Thursday, January 14, 2016

6 months post op

Well, hello. I intended on writing more in depth about my experience with my MVD surgery. I even started a post in August. But, here we are. I am 6 months post op next week. I guess I will just give an update on where things stand now, although I feel like it's such an incomplete picture because the recovery has been such a journey. But I guess it's better than nothing? Right?

So, here we go. I'll list each thing separately and just give kind of a status report of how that aspect is right now, maybe as compared to what it was before.

Trigeminal Neuralgia
1. Type 2 TN (constant aching) - I no longer have constant aching pain in my face. Sometimes I get a similar kind of pain but it doesn't last very long. For this pain I was only given a 50% chance of a 50% reduction in pain so this is pretty amazing!!

2. Type 1 TN (jabs and stabs) - I still get jabs and stabs of a similar nature to what I had before. Probably every day. Perhaps a little less severe. For this type of pain I was given an 80% chance of complete relief. I was told at my 4 month follow up that I could just be in the 10% that get some relief but not total relief. Only time will tell. My neurosurgeon said we need to wait the full 12-18 months recovery time to know. It could continue to improve, or this might be all I get. Right now, it's still pretty wonderful to be in that 10% (the other 10% don't get any relief at all from surgery).

Geniculate Neuralgia
3. This is the deep ear pain I was having, that also kind of encompassed both types of pain - deep aching as well as stabs of pain deep in my ear. And the pain has followed a similar recovery pattern. I still get some occasional jabs and stabs but I don't get the kind of constant aching that I was having before.

4. Migraine - this is the miracle part. This surgery was not expected to have any affect at all on my migraines. My migraines were usually on the opposite side of my head from the TN side we operating on, and he said that physically speaking, they are not related. But my migraines are significantly improved!! At least so far in my recovery (and not including the obvious surgery side effect of terrible head pain for the first few months), I have gone from 20+ migraine days a month down to about 4. I'm not positive on the number now because I don't even keep track. I still have them, and they hit me and I think, oh yeah I remember this awfulness. But then, the next day it is usually gone and/or I can take medication and it usually takes care of it! Like normal people migraines! It's amazing!!

5. Eye pain - it was never really clear whether my eye pain was related to the migraines or the TN, but it has improved a lot. I still get some of it, but not as severe or for as long.

Surgery Side Effects
6. facial Numbness (from messing with the trigeminal nerve to move the compressions) - on my face I have partial loss of sensation across my cheek, eyebrow and nostril and in my mouth, my front teeth on the left as well as the left side of the roof of my mouth. I usually don't notice it much. After the surgery and for the first couple months I had no sensation or taste on the entire left side of my mouth, including my top lip, and that was very annoying. But I was very much relieved when most of that sensation (and taste!!!) returned. It is possible this could continue to improve as well for the 12-18 month recovery time period. Just have to wait and see.

7. Head numbness (from cutting the nerves in my scalp to access the surgical site) - So, at first my entire head was numb. All of it. Both sides (I don't even know why). Then over the first few months of recovery, the sensation on the right side returned (with a progression from weird tingly and hypersensitivity gradually back to normal), then the top of my head, then the back of my head, and finally the top part of the my left side. I am left with numbness mostly just in a section of my head behind my ear (by the incision) and the top half of my ear (weird).  My surgeon says it is likely that this numbness is permanent. Only time will tell, but it's probably not going to come back. Not a big deal, really. I usually only notice it when I get my haircut or someone else is touching my head, or anytime I pull a hat down over my ears I am reminded that I can't feel most of my ear.

8. Surgical site/incision pain - This is actually probably the most painful thing I still deal with and that's probably because it's the most persistent. I still have a lot of aching and tightness. Feels sort of like someone is grabbing a section of hair right at the incision line and is yanking it really hard, pretty much constantly. I do still also get some stabs of pain extending from the top of the incision line up my head and also burning heat sensations. Those are getting better, less frequent. Oh and when I raise my eyebrows I can feel it pulling my scalp at the incision. Anyway, I forgot to ask about the incision pain at my follow up, but I assume that this usually keeps getting better over time. We shall see!!

