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MVD-post surgery daily diary

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Old 11-19-2007, 07:05 AM   #11
ella138
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Exclamation Questions to ask your Neurosurgeon

As I started this diary after my surgery, I never included a list of questions to ask prior to the procedure. But now after having gone through an MVD, there are many questions I wish I did ask before the procedure and never knew too, so here is a list of questions I might ask if I had to do it over again.

Remember, there is no such thing as a stupid question.

Go in with all your questions written down and it’s best if someone is with you, as it is amazing how much you miss when you’re nervous.

Neurosurgeon Choice
•How many of these surgeries have you performed?
(If you are having the procedure done at a teaching hospital you may want to make sure the surgeon you are speaking with is the one that will actually be doing the procedure.)
•What is your PERSONAL success rate?
•What do you consider to be a successful MVD? Some doctors will tell you “being pain free” and some will tell you a “reduction in your medication”.
•Do you think I am a good candidate for MVD?

Actual MVD Procedure
•What are the complications that may arise?
•I’ve heard some people have a feeling of “ear fullness”. What are the chances of that happening to me and if so how long does it usually last?
•Is numbness after surgery something I need to be concerned about?
•Do you put my head in a halo and if so will there be pain from that after the surgery?
•What do you use to separate the nerve from the offending vessels compressing the nerve?
•Is there a chance this substance (usually teflon) will be rejected by my body?
•Is there a chance it could move? Even under severe movement (like a roller coaster for example)?
•How large is the hole you will be drilling into my skull?
•How large is the incision?
•How much of my hair will be shaved?
•What can I expect to happen when I check into the hospital that day?
•Should I expect to be nauseous or dizzy after surgery?
•Will I have headaches after surgery and if so, how long will they last?
•What can I expect to see and feel when I awake from the anesthetic?
•Is the relief from TN immediate or can it take time till I feel relief?
•What do you use for pain management after surgery?
•Can you prescribe something for presurgery nervousness for the few days prior to surgery?

Recovery
•How long will the recovery be?
•How long will I be in the hospital?
•When can I resume regular activities?
•When can I return to work (make sure he knows if you have a desk or a physical job)?
•When can I drive again after surgery?
•When can I wash my hair after surgery?
•Will I need help for a while and if so, for how long?
•If I have a question during my recovery, is there someone I can get a quick answer from?
•How do I wean off my TN medication?
•Can I wean off the medication slowly?
•How long after surgery will I have a follow up appointment with you?


Obviously you will need to tailor these question to suit your own situation.
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Old 02-19-2008, 11:56 AM   #12
JACKS647
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Thank You So Much For Your Diary...on Sept. 2006 I Had My First Encounter With Tn...i Don't Know If It Was Just Coincidence, However, It All Started After I Had "shingles"...

It Landed On The Left Side Of My Face...it Felt Like I Had A Spider Under My Skin Crawling Around And Making A Spider Web...my Left Eye Felt Like I Had A Spider Web On It...i Kept Brushing My Eye With My Hand, Thinking It Would Go Away...but It Did'nt Go Away...the Itchy, Tingling Sensation Was Driving Me Crazy...i Decided To Go To A Neurologist...he Said, He Thinks I Might Have Tn...so, He Put Me On Lyrica...expensive...i Asked The Phamacist If There Was A Generic And He Said I Could Try "gababentin" 600mg/3 Times A Day...i Went To Another Neurologist...had An Mri,spinal Tap And All Came Out Normal...

The Gababentin Has Helped, However, I've Gained Over 25 Pounds...ouch...i Don't Have The Pain That You Had, But I Do Have Numbness On The Left Side Of My Nose, Cheek, Lip And My Tongue...sometimes My Tongue Has A Sensation Of Feeling Frozen...wierd...

I Plan On Going To #3 Neurologist In May 2008....i Will Bring Up Mvd...if I Have No Success With That Dr....can You Give Me Your Dr. Name And Where He Is Located...i'm A Us Citizen, However, My Husband Is Canadian...we Really Don't Have A Home...we Live In A Motorhome On Wheels....my Husbands Job Requires Us To Move Around The "us" And It's Easier To Move When You Have A House On Wheels...so, If I Have To Go To Canada To Have The Surgery, It's Not A Problem...

I'm Glad You're Feeling Better...has The Numbness In Your Lip Gone Away Yet?

Anxiously Awaiting Your Reply....
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Old 05-22-2008, 09:52 PM   #13
leejcaroll
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Quote:
Originally Posted by ella138 View Post
i had this on the Braintalk site, so I thought I would update this one too.

