My experience with MVD

1

When I started to look into MVD as an option I came here to the MVD group and read everything I could of everyone’s personal experiences. It helped a lot and so in turn Ive decided to share the story of my MVD all in one place here in the MVD Group as well.
Easier to follow my journey.
I’ll post any updates here too.

If anyone has questions feel free to message me anytime. Although ultimately it’s a personal decision it helps to hear from others, good and bad to aid you in making an informed decision.

A photo of my incision a day or two post-op is attached below.

http://www.livingwithtn.org/forum/topics/just-got-the-call-on-a-wait-list-for-mvd?groupUrl=mvds&groupId=2413731%3AGroup%3A27917&id=2413731%3ATopic%3A253450&page=1#comments

http://www.livingwithtn.org/forum/topics/i-m-off-to-see-the-wizard?commentId=2413731%3AComment%3A294292

http://www.livingwithtn.org/forum/topics/update-on-mimi?id=2413731%3ATopic%3A295097&page=1#comments

http://www.livingwithtn.org/forum/topics/7-days-post-mvd-1?id=2413731%3ATopic%3A296770&page=1#comments

http://www.livingwithtn.org/forum/topics/6-weeks-post-op-mvd-update?commentId=2413731%3AComment%3A309502
309-image.jpg (46.5 KB)

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http://www.livingwithtn.org/forum/topics/mvd-update-3-months-post-op



I can’t believe it’s been 3 months since my MVD…thought I would share a quick update…

The most important thing is that I remain TN pain free!



Sometimes I feel the twinges of the beginning of pain, no pain just a hint or maybe it’s a reminder that you never really escape TN all together. It’s enough to cause a little fear but never amounts to anything, Thank Goodness!



Because of my year long isolation my immune system is a little weak, I’ve had a 24 hr flu bug 2 weeks ago and am currently getting over a cold that has lasted over a week and sucked out what little energy I had to begin with.



I’m still very low energy, I really expected ( despite the flu and cold) that I would have more energy at this point, but not so. My doctors aren’t concerned and keep reminding me that it takes time to heal and build energy especially since my lifestyle was very sedentary due to TN the past year.

Fair enough, it’s just me really wanting to live again! And not being patient!



I attempted to wean a little more off my Tegretol this week, a half pill was suggested by my Neuro. I’ve been off the Dilantin and Baclofen since week 3.

Well, after 3 days the pain was present again, so I will not attempt weaning anymore, for a long time…it’s just too much.

The reality is I’m pain free at 1200mg Tegretol , I look at it this way;



I need 800mg for my right side and 400mg for my left MVD side.

That’s ok with me considering before MVD I had horrid pain 24/7 on my left side , on 3 meds at high doses and NO relief.

MVD was a success for me.



The short term part of recovery from mvd can be measured by hours awake,food eaten, incision healing, pain receding and meds tapered down. It’s more visible.

The long term part of healing is much harder to measure, it’s mostly invisible.

It’s the physical and emotional healing that takes place, weeks and months after the surgery recovery is done.

It’s the invisible part of healing.

The fatigue and low energy, incisional discomfort, pressure in the head, and the emotions that come to the surface now that the pain isn’t the constant focus.

I wasn’t prepared for that, took me a little by surprise.



Living with TN this past year changed my life …BUT I didn’t realize that it also changed me. So the emotional recovery is a bit more complicated .

The challenges are there a long time after the trauma.



All that being said, I am very grateful that my MVD surgery worked to take away the non-stop horrendous pain I suffered. My NS, Doctor and Neuro are also very pleased with how I’m doing. One day at a time, one foot in front of the other…



Would I go through MVD again? In a heartbeat!



Mimi xx

http://www.livingwithtn.org/forum/topics/received-my-mvd-surgical-r…

My Surgical Report
Thought it would be interesting to share…

It was enlightening to read, I was told 3 blood vessels were found compressing the nerve when in fact the compression included 2 arteries, and a vein.

If I’m to understand it correctly …

Remember no compressions were ever seen on MRI and my left sided TN was predominantly Type 2 and some Type 1 that became resistant to meds.



Procedure;

The patient underwent general anesthesia with endotracheal intubation and was positioned right lateral decubitus with her head secured in a three-pin mayfield head brace. The left retroauricular region was prepped and draped and local anesthetic infiltrated. A linear incision was opened through successive layers nd a self-retaining retractor placed. A retrosigmoid craniectomy was fashioned with a high speed bur and rongeurs to the limits of the sigmoid sinus and transverse sinus. The mastoid air cells were entered and thoroughly sealed with wax. The dura was then opened and reflected anteriorly.



