extreme sweating). This "attack" lasts 30-45 minutes. (I told my Neuro about and he said, "Just watch it when the weather is warm.")
Just throwing a thought out there...So your menstrual cycle starts with a sudden drop in the amount of progesterone after it peaks.  High and low levels of progesterone can increase and decrease blood pressure by constricting and dilating blood vessels which I imagine could lead to some problems like bleeds-someone correct me here if I'm wrong-I've been out of the classroom scene a while!  I do know that most of the doctors I've seen have said their is a possibility the hormones (high progesterone) during pregnancy may have triggered my bleeds.  I swear my OB also said progesterone weakens the walls of blood vessels but I'll have to research that.
Oh okay, gotcha. My right side is always fairly numb and it fluctuates with my general levels of fatigue and stress. Sometimes it is totally unpredictable. You seem to be able to tie your symptoms to certain events, so I would be careful and not assume that they are related to new bleeds. If there is one thing that I have learned about these things, it is how unpredictable that they are. That said, I would definitely seek out a Dr. that I trust and whom with I am comfortable. Just my two cents.
Thanks guys, for your replies!

Interesting thought, Otownmama, I've tried to do research on the relationship of hormones (esp progesterone) to the strength of the walls of blood vessels, but I must be looking in the wrong places because I haven't found much info. If you know where to look, please let me know.

I'll keep searching for a good Neuro who wants to work with me as a team. It's a lot harder to find one than I thought!

Thanks again to everyone and I wish you the best!
Hello, I tried to look up the progesterone thing too and did not find anything.   I wouldn't jump to conclusions but it sounds like your doing your homework... Let us know.. Your in my prayers!
Inamp
Where are you located? Maybe we can help find a good neuro for you?
I'm in Louisville, KY, but will travel anywhere. Heck,  after my first bleed, I flew to Johns Hopkins in Maryland.

Thanks for your concern! I appreciate it!

Go to the Angioma Alliance Community Hub

Go to the Angioma Alliance Forum

Go to the Angioma Alliance website