5.09.2012

The Doctor Says...

Well my surgeon visit went well! Doctor agreed that MVD surgery is the best option for me. So now the nerves REALLY set in (no pun intended)... Someone poking around inside my brain! I can say I have complete confidence in my surgeon. I like him... He is knowledgeable, experienced, and has a great deal of patience to have me as a patient! Bwahaha! He answered almost all of my 3 pages of questions before I even asked them and answered all of my additional questions thoroughly.
 Surgery date is tentatively set for Tuesday June 12th @ UT hospital. Post surgery I am not allowed to lift anything heavier than a milk jug making things a little limiting. And by far the hardest thing for me with having a preschooler who still wants Momma to pick her up. I will say I kinda learned my lesson on that one when I kept pushing those weight limits after my gallbladder surgery last year. So I promise here and now to do as I am told.

 God is with me, who or what can stand against me? That's my motto from here on out in this journey!

My day otherwise was a difficult one in the brain department. Lots of break through pains.  I'll keep you updated on anything, But for now goodnight. XOXO

5.08.2012

Trigeminal Neuralgia



Wow! Been awhile since I've posted anything... Well I've been diagnosed with a disorder called Trigeminal Neuralgia. Its a nerve condition inside the brain. Fun... right? Yeah not so much.
I had a tooth pulled last year... You may have read Goodbye 31... Well turns out it wasn't the tooth it was the nerve in my head. I've been on different meds to help control the pain. Anticonvulsants (not that I am in having seizures) we started with Gabapentin but even after reaching the maximum daily dose it wasn't enough. I was still having what TN'ers call break through pains.... I can only describe them as the most horrible pain on earth. An electric shock in the head, burning sensation under the eye, stabbing pains in the ear... Tooth pain. Not fun. After the Gabapentin we moved up to what I am on now which is Trileptal. I take 2 300mg Trileptal in the morning and 2 300mg trileptal in the evening. We added Paxil also to help calm the nerve... Im not depressed but I do have a better mood generally. What's the side effects to all the crap I've shoving down my throat you ask... Well I walk around in a fog most of the time. Ive lost all sexual desire or ability to "enjoy" myself during sex. Its been 6 months since I last "made it over the mountain" If you know what I mean. I need sleep like a drug addict needs drugs or an alcoholic needs a drink. I've lost words I used to know, I fumble my words (even more that I used to prior to TN), my concentration is shot. I'm not me at this point and I miss me. 

So what else can I do you ask? Well basically I have two options:
  • Gamma-knife radiosurgery (GKR). This procedure involves delivering a focused, high dose of radiation to the root of the trigeminal nerve. Because of GKR's effectiveness and safety compared with other surgical options for trigeminal neuralgia, the procedure is becoming widely used and may be offered earlier than other surgical procedures. Gamma-knife radiosurgery uses radiation to damage the trigeminal nerve and reduce or eliminate pain. Relief occurs gradually and can take several weeks to begin. GKR is successful in eliminating pain for the majority of people. If pain recurs, the procedure can be repeated. Fewer than 5 percent of people who undergo this procedure experience side effects, which may include lasting loss of facial sensation. The procedure is painless and typically is done without anesthesia. 

  • Microvascular decompression (MVD). This procedure involves relocating or removing blood vessels that are in contact with the trigeminal root.
    During MVD, your doctor makes an incision behind the ear on the side of your pain. Then, through a small hole in your skull, part of your brain is lifted to expose the trigeminal nerve. Any artery in contact with the nerve root is directed away from the nerve, and the surgeon places a pad between the nerve and the artery. If a vein is compressing the nerve, the surgeon typically will remove it.
    MVD can successfully eliminate or reduce pain most of the time, but pain can recur in some people. While MVD has a high success rate, it also carries risks. There are small chances of decreased hearing, facial weakness, facial numbness, double vision, and even a stroke or death. Most people who have this procedure have no facial numbness afterward. Note that if no artery or vein appears to be compressing the nerve, your surgeon may sever part of the nerve, instead. This procedure is called a rhizotomy.
  •  
Well after careful consideration we have decided to go with the Microvascular decompression (MVD) surgery.Why? Well even though the Gamma Knife (GK) sounds safer and it is in the short term... My surgeon said at my age he would only do it twice due to the fact that it majorly raises your chances of a brain tumor. Um no thank you? Plus GK can last 5 years or it could last 1. And at that point my only option would be MVD... Why do the GK twice and expose my head to all that radiation if in the end I am going to have to have the MVD! Oh and why spend the money on the GK twice and then have to spend the money on the MVD too? Ok so I sound a little on the cheap side there huh? We'll call it thrifty... Guess I get that attribute from my momma.So that's why we've chosen MVD.  Even after my MVD surgery I will still have to be on meds for a minimum of 6 months (according to my surgeon). I know it sounds scary and let me tell you it is TERRIFYING! But so is living on meds forever and feeling the way I do. I still want at least 1 more baby maybe even 2... Can't happen with all the crap I'm having to swallow every day.  Tomorrow I will meet with my neurosurgeon for the second time to ask 3 sheets (so far) of questions even though I've done my homework about MVD and about TN.


My person....I have the most AMAZING man (who I've been blessed enough to be married to for almost 13 years) who has been my rock through the last  months. He's been SO SO understanding when I've needed to sleep till 11 in the morning or at night when I just couldn't get off the couch to make dinner (crock pot recipes welcome!). And especially with the sex thing... And yes we're still trying to get me "over the mountain"! Sometimes you just have to laugh... Right? But as I said before he is my rock and helps more than he should have to... But he does it all without complaint. I am SO very blessed and I'm pretty sure he's a keeper ;)
  I've also have been blessed with an AMAZING family and set of friends who have been there for me in so many ways... My life is full of wonderful still and I am so grateful to have so many wonderful people who really love me.

My amazing hubby and I in Paris this March 2012



If God brought me to this.... Then I know HE can bring me through it! I know He's trying to teach me something... And my guess so far is that I'm stronger than I think I am when I lean on Him for that strength. He will have more to teach me in this life and maybe in this journey. 

Well wish me luck and say a prayer... Hopefully Ill have some answers to share tomorrow... And maybe even a surgery date... We shall see...



A little funny to sign off... Have a good one y'all!