It’s hard to know what to expect after a Microvascular Decompression (MVD.) Often, I see questions from patients in the first days, weeks, and months of their MVD recovery asking, “When the heck am I going to start to bounce back?” The prolonged fatigue that follows MVD can become worrisome when you were expecting to feel closer to normal by a certain date. When that date comes and you still feel like you’ve been steamrolled, your confidence in your recovery may begin to flag.
Here’s a sampling of questions posted in the support group:
– “I’m 11 weeks post op and just don’t feel I have the energy I should. Was this normal to anyone else?”
– “I am now six weeks post MVD. My pain is minimal to none. My concern is that I am still so tired. I don’t believe it’s ever taken me this long to feel like I had my energy back. I’m getting scared. I try to force myself to do things, but I have NO motivation or energy. I start a new job two weeks from today. Do you think I need to go to my regular doctor?”
– “Just a quick question if anyone can help. I’m 3 months post mvd and I’m so tired. I mean struggle to get out of bed and move tired. anyone else had this?”
– “I’m looking at some overripe bananas and thinking about how perfect it would be to make banana bread. But I just have no energy! And I love to bake. Anyone else still tired at the 5-6 week mark? I don’t know what to do.”
– “Four weeks in, I continue to be exhausted. It is obvious that my body really took a hit and that recovering from brain surgery is serious business.”
Take that last comment in. Read it once more. Recovery from brain surgery is hard work! Energy comes back for different people at different times based on a lot of factors, but the one thing that is true for every one is this: if you’re not “back to normal” yet, all it means is that you’re not back to normal yet. “Normal” is a word that has as many different meanings as there are people who use the word.
Let’s talk about something that we can actually define:
YOUR MVD recovery EXPECTATIONS
What are yours? Do you have a date by which you are expecting to feel close to 100% again? Is it realistic? Most likely if you are feeling like you should be further along, it’s because your expectations need adjusting, not your recovery speed.
The time it takes for your recovery to actually conclude will be different for everyone. Age, genetics, case complexity, overall health, physical fitness, surgical complications and side effects – they all play a role in your recovery. While the time to recovery conclusion is different for everyone, the actual recovery window is the same: 12-18 months for complete recovery. Make that your expectation and you will always be pleased with your progress. Don’t pigeon hole yourself into a 6-8 week recovery timeframe and stay miserable because you think you’re somehow failing. You truly deserve to be happy with whatever progress you make.
Other’s EXPECTATIONS of your MVD recovery
In some families and care groups there may be others who have a date by which they expect you to end your recovery and get back to whatever it is they need you to do. If others do have expectations, do they match up with reality? You shouldn’t have to conform your expectations of recovery to someone else’s timetable. Particularly if that someone doesn’t have your full recovery as their primary objective. Do the best you can before your surgery to make sure that those around you know that the recovery window following MVD is 12-18 months. Be firm about the need to “do recovery right” by taking care of yourself. After all, it’s brain surgery, folks, not tonsil removal. If there are people who just won’t accept that you’re not going to bounce back in 4 weeks, do your best to avoid confrontation, which may require a good amount of ignoring passive-aggressive remarks. Become a pro at it and guard your recovery.
Returning to Work
What about when to go back to work? Yes, I’ve read a few posts from people who successfully went back to work at 4 weeks post op. But I’ve read a lot more posts from people who expected to go back to work at 4 weeks post op, but are then wondering if that was such a great idea. When that happens, it’s not time to push yourself to do something you aren’t ready for, thereby putting your full recovery in peril. Once again, it’s time to adjust expectations. Take as much time off of work as your employer will allow, with a bare minimum of 6 weeks from a full time job. When it’s time to go back, if you can go part time instead of jumping into full time weeks, do that. Your job, except under a few special circumstances, is protected by the Family Medical Leave Act of 1992. Let your employer know how much time you will need off for recovery and make sure that it is explicitly stated that you are taking off time which is protected by FMLA. Then leave that work at your workplace, and focus on the real work of getting better.
The Recovery Rollercoaster
During your recovery, you will have days in those early weeks that feel like you might just have it licked. An example from our group posts:
– “I am five days out of surgery and feeling the best I have yet. I have the most energy. I’ve had the least of my pain. I’m just feeling like I’m on the upside of this and it is fabulous.”
Then, a few weeks later, you’ll feel like you have gone in reverse. An example:
– “Post op day 10. So weird. I felt horrible the first few days with neck and headache pain. Those improved and I felt pretty good for about 2 days. Now, going downhill. Exhausted, incision pain and weak. So odd.”
Someone said it here, there is no recovery that doesn’t at least once feel like you never had the MVD. Do not despair. Chalk it up to the recovery rollercoaster and shoot for a better day tomorrow.
Normal or “New Normal?”
Some of us have had post-surgical complications or side effects that have thrown a wrench in our recoveries. To be more precise, it threw a wrench in our recovery expectations. I will likely not ever get back to normal, if by normal you mean the way I was before I was hit with TN and GN. It was fairly soon after surgery that I adjusted that expectation. I grieved the higher expectation that I had held for my recovery, and slowly accepted the “new normal.” That is recovery too. It doesn’t always end in a patient being a fully restored, factory refurb. Be aware that it might become necessary for you to accept a different outcome as the conclusion of your recovery.
Slow MVD Recovery Concerns?
A slow recovery is not something to worry about. There’s nothing wrong with you if someone else got to “normal” quicker. If it takes months to get your head of steam up again, just let it happen that way. You’re not in any danger from a slow recovery, and you’re not doing it all wrong. (So long as there isn’t anything else going on like illness or infection, and those are serious concerns. Be sure to rule them out.)
Ways to help yourself
- Make yourself a daily routine. Do something every day, even if it’s just making the bed. The ritual will give you a sense of control and will guarantee that you have at least one thing “done” at the end of the day.
- Build up slowly. Give yourself time to adjust to whatever new daily ritual you have added before you add another one. Is today the day you add “do a load of laundry” to your daily routine? Then add it and nothing else for at least a few days.
- Eat healthy foods that nourish your body. This is essential. If you don’t have the energy to cook yet, have family or friends cook for you. Consider nutritional shakes when a meal is too difficult. Whatever you do, eat something.
- Take supplements that encourage nerve healing. Magnesium glycinate, B12 (in the form of methylcobalamine,) and turmeric are all things that I have heard people report successes with. Find your own formula and use it. And make your doctor aware of it.
- Rest a lot, but move around too. Becoming completely sedentary is not conducive to good recovery. If you have been lounging for a couple of hours, get up and walk around the house. Step outside and get some air. Take the dog for a walk if you’re up for that. Just do something to break up your rest periods with very light activity. Tip: set your smart phone to remind you to move a little every 1-2 hours.
- When the temptation comes along to think that your recovery isn’t moving fast enough, resist believing it! Your body knows what it needs. Give it what it’s asking for and adjust your expectations!
Ultimately you will recover, and it will be at your own pace. Embrace your pace!
Essay author Erika Conrad is a veteran of 28 years of chronic facial pain. In addition to having had two MVD surgeries herself, Erika is the founder and admin of a 1,000+ member online support group for MVD patients.