July 22, 2007
2 year anniversary of my MVD.

Just thought I would let you know how I am doing two years post MVD.

Physically
•Still off all meds
•Still pain free
•Managing to sleep well even without Tegretol (that took a while)
•Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during).
•Small area of permanent numbness in the lower lip/chin area
Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me .
•The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either.

Emotionally
•TN still has an emotional hold on me
•I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums.
•I’m still afraid to fly for fear of setting off an attack
•I’m still afraid to go to the dentist for fear of setting off an attack
•I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol

So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over.

I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs )

I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me.
I am so happy for you that it worked. My tics stopped 10 years ago and unfortunately the fear of them coming back is always there. It is an insidious part of this disorder.
I was unlucky in that my MVD, done by Peter Jannetta in 1979, was not successful. It also left me with a facial paralysis of the left side of my face. There has been some movement return but it is almost 100% gone still in my forehead and the smile looks like, as one stranger commented, I had a stroke. It also causes my eye not to close completely and I have had to have it sewn shut a few times over the years. (It was supposed to be closed permanently after the MVD but it was so ugly I had opened AMA.).
I have friends who have had successful MVD's and when they work, as with you, it opens up a whole new life.
Again, congratulations for your success. And also for your staying here. Often, once people no longer have the pain they leave the groups they are with/on not wanting to be involved anymore. It is a true kindness that you want to stay and help.
leej
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Old 05-23-2008, 09:11 AM   #14
Burntmarshmallow
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I agree with that !!! Ella very kind and caring to keep sharing support and posting.
big thanks from me too
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Old 09-29-2008, 02:01 PM   #15
Sundog30
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Default MVD Post Surgery Diary

Hi Ella,
God bless you for sharing your story. I hope I am still a long way from surgery as my Neurologist wants to try more meds. first. But, he also just referred me to a Neurosurgeon, so it's defiitely a possibility. I loved reading your story and it has helped me, as it did others, very much. Thank you....Bonnie
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Old 08-01-2009, 08:11 AM   #16
ella138
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Thumbs up Update

July 2009

Hi All,
Haven't been in here for a while, but I thought I would check in and give you an update on the results of my MVD.

This month marked the 4th anniversary of my surgery and I am pleased to report that I am still pain free and medication free.

That is not to say that I haven't had the odd twinge or shock, but I have been able to find a common denominator. If I have an episode (and it is only a couple of times a year) it is always within a day or two of the onset of menstruation. The other interesting thing, is that in the last 3 years I have always had an episode in the month of April.

Conclusion: Menstruation + change of season = TN symptoms

I am thankful for everyday the sun rises and I don't have to suffer the pain of TN or the side effects of the medications. I take no day without TN for granted. TN still has a strong emotional hold on me. I doubt I will ever be free of that.

I am always available to help or ask questions. I do not pop in here as often as I should. If you would like to reach me, please send an email to ellacjn@gmail.com
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Old 08-01-2009, 02:31 PM   #17
Burntmarshmallow
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the 30th of July was my 7th yrs aniv of my stim implant
I am still med free but not tottaly pain free tho have good enough control over things most times. still have those days.
so high five to you and me
Thanks so much for posting an update I dont ever go to b.t. so it is great to hear from you Ella and I see Jean C posted too
always great to hear about old time contacts
MAY YOU ALWAYS stay pain free and many blessing to you and yours .
PEACE
BMW...Tina
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Old 08-20-2009, 12:53 AM   #18
findingjulz
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Quote:
Originally Posted by ella138 View Post
i had this on the Braintalk site, so I thought I would update this one too.

July 22, 2007
2 year anniversary of my MVD.

Just thought I would let you know how I am doing two years post MVD.

Physically
•Still off all meds
•Still pain free
•Managing to sleep well even without Tegretol (that took a while)
•Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during).
•Small area of permanent numbness in the lower lip/chin area
Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me .
•The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either.

Emotionally
•TN still has an emotional hold on me
•I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums.
•I’m still afraid to fly for fear of setting off an attack
•I’m still afraid to go to the dentist for fear of setting off an attack
•I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol

So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over.

