Can someone help me please?

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Can someone help me please?

Postby beachgirl » Sun Mar 16, 2008 8:21 pm

I am a 30 year old recently diagnosed with Chiari Malformation, after years of migraines. The medications that my doc put me on were not helping and in the past two months I have noticed some other changes as well. I have been starting to forget things (names, dates), things that I should know right away. The last time that I had a migraine I went to the doctors office and he gave me shots which normally helps me right away. Well this time they didnt help at all. I went back to see him a month later and he scheduled an MRI which showed that I had a CM. I am scheduled to see a neurologist in about two weeks. I am so frustrated thought, with the memory loss, and in the past couple of weeks I have been really nauseous and am sometimes vomiting after I eat. I am at the end of my rope here, and would like some advice on what I can do until I see the neuro doctor to discuss my options
beachgirl
 
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Waiting for NL

Postby MorningBroken » Sun Mar 16, 2008 9:11 pm

Before I was diagnosed with CM, and I had a referral from my PCP to the NL, memory issues plauged me as well. My doc suggested keeping a list on my calender (hubby keeps me in those large desk calenders, so there's plenty of space to write) any symptom I noticed when I noticed it. The night before my appointment, I used the calender to write down all the different aches, pains and even the minor irritations and annoyances that I had had over the two and a half week period.

When I got to the NL, I had 3 pages of symptoms. There's NO way I would have been able to remember everything, and that listing I believe helped him to help me.

So while your waiting, dont worry about your symptoms.... physically "capture" them on paper, so they dont take a ride on a memory flight and you brain fog them out at the very moment you need to remember them the most.

Hope your appointment goes well, and that your NL turns out to be WONDERFUL.

God Bless you and Yours!!!!

Dawn
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Postby beachgirl » Sun Mar 16, 2008 9:33 pm

thanks for the encouraging words....i do actually have a big desk calendar here at home and will from now on jot things down....i have a feeling that it will be a couple of pages like you said. thanks for the info
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Postby Beverley » Sun Mar 16, 2008 10:02 pm

Beachgirl,

All of these things are related to the Chiari. The migraines, memory issues, nausea, vomiting. I have to say that after I found out I had Chiari even before I read all the many possible symptoms. I started feeling worse than ever before. It was like they mentioned a condition and I started to detoriate like ice melting.

Try not to stress too much it will only make you feel worse. I really did not find anything that helped with the symptoms too much. I had my decompression surgery back on the 8th of February and I really am feeling much better now. So know that there is help out there for this.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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Postby Robertsgirl » Mon Mar 17, 2008 1:21 pm

Beachgirl,

I too suffered from awful migraines, and received injections for the pain. I will say that since I had the decompression surgery. I no longer suffer with the daily headaches. Unfortunately, I still have the migraines. They do not last as long, and I am no longer sick to my stomach.
I hope that you begin feeling better.
Robertsgirl
 
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Postby mrsariel » Mon Mar 17, 2008 4:21 pm

Hi
Yes I know the daily headache problem all to well!
I just wanted to add to the keeping of your symptoms chart, you might want to keep track of everytime you take a medication too. Sometimes through that the doctor's can see patterns. I have been keeping a diary since 1999 of every pill I have taken or what is going on. I also seem to note that weather changes wreck havic on my symptoms.
You might also keep track on another paper of when you took the medication for what peroid of time and the doseage. I know it sounds like alot but it definitely helps when you go to the doctor.

I have a little less that 2 months till I have my TCS surgery. I am praying that it will help the headaches and I won't need a decompression in the future.
Right now until that point, they just don't know what else to give me for the pain. We are trying Flexeril 3 times a day but its making me feel sluggish.
Good luck
Lisa
CM 7mm diagnosed 12/06.
Tethered Cord diagnosed 10/07 @ TCI
TC surgery 5/13/08
http://www.caringbridge.org/visit/lisas
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Postby dtyree » Mon Mar 17, 2008 4:44 pm

Dear beachgirl, here' a howdy doo coming at ya!!

This Chiari thing really stinks until we get the relief we so deserve, the place of comfort we have waited for. The retching thing was probably the worst for me. Every morning like clock work, took hours to get over. I believe the surgery allieviated that and am doing much better. This could be one great thing to look forward to.

I don't think there is any way to avoid it, but can suggest small meals. Probably 5-6 small ones over the day. You get some nutrition and hopefully it will stay down. Also, would suggest very bland foods. I know eggs are bad, but soft, bland. A few crackers with salt to help retain liquids. Mild soups, mixed cooked veggies, nothing greasy at all, toast-no butter, don't dare go into a fast food place, nothing acidic like orange juice, just anything soft, bland, in small quatities, and it just might stay down. Hope that will help you.

The headaches are a pill too. A dark room with a cool clothe over your face and quiet. Might help also if you can do it. I never found a med to help even though I was popping 40-50 ibuprofen a day. Lucky I still have a stomach left.

The forgetfullness, kinda goes with the territory. I have found keeping a pen and pad close at hand at all times helps some. Still, things fall through the cracks and I say probably was not that important after all. And one more thing, put yourself first in everything. Everything else at this point does not matter, your health does.

I pray that God will help you now. That He gives you strength for the day to day activities, a peace in accepting the illness before you, and a warmth to comfort you when you really do not know what to do.

Peace,
David
Been called a "walking medical dictionary".
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