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New here & still in shock!

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Old 06-12-2009, 08:54 AM   #1
Join Date: Jun 2009
Location: Windsor, CT
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ShellyXO1124 HB User
New here & still in shock!

hey all, like the title says Im new here, Im 25 yrs old and after having "gastritis" for about 2 yrs my right hand started to shake, I became very off balance and I had somme issues with my dr but finally on March 9th of this yr I went to the ER I really thought it was nothing but after geting a CT scan they thought I had a tumor but it turned out to be a birth defect, I had a Cavernis Angeoma (sry for the spelling) also called a Ruptured AVM I was in surgery 2 days later and its been a rockyyy road since. I still shake, Im left alone very little because I dont walk well now, I see double as well its just been so hard on me while I am recovering its a slow process. I didnt have time to process this and Im just in it. My husband and daughters have been wonderful through all this and I feel so bad for them. Now Im just going on but Id love to meet some people who have been in my place

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Old 06-13-2009, 05:37 PM   #2
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Re: New here & still in shock!

Hi Shelly....I'm Jenny and I live about 10 miles west of you as the crow flies(you know the roads aren't straight in Connecticut!). I had 2 major cervical spine surgeries 2 1/2 years ago and ended up with partial paralysis and some brain damage from stopping breathing several times. It took me 2 full years to get back as much as I could and then as soon as I got a high five from my neurosurgeon for my recovery, started having strokes. It's like starting over again but not as badly but I've only started the strokes. Apparently this isn't good.

So I don't have what you had but I know the frustration of dealing with brain and nerve damage. I started seeing a therapist to help deal with it all as I kept getting very emotional. How about you? And I'm back in physical therapy get again(they must be getting sick of me!) Do you do PT? It really helps.

I'm a lot older than you(more than twice your age) but my kids are grown and my husband is out of town or state usually 3-4 days a week so I get left alone a lot. Trust me, it's better to be watched. I had one of my strokes while out looking for the cat only evening and found myself lying in the middle of the road, my flashlight off and out of reach and no street lights. I swear I can fall over a draft of air! Bad balance and I never know when these strokes will hit. They are not normal strokes but hit the base of the brain so instead of a whole side going numb, it may be just certain muscle groups on one side. But I still end up on the ground! Frustrating!!!!!!!!!!!

Anytime you need a friend or a drive somewhere or just someone to vent to, I'm just over the mountain to the west.

gentle hugs................Jenny

Old 06-14-2009, 09:01 AM   #3
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Re: New here & still in shock!

hi shelly,one thing you need to know,and i just happened to see the actual location of your angioma in the other post? this was actually in your cerebellum,this area is what also governs gait and vision among other things,so what you are dealing with and given the surgival area would more than likely be related to some degree. whether things 'right" themselves or not will take some time just to see how this all plays out. but there IS a very definite connection with where this was and what your,or some of your symptoms are right now.

one other thing i needed to find out only becasue i too had, still have part of, a cavernous angioma that was my 'birthmark" too only this little sucker actually formed in the middle of my spinal cord. i am just a bit confused as to what you actually had there? a cavernous angioma and an AVM are actually two totally different things. the cavernous is fed by veins, and is made up of only veins in kind of a glob formation, while the AVM is mostly or totally fed by arteries(except with an actual fistula type formation? just what did it state word for word in your brain MRI as far as actually describing the finding? did this actually light up with an angiogram that i am assuming was done at some point just to help define what it was made up of? like i said, just confused, not unusual for me, lol. while cavernous angiomas can bleed, they tend to actually ooze blood while an AVM would bleed more profoundly, much like a ruptured brain aneurysm would. had one of those little buggers too in 05. its been fun. marcia
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.

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