The operating microscope was brought into use. A rubber dam and cottonoid slider were advanced over the anterior superior aspect of the cerebellum that was gently elevated. The deep arachnoid over the 8th cranial nerve was widely opened. A large leash of petrosal bridging veins was encountered. The most inferior of these going from the anterior cerebellum was coagulated and divided, allowing for some gentle retraction of the cerebellum and good exposure of the Trigeminal nerve root from its root entry zone out to the porus trigeminus.



******

Significant neurovascular compression was identified, caused by a loop of the anterior inferior cerebellar artery tightly impinging on the lateral aspect of the root entry zone. I was able to mobilize this AICA loop anteriorly and hold it in a new position with a shredded felt implant placed between the artery and nerve.



Additional neurovascular compression was evident, with the superior aspect of the Trigeminal nerve root adherent and tightly apposed to a large vein, as well as an associated superior cerebellar artery. I was able to carefully lyse the adhesions between the vessels and nerve and mobilize the vessels more superiorly towards the tentorium cerebelli, while the Trigeminal nerve fell nicely away from the vessels after opening of the adhesions. Two shredded Teflon felt implants were placed between the vessel and nerve to maintain the decompression.



******

The dura was closed with 4-0 Nurolon suture and reinforced with surgical and Tisseel glue. Edges of bone were again sealed with wax. The bony opening was was filled with a cranioplasty of methyl methacrylate. A multilayer mayo cutaneous closure was completed and sterile dressing applied.



It should be noted that intraoperative monitoring was employed, with a maximum 0.6 millisecond delay of brainstorm auditory evoked latencies compared to early operative baseline. There were no injury potentials to from motor monitoring of the 5th and 7th cranial nerves.





My recovery issues make a lot more sense to me now after reading through this report.

Mimi

3

http://www.livingwithtn.org/forum/topics/4-months-post-op-mvd-update
My energy is finally starting to pick up!!
I’ve actually been able to walk for 20 minutes at a time now ( finally ) so this is super encouraging!
I keep using the mantra from the Tortoise and the Hare story, “slow and steady wins the race”.
I’m hoping to lose the extra 25lbs I put on this past year & 1/2 and being able to walk more than 10 min gives me hope at last that some aspects of my life may very well return to “normal”… That’s huge for me!
I was a very active person prior to this.

Most importantly I continue to have no TN pain.
I have occasionally felt the beginnings of TN pain which scares the *%#£ out of me!!! But thankfully it doesn’t amount to anything.
I hate how afraid I am when that happens… I understand my fear.
I don’t think I fully comprehended how traumatic the last 2 years were for me.
So the emotional stuff is still being worked through…

I’m so grateful for today.
Mimi xx

4

http://www.livingwithtn.org/forum/topics/speedbump-almost-5-mths-po…
Well, it will be 5 months soon since my MVD…I wish this was a happier update but I’ve hit a bit of a bump in the road…

Unfortunately 2 weeks ago my little “twinges” of pain started to increase …
Coincidently or not…at the same time I developed my 3rd tiny rash at the base of my healed incision. This time was different in that I felt pain inside my head just on my MVD side.
The other two times, there was no pain it felt just like an ingrown hair.
My doctor prescribed a stronger cream to treat the rash, and asked me to come back in a week.
In the meantime my TN pain worsened. After 3 days of nightmarish pain, having to pull out my trusted heating pad for the 1st time since surgery…
I decided to increase my Tegretol by one pill. This has reduced my TN pain but its not quite gone.

Not an easy decision to make. :frowning:

Back to the doctor yesterday and although the tiny rash looks better, the radiating pain caused my doctor to be concerned about possible shingles.
He said after surgical procedures and persons with low immunity this can occur.
So…he prescribed me a 7 day course of anti-virals (which are already causing me nausea, headaches and vomiting ) just in case.

Right now we’re not sure what is what. Has the TN pain returned/worsened? OR is it just aggravated by a secondary issue like shingles or something else entirely?

My MVD worked to reduce my med resistant pain, it did not take it 100% away but my day to day life is 100% better.
Before MVD I was in high levels of pain 24/7 on 3 meds and nothing touched the pain, rather it was escalating…after MVD I have had no pain, my pain has been managed with just Tegretol.

I personally don’t think it’s shingles, but I’m glad my doctor is being pro-active.
I was cursing him a little as I was up all night sick to my stomach.
He was very disappointed to hear of my pain returning…as we’re my husband and daughters… Ugh the look on their faces when they saw that heating pad…of course no one is more discouraged than I right now.