I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs )

I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me.
Wow, Ella, I had my MVD at a Hospital in Tampa I was under heavy sedation and some a-typical symptoms. I left with a walker because of all the pain meds I had been on and it wasn't until February when I went to a clinic and stayed 6 days to get off all the drugs then I got Anesthesia Dolorosa. I wore a halo for my first surgery which was Stereotactic Radiosurgery, no changes in the pain. Many Neurosurgeons/neurologists told me an MVD was risky, but my husband was anxious for me to be well as were my family members so I did. Now, my pain is in all three nerve areas of the face as before it was in the lower jaw. It is the worse pain I have ever had, I am scared to death of it. I take a different pain medicine not Oxycontin like before when I was up to 80 mg 3x per day -- wow, hard to believe, but I am so afraid even now. So it was 6 months later that I developed the AD. I feel like I am going to die sometimes because the pain is so intense and I wonder what will happen if I become immune to pain medication? It has been 10 years since I got TN and I was 40. Some drs. just blew me off and said I was too young. Now, my 76 year old mother is having same symptoms. Congratulations to you and I pray this pain I have will find a way out. God is my neurosurgeon now. Way to go, woman. Thank you for sharing your experience.
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Old 01-11-2010, 10:07 PM   #19
adimaria
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Quote:
Originally Posted by ella138 View Post
i had this on the Braintalk site, so I thought I would update this one too.

July 22, 2007
2 year anniversary of my MVD.

Just thought I would let you know how I am doing two years post MVD.

Physically
•Still off all meds
•Still pain free
•Managing to sleep well even without Tegretol (that took a while)
•Some twinges or sensations once in a while, which may or may not be TN related and often related to the timing of my menstrual cycles (a few days before or during).
•Small area of permanent numbness in the lower lip/chin area
Indentation in the bone on my scalp has not gotten any better or worse. Wearing sunglasses for an extended period of time still bothers me .
•The ice pick headaches have definitely gotten better. Not gone altogether, although I’m still not convinced they are TN related either.

Emotionally
•TN still has an emotional hold on me
•I still assume that every sensation I feel is TN coming back, when at my age (50 in a few days) the sensations are probably more likely caused by my receding gums.
•I’m still afraid to fly for fear of setting off an attack
•I’m still afraid to go to the dentist for fear of setting off an attack
•I still carry a few tabs of Tegretol in my purse along with my Advil and Tylenol

So for me, day-to-day life has become very normal. It’s the underlying damage that Trigeminal Neuralgia has done to my confidence to move past this long and painful chapter in my life, that I can’t seem to get over.

I continue to not take any day without TN for granted. I was one of the lucky ones for whom the MVD worked thanks to an excellent experienced MVD surgeon (and whomever was watching over me upstairs )

I would be very happy to answer any questions for anyone who is about to venture on this journey. Please just pm me.

Hi Ella,

Are you able to share your Doctor's name and/or contact info.

Thank you.
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Old 05-29-2010, 06:29 AM   #20
enfield1965
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Default My MVD Experience

Thanks so much for this diary of your MVD experience! It helped me a lot. I had my MVD on the 27th of April 2010 in BARTS Hospital in London c/o Mr Habib Ellamushi. I was very scared of this procedure and was due to have it in 1998 however the surgeon at that time said there was no evidence of artery compressing the TN and instead we opted for alcohol/glycerol injection. That lasted about 6 Months as did the Gamma Knife the following year. Last year after 14 Years of pain I decided to go for MVD. The first MRI scan didn't show any compression however interestingly on the 2nd examination it did show up quite clearly. Now at 5 weeks following surgery I have had a very similar experience to you. I have been adjusting to sleeping normally again without all the drugs, especially Tegretol! I used that for nearly 14 Years!!
Post surgery I am now feeling much better. I was deaf in the right ear and had tinnitus and that has now pretty much gone back to normal. I too have numbness from my ear down through my lower jaw and along my tongue. I guess that may or may not return to normal but I can live with that if it means I don't have that TN pain! They took bone from my leg to repair the hole they made in my skull.
I am very pleased with the result. I am not taking any medications now. I have also had a few weird pains but they are not like the electric shock, stabbing burning pains that I was having all these years. I thought they could have been pains from the incision and where the bone is healing post op. I am getting used to cleaning my teeth without biting the toothbrush because of the pain and washing my face and splashing water. Also talking, shaving, walking, swallowing and wind on the face. All new experiences and I'm praying to god that this is it and no more pain. 14 Years is a long time. I've been through many procedures including MVD and have taken anti-depressants, anti-convulsants, had countless sessions of accupressure, accupuncture, massage etc and nothing has worked. They even sent me for a years psychotherapy! I return to work 09th of June and am looking forward to reengaging in the world - pain free! Long may it continue. I wish you well. I agree with you that the actual surgery was nowhere near as bad as I had imagined it. Prior to surgery I was in a state of collapse and now having been looked after by an excellent surgical team and also having such a positive result this is something I would definitely have done again, no doubt.
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