Experiences with scalp numbness and recovery?

[Alyssa M.]

I've been looking for people to share experiences around nerve regrowth following FFS. I found some people talking about numbness, and plenty of discussion of scarring, and it seems *everyone* talks about swelling, but almost nothing how the recovery goes (or lack thereof) after cutting the supraorbital nerve (for a hairline advance or adjustment or in general for any forehead work that doesn't use the Zukowski approach).

So if you had a hairline incision, how was the healing? How long was it itchy? Was there lots of pain? When did feeling first start to come back? Did it gradually come back across the scalp, or just all at once, or gradually over the whole area? I'm not quite sure how it works, whether nerves grow back to interact with existing neurons and neural networks, or if everything has to be completely "rewired".

Basically, I want to know what to expect and what I might have to be worried about. Here is my experience so far:

At first, I barely cared because of other issues with pain. I could tell that there was numbness, but there was so much else going on that it didn't really register.

Now after four weeks, there's close to no pain left from the surgery (just some from swelling in my chin), and the incision is just about completely healed, but I'm getting itchiness and weird shooting sensations across my scalp. It's numb, but I can feel it in the nerves anyway. I'm actually able to "scratch" when it itches by lightly massaging my forehead just below the incision. At some point I come across the damaged end of the nerve and it's like the whole top of my head is buzzing. I'm not sure I really should be doing that. But so far, I don't thing there's anywhere that I lost feeling and have regained. Nothing about it is too uncomfortable, but it's a little unpleasant, and it would be nice to have feeling there again.

Other than that, I'm very happy with the surgery.

[deeiche]

When the Yahoo FFS group flourished there was lots of discussion re: numbness following surgery.  People used to post for months if not years on their followup.  Here, most people seem to disappear post surgery.  There are a few who do, but it is a small group of the same people.

YMMV, I had coronal incision Sept 2015, still have surface numbness on the top of my head, on either side of incision.  I have come to be very careful around over hanging objects.  If I run into to something I find I don't notice it unless I've really hit it.  I don't notice it if I just brush against it, but realize it happens because my hair ends up in my eyes.  My forehead was initially numb but I've recovered most feeling there, except close to hairline.

Also, I had sliding genioplasty.  My chin has some numbness, but no where else along the jaw.  I did not realize how numb my chin was still until I started 5FU topical treatment on my face 13 days ago.  Because I have to apply 5FU twice a day I've thoroughly touched my face more in the last two weeks than ever before.  I don't wear makeup, so I never realized how numb my chin really was.  My lips were initially numb, but feeling recovered within a couple weeks of surgery.

As an aside the numbness I still have has had a beneficial effect.  My face is really on fire from 5FU, so I'll take what ever help I get in this area.   

I hope this helps.

[Rachel]

I had FFS 7 weeks ago. I had upper lip reduction and my upper lip has 90% feeling. I had mandible and chin work and the top of the skin has feeling but my gums and under my skin on the mandible and chin have a numb feeling. The fat injections are fine, lower and mid face lift is fine. The blethoplasty is fine. The orbital rims and type 3 forehead is fine. The top of my head to the incision is numb. I had forehead advancement and I gained feeling on the sides and back 50%.

[Debra]

Great topic!

Yeah I just had FFS a week ago. The cast came off yesterday. Numbness right now is front forehead up to just over halfway past the top of my head...and of course some parts of the nose too.

Dr D says from the get-go that numbness can go on for at minimum a year. I liked that he was up front about it at least. It's not as weird as I thought it would be (or as much) but here's hopingit heals up.

The nerves reconnecting tends to give that 'spark' the OP was talking about....though unpleasant, it's definitely a good sign.

[Sophia Sage]

It took about 2 years for most of the numbness to go away.  It's about 80% sensate compared to pre-surgery. 

[2cherry]

Great topic!

Yeah I just had FFS a week ago. The cast came off yesterday. Numbness right now is front forehead up to just over halfway past the top of my head...and of course some parts of the nose too.

Dr D says from the get-go that numbness can go on for at minimum a year. I liked that he was up front about it at least. It's not as weird as I thought it would be (or as much) but here's hopingit heals up.

The nerves reconnecting tends to give that 'spark' the OP was talking about....though unpleasant, it's definitely a good sign.

I'm in my 4th day post op....

It feels numb... my whole forehead feels like I am touching someone's else face... but, just a moment ago I had some electrical shocks in my forehead. The muscle between my brows is working again.

Apparently, my doc said, it is very hard to destroy this area. This is because even when you cut brow muscles, they simply regrow. The body is very strong, and will regenerate this area. But it does take time. Oh well....