Hopefully having had the MVD the result should my pain worsen could be that at least it may respond well to the meds this time. My right side TN1 continues to remain quiet

I’m very grateful for the freedom from non stop pain the MVD provided me and I hope it continues…choosing to believe this is just a little speed bump.

Not going to be around much the next few days…due to feeling unwell.
(( hugs )) Mimi

5

This was my Nov. 2013 Update…

Thought I’d post an update on what’s been going on with me…



First, I just want to apologize I haven’t been participating much these past few weeks. I went into a bit of a “funk” I guess you could say. Just really frustrated, sad, angry, you name it and feeling a little lost.

In any event, I’m definitely in a better frame of mind . I think I just needed to go through the whole “woe is me” thing . It helps me to deal with all these emotions and feelings every once in awhile, allows me to re-group and move on ( until the next time, lol ) Such is life with a chronic condition…



Since I last wrote in September, my bad days have outnumbered my good ones.

I did try to add the Baclofen ( as my neuro suggested) to the existing dose of 1400mg Tegretol XR I’ve been on since August. Unfortunately this time around the Baclofen and I didn’t get along, so had to discontinue after 24hrs…

Neuro then recommended adding back the Dilantin, but I haven’t yet.



I do have a high pain threshold, and despite being a firm believer in not suffering needlessly, I’m wrestling with this decision to add back a second med.

In my mind it’s a step backwards AND more importantly by adding this med back into the mix it will limit my ability to function on my “good” days…and I’m not ready to give up that independence I only recently re-acquired.

Independance meaning being able to drive primarily.

Just by increasing the Tegretol over the summer I noticed my brain working slower again, it’s difficult to retrieve every day words while in conversation, I’m forgetful and even the short distances I do drive I’m on super alert concentration mode.

As you might understand, there’s a bit of a struggle going on inside of me and a reluctance to concede what to me are the very few things I can still do.

Ultimately the level and duration of the pain will decide.



The pain/bad days are still better than pre-MVD and for that I’m still so grateful.



My company’s long term disability insurance had me go for an assessment with a physiotherapist this week, I was hopeful that maybe this could help some…unfortunately the little bit of treadmill work I did set me off pain wise within 20 minutes from a 1/10 to a 4/10 with shocks and it gradually got worse throughout the day to a 9/10.

So very discouraging, I shouldn’t be surprised as any form of exercise this past year this has been the pattern for me. But my body misses and craves cardio that I let my hopes get high thinking maybe in this environment the result would be different…



In any event, on my good days I’m good and enjoy being able to do housework or pick up my kids from school/work, coffee with friends etc little pleasures I couldn’t do pre-MVD.

I don’t look too far ahead and try and focus on each day as it comes.

This month it will be two years since I had to stop working …back then I thought I’d only be missing a week…who knew . Makes me sad, I loved my job, and miss it. But life moves on and I’m fortunate to have long term disability through my work. Who knows, maybe one day I’ll be able to return.



In the meantime I still have HOPE for a brighter tomorrow.

Sheesh, I’m so long winded…if you made it this far, well thanks for reading my novel.

Hope this finds you all well, ((( hugs ))) Mimi xx

6

January 2014 (9 months post MVD)

I’m on 1400mg Tegretol XR, 270mg Dilantin and I have an rx for Keppra that I received from my neuro in December but haven’t started taking yet.
I’m hoping I don’t have too…I’m already dealing with enough side effects from the two meds, my neuro says with the addition of the Keppra these side effects will worsen…
So we wait and see…he left it to me as to when or if I should start it.

I was averaging one good day a week most of Nov. and Dec. but recently I’ve had 2-3 days in a row of minimal to no pain, such a blessing and a much needed break.
My pain is still better than pre-MVD, in that its not 24/7 I get breaks throughout the day except on the really bad days…
I haven’t been driving since November, ( which sucks) I’ve lost that independence again…sigh
Hate the unpredictable nature that is TN…hoping for a miracle in 2014…
Short update this time…
Mimi

7

Hi Mimi ! Its been 20 months since my MVD and I’ve been feeling pretty bad…I have burning and little shocks on my skull… I’m very depress and cry alot …I don’t want the hard pain to come back… I’m on 100 mg of fenitoin morning and midday and 75 mg of Lyrics at bedtime…I like u have good and bad days I’m like a prisoner not been able to go out or do anything …have 3 grandchildren that I want to enjoy and sometimes can’t …don’t know what to do or think…I’m very very sad…I know the stress and the sadness don’t help…snifffff…