MVD/Rhizotomy Scar

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Permalink Reply by sally on February 14, 2012 at 12:25pm

I think my response is for paradise too! Sally

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Permalink Reply by Paradice14 on February 15, 2012 at 8:39pm

Hay Jade, sorry for not getting back to you but there have been so much going on with myself as well as my dad had a stroke and it has been so hectic...so how did your surgery go?  I have been praying for you and hope your pain is gone once and for all.  My pain is everyday and some days are so bad i can't even get out of bed...the pain in the throat/ear just kill me....my email address is sugarnorthblue@yahoo.com and my cell number is 262-224-9921 I would really like to read what you wrote to Dr. Slavin so it gives me some idea what to write.  I was on neurontin but it made me sick and now Im on Tegratol only up to 600mg and it still is not taking any of the pain away, and all my neurologist tells me is to keep increasing it.  How the hell can one take so much and it still does nothing.  Please get in contact with me and I hope your surgery goes well....Debbie

Jade O. said:

Hey Debbie,

I emailed him and that's how I got past the referral.  I got in within a week. I brought my CT scans and MRIs with me. Dr. Slavin says there aren't any blood vessels touching my GP nerve on the left side, but he says they might be on the right. It's hard to see. I have all the symptoms of GPN and have been diagnosed with it by several doctors. Right now I'm on 900 mg of Tegretol, 50 mg of Baclofen and 50 mg of Zoloft. Neurontin worked for me for a couple of weeks and then it wore off. Tegretol worked really well for a few weeks and then wore off more or less. I know it helps me some, so I stay on it. It took my body about 6 months to finally adjust to the side effects of Tegretol. Pain pills don't work for my pain.

I'm in horrible pain as I write this. I do pilates and really don't want to go, as I'm in horrible pain, but I force myself. Give me your email, I will email you what I wrote to Dr. Slavin. I've been pretty busy, wrapping up loose ends and trying to get organized before my surgery. Maybe we can talk next Monday or Tuesday. They are my days off. I hope this helps :)

Jade

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Permalink Reply by Denise on February 16, 2012 at 11:51pm

Sally,

After you had your suregery, what was your recovery time?  A week or weeks?  I know I am headed toward surgery be it GPN or Eagles Syndrome.  I had my second injection on Monday and I am still in the same amount of pain as when I started.  Without my pain medication, I don't know what I would do.  I have tried to maintain some normalcy through all of this but I am close to my breaking point.  I am worried about surgery recovery time.  I have a great job and I can't be out of work for weeks.  My counterpart and I rotate the schedule to cover 6 days a week.  Being out for a great amount of time will be tough. 

sally said:

Jade,
My heart goes out to you in your pain which I remember SOO well. I had successful MVD on my GN (as well as trigeminal and vagal nerves) by Dr. Stephen Haines at University Fairview in Minneapolis, mn. one year ago. I suffered constant stabbing episodes in my throat with any swallowing or talking. It was controlled with increasing dosages of Tegretal and Trileptal over1year of increasing and constant pain but my sodium levels were dropping too low so I went to Mayo but since I had at least 2 nerves involved, they hesitated and said I might need 2 surgeries. They were honest. Truth be told, there are few doctors qualified to operate on both TN and GN. Thank God, I found Dr. Haines who trained with Dr. Janetta and has been doing these cases for years. He is head of the neurosurgery program there. I live in western wisconsin and am willing to help in any way. The frosting on the cake was that he didn't even shave my head-just used some antiseptic gel to plaster my hair out of place!!
Sally

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Permalink Reply by sally on February 17, 2012 at 10:43am

Denise,
Usually the hospital stay is 3-4 days. However, since I had 3 nerves decompressed, I had some difficulty swallowing and needed a feeding tube for a week so my stay was 1 week. I did not have any head, neck or incisional pain postop but did take pain meds for a few days to help me sleep, to keep relaxed, to keep B/P down. I was up walking as soon as the catheter came out but was very, very careful to move gently, no jerking, heavy lifting, bending over for a few weeks until I felt a good mend had taken place. I am still careful today! One never forgets that pain. I am so thankful for each painfree day. I hope your procedure is as successful as mine has been. I did not have any prior procedures. Sally

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Permalink Reply by Denise on February 18, 2012 at 2:27am

Thanks Sally.  I'm glad you are pain free.  I will be one day too.

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Permalink Reply by Paradice14 on February 27, 2012 at 7:07am

Hi Jade, I know you must have had the surgery and i hope it went well.  When you are able to write please let everyone know how it went.  I have prayed for you to be pain free.  Im hoping that Dr. Slavin has read my email.  Thanks for the email you sent him, it helped me find the words i needed.  Hope your surgery went well. Talk to you soon.

Debbie

Jade O. said:

Hey Debbie,

I emailed him and that's how I got past the referral.  I got in within a week. I brought my CT scans and MRIs with me. Dr. Slavin says there aren't any blood vessels touching my GP nerve on the left side, but he says they might be on the right. It's hard to see. I have all the symptoms of GPN and have been diagnosed with it by several doctors. Right now I'm on 900 mg of Tegretol, 50 mg of Baclofen and 50 mg of Zoloft. Neurontin worked for me for a couple of weeks and then it wore off. Tegretol worked really well for a few weeks and then wore off more or less. I know it helps me some, so I stay on it. It took my body about 6 months to finally adjust to the side effects of Tegretol. Pain pills don't work for my pain.

I'm in horrible pain as I write this. I do pilates and really don't want to go, as I'm in horrible pain, but I force myself. Give me your email, I will email you what I wrote to Dr. Slavin. I've been pretty busy, wrapping up loose ends and trying to get organized before my surgery. Maybe we can talk next Monday or Tuesday. They are my days off. I hope this helps :)

Jade

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