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MVD-post surgery daily diary

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Old 05-30-2010, 09:14 AM   #21
jjlsongbird
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So happy to read of your good results, Enfield. I had a MVD in October 2009 and am medication and TN pain-free. I have some very mild twinges now and then and some hypersensitivity on my scalp and ear on the TN side occasionally but they are nothing like TN pain (and not in the same place), so I think they are a result of 3 kinds of surgery over the years (and only noticeable because the numbness from those surgeries is almost all gone now). I hope you continue to do really well!
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Old 05-30-2010, 10:25 AM   #22
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Default Awesome thread!

I was not a member of the forum when Ella posted her original entry, but just want to say thanks to her and all who contributed to this thread. It is one of the best threads I have ever read. You are commended for sharing such detail and I so hope for your continued relief. You have been very blessed!

On another note - Seems most of the sucessful surgeries have been performed in Canada. Here in the US there is currently such a debate on healthcare reform that I was just curious if there have been any sucess stories from the US. We have all been lead to believe down here that the Canadian healthcare system is absolutely horriffic and that we should not support any sort of government health system. Any thoughts on this?

Not to stir up a debate, and if this is too off topic moderator, please remove.

Thanks!
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Old 05-31-2010, 09:10 AM   #23
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Yes, there are success stories from the US. MVD was done in Pennsylvania.
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Old 05-31-2010, 07:12 PM   #24
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Thanks Jean, glad to hear that!
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Old 06-24-2010, 02:49 PM   #25
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Sadly Ella's pain has returned after 5 years of freedom . She is back on meds and is starting to get a bit of relief with the meds .


PEACE
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Old 07-22-2010, 11:11 AM   #26
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I am happy to be able to correct the post above. My pain has not returned, at least not permanently.

July 22, 2010
5 year anniversary of my MVD

This year was a little different. I had a few more shocks than last year. Still had my usual seasonal blip in April like I seem to have every year. When I say blip, I mean about 5-7 hours of mild shocks, maybe 2-3 every hour and then it disappears for another year.

This year in June I had a 2 day problem. I had a huge shock in the middle of the night that jolted me out of a deep sleep. The attack continued very strongly for two days. I actually was convinced my TN had returned in full glory. I went back on a low dose of Tegretol and it seemed to work. I stayed on the Tegretol and had no shocks for a few days and then reduced till I was off the drug. The shocks were gone and I have not had any since. That weekend was a horrible stormy hot and humid weekend and my hormones were all over the place. I am starting to go through peri menopause and besides the TN, I have lots of other lovely symptoms that go along with this.

How am I now? Nervous. I am concerned and watch the days on the calender to try to time when the next possible attack could come (to coincide with my cycle). I have read how a sudden spike or drop in estrogen can affect the trigeminal nerve and I am convinced that is what is happening to me. I believe it falls under the heading of "Menstrual Migraines" http://today.msnbc.msn.com/id/4465789

I have an appointment booked with my neurosurgeon for October just to see if he can rule out another compression, but I am pretty sure that if it was a compression the TN would be more consistent.

Physically, I am fine and 95% pain free and 100% medication free.
Emotionally, TN has a strong hold on my life.

I still don't take any day for granted without TN and without Tegretol.
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Old 08-21-2010, 06:29 PM   #27
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Hi Ella,

I was just reading through your post and thought maybe you could help me figure out what's going on. First of all, I'm so happy that you have made it 5 years doing as well as you have. I had my mvd June 16, 2009 and also gamma knife done May 2009. I did really well the first year. I wasn't able to go completely off the tegretol. I take 600mg a day now since my surgery. I also notice I will start having some shocks around the week before my period. Last month and this month it's been a little more consistent. This is day 9 of experiencing the shocks. Sometimes 4-5 a day, and the last few days only about 1 a day. I went up to 700mg when this started happening. Usually they're mild shocks, but occasionally a sharper one. I'm starting to wonder if the tn is going to come back full force. I'm afraid to eat and to brush my teeth again. I'm just wondering if you could share any thoughts as to what you think may be going on with me. My original problem was veins that were growing and compressing my nerve. I'm worried that maybe they're growing back already. My neurologist, (not my neurosurgeon) doesn't really have any idea what the problem could be. Any thoughts would be appreciated.

Thank you,

Laureen
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Old 10-31-2010, 10:44 PM   #28
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Hi Ella,
I'm scheduled for an mvd on November 17 and your diary has been a great comfort to me. I am very anxious about the surgery but I suppose this is normal.
Thanks very much, m3guitar
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Old 11-01-2010, 09:48 PM   #29
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Hi and thanks for your diary. I am getting an mvd in 2 weeks. I'm quite anxious about it but determined as well. Your experience has prepared me. Thank you, Mark
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Old 11-02-2010, 08:54 AM   #30
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Hi Mark! I just read your first post and was about to write and tell you to read Ella's account of her surgery - looks like you found her!

Do you mind sharing with us where you are having your surgery? I live in Nashville and was just curious. If I ever decide to go with the surgery I will most likely use Vanderbilt, but my last neuro doc was over there and I quit going to him because they were too quick to suggest surgery - and thank God I am not at that point yet.

Good Luck and let us know how you are doing!

All the best for a successful procedure,
Rhonda
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