[Alyssa M.]

Sophia Sage — can you comment on what it felt like as the feeling returned? Did it kind of grow back from the edges of the numb area, like from the incision on back, or did the whole area gain feeling all together more or less at the same time? Did it ramp up slowly over many months or longer, or did it mostly come back in a short period (like two months or less)? And when did you start to feel any feeling at all? Was there discomfort as it returned (pain, sensitivity, whatever), or did it feel mostly normal?

[Sophia Sage]

Sophia Sage — can you comment on what it felt like as the feeling returned? Did it kind of grow back from the edges of the numb area, like from the incision on back, or did the whole area gain feeling all together more or less at the same time? Did it ramp up slowly over many months or longer, or did it mostly come back in a short period (like two months or less)? And when did you start to feel any feeling at all? Was there discomfort as it returned (pain, sensitivity, whatever), or did it feel mostly normal?

Well, there were the occasional shooting sensations, as you've mentioned.  Mostly, though, it was a very slow and gradual return of partial sensation across the whole area. 

I'm trying to remember the timeline, it was so long ago... I had the hairline incision revised, actually, so it all went numb again at six months after the initial surgery.  And it stayed numb for like six months (or a year?) and then in the following year it slowly became more sensate... like, maybe 50% after two years.  And then gaining 10% a year for three years after that. 

Kind of?

I do think there was more sensation returning before the revision, now that I think of it. 

Every now and then I'd really clobber the top of my head on something, like ducking under a low doorframe, or just getting into my car, and I'd appreciate the numbness, kind of.  Ooh, one time my head was blocked by a low hanging tree limb, and I didn't even realize it. 

Good times.

[anjaq]

This sounds a bit scary - so far it reads like everyone gets numbness but in some cases some of the feeling returns, but one basically has to accept numb sports or spots of reduced sensation as the price for FFS?

[Sophia Sage]

This sounds a bit scary - so far it reads like everyone gets numbness but in some cases some of the feeling returns, but one basically has to accept numb sports or spots of reduced sensation as the price for FFS?

On the very top of your head, yes. 

[Debra]

This sounds a bit scary - so far it reads like everyone gets numbness but in some cases some of the feeling returns, but one basically has to accept numb sports or spots of reduced sensation as the price for FFS?

Yeah. I know a lady who had her FFS like 10+ years ago and she says even today she has limited/weird sensation on top of her head and even some of her forehead.

[Michelle_P]

There are lots of nerve networks in the face and scalp that extend from the cranial nerves, sort of like the branches of a tree.  If one of those tiny things is damaged in surgery, some numbness can result.  They often don't fully recover, alas.

I've got a large area on my left cheek that is numb, courtesy of a cancer surgery.  I look slightly lopsided because of this, combined with a drooping eyelid and brow on the opposite side.  I'm hoping eventual FFS can rebalance this. (Please?)

[anjaq]

I think it is very confusing that this sort of thing is so rarely mentioned. We all see the great pictures and people telling everyone how happy they are and if we hear something about numb spots , everyone says it will eventually heal - but I get the picture that it rarely healls really great - and more often it comes back only to a fraction of what it was before, but people are all willing to pay that price for the effect of FFS. I tried to ask about this some times but usuall people get mad at me for even asking a bit more because then they get scared of FFS themselves but at the same time they so desparately want it.

[Maybebaby56]

I am two months post-op as of today.  While I am now mostly pain-free, I still struggle with numbness, shooting pains, weird sensations, as well as the swelling and discomfort arising from tender post-operative sites. Recovery has been slow and dearly paid. FFS is major surgery, and while it can give great results, it is not a walk in the park. I tried to convey that sentiment in this thread : https://www.susans.org/forums/index.php/topic,215448.0.html.  As you said, Anjaq, I think it is a message many people would rather not hear.

I think I got great results, but my goodness it has been a hard road.

With kindness,

Terri

[Sophia Sage]

I think it is very confusing that this sort of thing is so rarely mentioned. We all see the great pictures and people telling everyone how happy they are and if we hear something about numb spots, everyone says it will eventually heal - but I get the picture that it rarely healls really great - and more often it comes back only to a fraction of what it was before, but people are all willing to pay that price for the effect of FFS. I tried to ask about this some times but usuall people get mad at me for even asking a bit more because then they get scared of FFS themselves but at the same time they so desparately want it.

