Contemplating MVD, is it the right thing to do?

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Permalink Reply by CHRIS on February 14, 2012 at 11:34am

Hi Alan

I see your post was 10 months ago. How are you doing? Did you ever have the surgery, did it work for you?

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Permalink Reply by Denise on February 17, 2012 at 12:01am

I feel the same about the drugs vs. surgery.  The thought of this kind of surgery seems scary.  I have had two injections into theback of my ears into the GP nerve.  It has not been successful.  My next step is to go back to the neurosurgeon in Charleston and see what he has planned for me now.  I have got to get rid of this pain.  BTW, I am having a physical next week and I want my doctor to be sure and chck my liver enzymes since I have been on this pain medicine for 18 mths myself.  May God help us all.

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Permalink Reply by taylor210 on February 17, 2012 at 2:35pm

Hi Denise:

My husband has GP and is often miserable due to the pain.  He ws on Gabapentin and Lyrica and is taking Elavil now prescribed by a pain specialist.  He is going to see a neurologist at the Mayo in Jacksonville, FL next month.  Can you tell us who you are seeing in Charleston?  That would be a lot closer to us. It would be good to have someone who has seen this before.  It took almost 2 years to get a diagnosis.  Thanks for any help.

Denise said:

I feel the same about the drugs vs. surgery.  The thought of this kind of surgery seems scary.  I have had two injections into theback of my ears into the GP nerve.  It has not been successful.  My next step is to go back to the neurosurgeon in Charleston and see what he has planned for me now.  I have got to get rid of this pain.  BTW, I am having a physical next week and I want my doctor to be sure and chck my liver enzymes since I have been on this pain medicine for 18 mths myself.  May God help us all.

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Permalink Reply by Jade O. on February 17, 2012 at 5:49pm

Alan,

After trying every drug, alternative treatment, and a couple of nerve blocks, nothing has worked for me. It's been 3 years without any remissions and it's all day, everyday. I wanted to make sure I tried everything known to man before I considered surgical intervention. It's a scary thing and I really didn't want to do it, but I'm having an MVD on Tuesday. I will let you and the rest of the support group know how my progress is after the surgery. Thank God we all have each other to lean on/talk to.

Jade

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Permalink Reply by taylor210 on February 17, 2012 at 7:41pm

Jade:

Good luck on Tuesday!  Keep us posted.

Jade O. said:

Alan,

After trying every drug, alternative treatment, and a couple of nerve blocks, nothing has worked for me. It's been 3 years without any remissions and it's all day, everyday. I wanted to make sure I tried everything known to man before I considered surgical intervention. It's a scary thing and I really didn't want to do it, but I'm having an MVD on Tuesday. I will let you and the rest of the support group know how my progress is after the surgery. Thank God we all have each other to lean on/talk to.

Jade

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Permalink Reply by Denise on February 18, 2012 at 2:31am

The doctor in Charleston is Dr. Patel.  He diagnosed me with Eagles Syndrome but teh GPnerve is affected.  He wanted me to have the injections first.  Dr Kanos in Greenville, S.C. referred me to Dr. Patel.  He says that he knows that between the two, they will help me.  The injections I received were from Dr. Goltra from Charleston Imaging.  He is great too.  Unfortunately the njections haven't helped.  Good Luck to your husband and you.  I know this is as tough for you having to help him through the highs and lows.

 

Hi Denise:

My husband has GP and is often miserable due to the pain.  He ws on Gabapentin and Lyrica and is taking Elavil now prescribed by a pain specialist.  He is going to see a neurologist at the Mayo in Jacksonville, FL next month.  Can you tell us who you are seeing in Charleston?  That would be a lot closer to us. It would be good to have someone who has seen this before.  It took almost 2 years to get a diagnosis.  Thanks for any help.

Denise said:

I feel the same about the drugs vs. surgery.  The thought of this kind of surgery seems scary.  I have had two injections into theback of my ears into the GP nerve.  It has not been successful.  My next step is to go back to the neurosurgeon in Charleston and see what he has planned for me now.  I have got to get rid of this pain.  BTW, I am having a physical next week and I want my doctor to be sure and chck my liver enzymes since I have been on this pain medicine for 18 mths myself.  May God help us all.

