Wednesday, November 19, 2008

New Hope...

Looks like I'm still getting hits so I had better update. The MRI's on my kids came back normal, which doesn't surprise me because mine always did as well. The important part was getting the films for myself. I looked at them and my youngest looks like she has plenty of room but my oldest looks crowded so I will be watching her. Quite frankly I am adept at measuring for myself but the MRI is of such poor quality it is hard to identify the two bones I need as reference points to draw the line and see what's hanging below.

I still have headaches they come in waves. I just got over a two week headache and am feeling pretty good for the past 5 days. My biggest complaints are headache and fatigue (along with the rapid heart rate problem that comes and goes). If I could get rid of these issues I would be right as rain. Anyway, I was sent to a spine doc at CC to see if Tarlov cyst was the prob. Nope. So I researched on my own (this is how I solve all of my own medical problems) and I came across Dysautonomia. I think I found my needle. I read that POTS is heavily associated with Chiari. So, I learned how to tell if you have the condition and I tested myself. It fits!! There is no cure but they can help with the symptoms by slowing your heart rate and stabilizing your blood pressure. The current theory is that dysautonomia is caused by brain stem compression. HELLOOOO!! I am getting a Tilt Table Test Dec. 2. I am a little concerned that I will be going through a good span and nothing will happen. Isn't that awful?!? I just want it to fully represent what I go through more days than not. I did wear an event monitor for a week. It was supposed to be for a month but I am very allergic to sticky tape, even their hypoallergenic ones. Will let y'all know what I find out.

Good Health and Happy Holidays to All!

5 comments:

nicalles said...

I was forwarded to you blog from a member of the WACMA website. I read all of your blogging and was curious as to how quickly Dr. Di decided that you needed the surgery. I am 16mm herniated, I have no syrinx, but I have alot of symptoms that are similar to yours, particularly essential hand tremors and tachycardia, it occurs sometimes for no reason, other times when I am having to talk about my self or nervous in a group of people. Was told the majority of my illness that I was depressed. I see Dr. Di tomorrow and I am concerned on how quickly he decided that you would benefit from the surgery. I have had 4 doctors tell me that my symptoms are not strictly Chiari based.

Lori said...

So sorry I am now only getting this. By now you have seen Dr. Di. I hope all went well and he is offering relief. I think it makes a huge difference which nurse you got. One seems to know what they are doing and the other, not so much. He agreed I needed surgery in the first visit. I had already been told I needed to have the surgery by another doc. I was seeking a second opinion by the guy I wanted to do the surgery. I hope you see this and you let me know how it went. God Bless!

Terry said...

Do you still recommend Dr. Di? My daughter has conflicting opinions on surgery. Please help us decide whether to go to Dr. Di
bharvel

Lori said...

I absolutely recommend Dr. Di! He is fantastic at the Endoscopic Decompression. I won't lie to you, my hospital stay was horrible. Luckily it was only 24 hours!! My husband slept next to me all night which made it bearable. If it were one of my girls, there is NO way I would let some doctor hatchet open their their head. I worded it that way on purpose. It sounds barbaric because it is!! In the year 2010, there is no reason to disfigure someone like that. Plus, there is no reason to open the dura unless absolutely necessary. Leave your body as intact as possible. Dr. Di ensures the flow is adequate. He has a wonderful bedside manner and he is so funny! Can you tell I am smitten with the man who gave me my life back; the man who performed brain surgery and left little to no evidence of it :) I am not disfigured and I am back to being a normal (or at least much closer than I was) 35 year old woman. What is the harm in just seeing him? You will be so glad you did!

nicalles said...

Yes! I highly recommend Dr. Di at the Cleveland Clinic, he helped me get back on track with my life. I take things much easier than I have had to in the past only because I 1) don't want any set backs, and 2) because my husband doesn't want to relive those terrible year I had after the auto accident, and the year leading up to the surgery. My family has noticed such a change in me that they just can't believe it. Dr. Di is such a skilled surgeon and awonderful doctor, that is of course a personal opinion. But, he has never given me any reason to underestimate his ability or his care. I hope that if you make the decision for surgery that you view the endoscopic decompression surgery as an option to the less traditional surgery. It has made a huge difference in my life.

 
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