Hi I'm candylee..had mvd

Having MVD surgery in 8 days at Hopkins…feeling a little anxious…ok a Lot anxious :slight_smile: Does anyone have any last minute advice?

Just wanted to send good vibes, no advice since I haven’t had any surgeries (yet)

Just look after yourself. It takes some time to recover. Best of luck.

From all that I’ve heard, the surgical team at Johns Hopkins is quite competent. Your doctor should have provided an after-care information sheet. From talking with a number of MVD patients over the past 20 years, I would suggest that you plan on a month to six weeks at home after the procedure. And you may want to make arrangements for a family member or friend to check in with you each day in person, if you don’t already have someone living with you. You can expect some residual effects after the procedure (some people get total pain relief from the time they wake up, and some don’t). The most common lasting effect is facial numbness on the side that was originally painful. That can be a blessing in comparison to the pain itself. You should be evaluated in the hospital before release, for less common effects.

Morning! I’m nearly 24 hours post op and I have to say it’s been much better than I expected! Shooting pains GONE and dull ache nearly resolved. Biggest surprise though is how painful the wound site is. I’d been told to expect it, but I didn’t really believe them! So take the offered pain relief and best of luck!

Ty everyone for warm wishes! I will try to keep updating progress over next couple months to help others who are reading these posts for info (as I have for last year!)

Hello MVD in 8 days,
FYI, I had MVD surgery one year ago, and a very successful surgery with no more Trigeminal pain at all. You will feel even better when your off the meds altogether.
What do want to caution you is I did have a complication from the surgery that I was not told about. I have before the surgery never had any Tinnitus buzzing in my ears. Now since the MVD surgery I have Tinnitus that I hear 24/7. I have gone to ENT’s and my surgeon, and the answer is nothing can be done to cure it. It has been very difficult to sleep, and I have been training my brain to accept it. I now can sleep at least a good four hours a night at most. After surgery one hour for months at the most.
I just wanted to make you informed of this from my experience.
I wish you all the best and anything is better than the TN facial pain my friend.
Please have a discussion with you neurosurgeon, and have understanding of any unforeseen complications. Mine never did. I wish you the best.

To bob1951 ty for info and concern…unfortunately i already have tinnitus in both ears for last few years. It is another condition to add to my list

I should give my history and list my conditions for anyone out there trying to find help and empathy like I’ve been doing on this forum. I have read and read and cried and prayed going through everyone’s posts but never contributed my story…so here it goes:

  • Chronic Myofascial pain(being treated with dry needling,trigger point injections,nucynta).
  • Major depression(for multiple reasons,being treated with anti depressant).
  • MULTIPLE back problems(too many to list lol…but definitely is a whole other beast to deal with including nerve pain/damage. Treating with nucynta).
  • Tinnitus inn both ears(including pulsatile)
  • gall bladder removed(gangrenous), fatty liver disease(non-alcoholic), iron and vit D deficiency, tennis elbow(have a tear), muscle spasms twitches and zaps whole body.
    Forgot to mention rls and plmd…trying ropinirole.
  • Migraines.
  • TN1 started first on right side all 3 branches, now have it on left side as well.
  • TN2 developed in last year bilateral as well.
  • deep ear and throat pain(GN) started last month.

Oh…sorry…i use gabapentin for TN

My goodness i forgot to say there is a compression on my mri on right side…thus the mvd has been scheduled by Dr. Lim at Hopkins(he will only state that this surgery is for my TN1 type only…but I’m praying it will help type2 as well :wink:

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Hi Candylee
Thanks so much for your info.Please keep us all informed as you recover from your surgery.I am in awe over the hope and sharing and caring on this web-site.No trolls.Everyone hoping and praying for the best for everyone else.
Now I got to look up nucynta.All these meds I never knew about.

Candylee, I wish you all the luck. Dr. Lim did my rhizotomy 5 months ago everyone told me he was the best for that. Just make sure that when you are dismissed you have a contact person to call. The take home instructions didn’t tell me everything. Keep us informed. Good luck. Gloria

Candylee: So sorry to read about your various ailments. Let me try to reassure you on the upcoming MVD. I had mine way back in 1992 when the surgery wasn’t as advanced as today. However, I awoke from anesthesia totally pain free. Ate a carrot in neuro ICU for the first time in 7 years. Recovery was totally uneventful. I went back to work in 10 days. Of course all patients are different. My pain returned in 4 years and on meds for years. Then into remission almost 12 years ago. Some minor flares but am totally drug and pain free now. Wish you the best of luck and hope your MVD is as uneventful as mine.

Again thanks everyone for warm wishes and prayers…I wanted to let you know that day before my surgery when I go in for mri I will also be participating in a research project for TN! I had to sign consent forms for testing sensations on my face…I don’t know all that’s involved but will update it…I also allow them to collect some of my csf during surgery. The student was thrilled I consented…she said it’s hard to get people to agree to it. I find that hard to understand…I want to contribute to a cure! As we all do! Ok…3 days and counting…

Hi CandyLee, It sounds like you at some stage has had a whiplash or neck injury. When sitting use a neck support pillow to immobilize it. Also get yourself onto some Vit D - 5000 per day, every day, Vit B mega dose so you are taking at least 100mg per vit B its good for nerves, anxiety and nerve pain. Sounds like you need magnesium for muscle spasms and pain too, it also helps sleep and prevention of restless legs. As soon as you have the operation, wean off your gaba and any other med for TN, its silly taking them if your operation is doing the job therefore you wont need them. Also wean very slowly off your anti depressants, they do more harm than good and up your vitamin and mineral intake and stop ALL SUGAR and drink lots of water, regardless of thirst.

Hi, I had MVD 2 months ago and I am now totally deaf in my right ear from it. I am dizzy and I have a hard time keeping my balance. I did not have any of this before surgery.
The TN pain is gone though and I am no longer on meds so that is a help. Good luck to and warm wishs.

The good news is my MVD took away the sharp bolting pain. The incision site is painful & it took at least 6 weeks to heal completely, I would suggest you have someone to help you when you come home from the hospital.
Wishing you all the best for a successful & speedy recovery.

Hi Candylee, My MVD was in 2014 and had no problems, other than constipation from the pain killers. John Hopkins is a great hospital so try not to worry. We’ll all be cheering for you !

Hi everyone! I’m now 5 days post op and have a LOT to tell you. Unfortunately if I’m not sleeping I’m resting my eyes…I will be giving all the details as soon as i can function better…God Bless