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Permalink Reply by JBimadingdong@aol.com on April 25, 2012 at 8:54am

Hi...I THINK I am having MVD next month at the Mayo Clinic in Minn.  I have had GN for years now, not being diagnosed early on.  I was diagnosed at the Mayo and been on different meds for awhile now.  I am putting my faith in God to get me thruough.  As you know, this is not a life.  I never know when I will get an "episode".  I do not have trigger points.  Was considering the gamma knife but I do not think it is the answer.  We are a rare bunch.  God bless and good luck. JB

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Permalink Reply by sandy on April 26, 2012 at 5:32pm

Hi Jb....Good luck with your upcoming surgery.  I hope you find relief!!  Was wondering why you are doing MVD instead of Gammaknife.  I am tring to do research for my son who has just been diagnosed.

Thanks,

Sandy

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Permalink Reply by taylor210 on April 28, 2012 at 8:02am

My husband was diagnosed with GN at the Mayo Clinic in Jacksonville after 2 years and 11 physicians,,,, He is having MVD week after next.  We were told this procedure is the best chance to get rid of this miserable disease,  Will keep you posted with results.

JBimadingdong@aol.com said:

Hi...I THINK I am having MVD next month at the Mayo Clinic in Minn.  I have had GN for years now, not being diagnosed early on.  I was diagnosed at the Mayo and been on different meds for awhile now.  I am putting my faith in God to get me thruough.  As you know, this is not a life.  I never know when I will get an "episode".  I do not have trigger points.  Was considering the gamma knife but I do not think it is the answer.  We are a rare bunch.  God bless and good luck. JB

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Permalink Reply by Tracy Z. on May 1, 2012 at 9:41pm

Hi Alan,

 

I had MVD in December of 2004. I had tried all the drugs and any & all treatments available. I wish I had a diagnosis four years earlier when I first became sick. MVD Surgery wasn't a bad crainial surgery. I was uncomfortable after the surgery & had a CSF  leak from a broken Mastoid bone that developed into Meningitis & Motion Sickness,  but I would do it a million times over. It basically stopped my constant Ear Pain. Now it only hurts a few times a month & the tinnitus has stopped.  Please don't be afraid.

Tracy Z.

 

 

 

 

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Permalink Reply by sally on May 2, 2012 at 6:42pm

Alan,
I went to Mayo in Rochester, Mn. but I was told I would probably need 2 surgeries as I HAD trigeminal, glossopharyngeal and some signs of vagal involvement as well. I was in alot of pain but the glosso part was the worst as I couldn 't talk, swallow without intense pain in my throat. Yes, like a cattle prod. I was able to control the pain with increasing doses of a combo of tegretal and trileptal but then my sodium levels dropped too low. I went to a fascial pain clinic in Minneapolis and was referred to Dr. Stephen Haines, the head of neurosurgery at U of Mn. and he performed a MVD on all 3 nerves one year ago and I have been painfree since. He does these surgeries ALOT, trained under Dr. JANETTA, and was very confident. I have no side effects either! It is so important to find a surgeon that operates routinely in the posterior fossa. I was so blessed to have found him and his exceptional team. My heart goes out to you. I would be happy to share more of my experience with you at anytime.

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Permalink Reply by JBimadingdong@aol.com on May 7, 2012 at 12:39pm

Hi again, JB here.  I had no idea what to expect about the leak...THANK YOU!  So you too went thru the zombie existence!  I thought it was age and even worse.  I am soooo tired all the time.  I nap everyday.  I am also forgetful and feel like I am loosing it.  Did the Dr. mention a feeding tube, stroke, hearing loose, blindness as possible risks? Don't find this stuff on the puter but was mentioned by surgeon and changed my mind last visit.  Now I know I just cannot go on like this.  I have trouble finding your answers but keep looking. lol thanks again. JB

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