9. And as a note of interest - my hair has filled in the incision line pretty much completely. I can't even move my hair over to see it, it's all grown in. This is both positive and negative. It's just weird to have a major scar like that and something that I can feel all the time (because it aches and pulls) but no one else can see it. I no longer have my visible battle scar! The only way anyone would know (unless I told them) would be an xray or other scan of my head, because I have acrylic bone cement filling in the hole they drilled out. I'm not positive but I think it's about the size of a half dollar. Anyway, I was surprised my hair grew back right over the scar line. My hair also grew back over the spots that were bald for awhile from the metal halo stabilizing frame that they screw your head into for the surgery. So that's good.;)

10. Other side effects that were more short lasting - I lost my voice for about 2 weeks post op ( from working on the vagus nerve, I believe). I was dizzy and off balance for probably a couple months. I think I started driving again at about 10 weeks post op. I can't even remember what else.

11. Other side TN - I don't mention this very often, because it just feels too complicated to mention, but I have also started to develop some TN and GN on my other side as well. It's been a couple years since that started. But right now it is still less severe than even what I am left with from my surgical side so I am nowhere close to being ready to decide to do surgery on that side, although if it were to worsen that is an option I have discussed with my surgeon.

12. The only activity restrictions I have now are: no jumping on trampolines and no roller coasters and rides until the 1 Year mark. And I should be careful to protect my head with other things where hitting my head is a possibility. So I'll probably skip out on things where falling and hitting my head are possibilities for a while yet, especially if not wearing a helmet (roller skating, sledding, stuff like that). There's the bone cement that could possibly be dislodged, as well as the padding between the nerves that could be shifted out of position, as well as just needing to let the brain and cranial nerves heal from the trauma of surgery. I don't think I want to risk any of that.

So! That's where I'm at. Given all of this, maybe you can see why it's kind of complicated to answer if "my pain is better" - haha.  But I am doing better, all things considered. I feel like I am a human again and not just a zombie. I am sleeping at night. I can exercise. I am off all of my medications (except my migraine abortive that I can take as needed). I would have to write another whole blog post to talk about the emotional aspect of this surgery and recovery so I guess I will leave it at that for now. A MILLION THANKS TO EVERYONE THAT HAS SUPPORTED ME!!!!  Really. I just don't have the words to thank everyone that contributed financially, sent me comfort and support, listened to me vent and complain (mostly on fb), and perhaps more than anything, just not giving up on me. Sometimes, all you can do is sit and wait through the storm. Sometimes the storm never even ends in this life. Thanks for braving this storm with me.


Anonymous said...

I just wanted to thank you for writing this ...we are so close in our recovery and I can relate to about 90 percent of it . I do not have any numbness and I feel nothing on the incisional site .My pain going in was about equal on both sides and I have very little pain on the non surgery side now too which is really weird . What really suprises me as well is that like you I don't have the constant pain anymore like I had before surgery which is opposite of what I was to expect, but so grateful that is how it ended up . Again thanks so much and I pray we both continue to improve

Anonymous said...

I too want to thank you for your blog. I saw Dr Linskey in January 2016 and he said my MRI showed I was a candidate for MVD with possible venous and arterial compression of my nerve. This, after trying umpteen awful drugs and suffering since 2011, in part because Dr Burchiel at OHSU in Portland said that surgery was not an option for atypical facial neuralgia or TN2. I elected to have my surgery done closer to home, in Seattle WA--the logistics of LA seemed too daunting. Your descriptions of the various complicated answer to 'how are you doing since the surgery?' are very similar to mine. Some trade-offs and issues I hope will resolve over time, but mostly enough improvement that I am very glad to have done the surgery. One of the best things is to have rediscovered what real sleep is and how much it improves every aspect of my life, including dealing with residual facial pain. Yay!!!

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