Well, to be frank, it really wasn't a big deal to have a small patch of numbness on the top of my head -- extending from the crown to the hairline.  I mean, it's just not that important in the big picture; it's not like it hurts.  And, again, after a few years most of the sensation returned -- hardly a fraction.  But honestly, I would have traded permanent numbness up there for my results. 

[Debra]

I think it is very confusing that this sort of thing is so rarely mentioned. We all see the great pictures and people telling everyone how happy they are and if we hear something about numb spots , everyone says it will eventually heal - but I get the picture that it rarely healls really great - and more often it comes back only to a fraction of what it was before, but people are all willing to pay that price for the effect of FFS. I tried to ask about this some times but usuall people get mad at me for even asking a bit more because then they get scared of FFS themselves but at the same time they so desparately want it.

I think this is why i waited 7 years to have FFS. And then I only did minimal (upper face only) work. Still hoping to beat the odds of course but there's only so much that can be done, recovering from such an invasive surgery.

[anjaq]

Well, to be frank, it really wasn't a big deal to have a small patch of numbness on the top of my head -- extending from the crown to the hairline.  I mean, it's just not that important in the big picture; it's not like it hurts.  And, again, after a few years most of the sensation returned -- hardly a fraction.  But honestly, I would have traded permanent numbness up there for my results.

Well - I get the impression for some it is more and for some less that is coming back - some have 100% numb spots but they became smaller with time, others have a recovery in all the area but only to some degree.

Yet still, this is what I mean - for most of the patients it is "worth it", its "not a big deal", so they do not even mention it to others because it does not bother them so much and because they would have traded much more than this little discomfort for what they gained with FFS - for many it is the difference between seen as male or trans and be seen as female, so whats a bit of numbness in comparison. Still I find it a bit unfair to not mention it at all, as many seem to do. Because one should always have as many facts about a procedure as possible, I looked into FFS for a while and it took mayn months until I found out that there are some with permanent numbness and then many more months until I found out that it is actually a pretty common occurence to loose at least part of the sensation permanently. Before that, people always gave the impression it is only a temporary thing.

I am not sure, I would have looked so much into FFS if I had known this from the start.

[Debra]

I hear you anjaq. Unfortunately there is no central place for FFS experiences and reviews. In fact, this is as central of a place as any and they're talking about it here. Otherwise it means hunting down girls who may not even want to be found let alone talk about their experiences. And of course any reviews the surgeon puts on their site are going to be very positive.

I appreciated that my surgeon said from the get-go I'll have numbness. Of course they all try to play it down heh.

[missy1992]

I had full FFS in 2013, early in the year.

I would say that 90% of the feeling has come back. I do not have any numb spots but some parts of my head definitely feel weird.

ymmv.

[Alyssa M.]

Sophia Sage — thank you so much for your response! And others too, I haven't read through all the replies yet.

One of the areas of confusion (here and elsewhere) is that people talk about different areas and kinds of numbness and other kinds of nerve damage as though they are the same, and they really are not, IMO.

I had contouring on my chin and jaw via incisions inside my mouth. The healing is a little weird, but there's essentially no numbness whatsoever. What numbness there is (a small area from my chin about an inch up toward my lower lip) results from the swelling, and it's not an issue. It gets better day by day, and there is feeling, just not quite 100% normal just yet. Obviously any surgery can lead to more serious nerve damage which can cause numbness, but that's I believe an unintended and somewhat abnormal complication for most procedures that don't involve a hairline incision, and the recovery from it is probably different, since we're talking about probably much smaller regions and probably not fully severed major nerves.

I also has a scalp advance in conjunction with "type-3" brow/forehead reconstruction. (That term was never used in any consultation, but you hear it around. Basically, I have titanium screws and plates in my forehead, which are completely unnoticeable.) People are talking about numbness in the forehead associated with that kind of surgery, of which I experienced none whatsoever. Zero. I could feel my forehead coming out of surgery, and the only thing that felt different was that there were some pulled muscles. (Like, literally pulled by the surgeons.) I don't understand how this procedure should, under normal circumstances, result in any numbness in that region, based on how the nerves work.

The issue I'm talking about is behind the hairline incision, about two inches on either side and stretching back four or five inches. It's obvious what the issue is when you see a diagram of the cranial sensory nerves:



Basically the nerves are cut along the hairline, and everything in green behind that doesn't work. From
Dr. Ousterhout's book:

Temporary numbness occurs with scalp advancement surgery because two sensory nerves, the supraorbital nerves, are unavoidably cut during the procedure. Patients will almost always experience a short-term loss of sensation in a fist-size area atop the head. Although 1 to 2 percent of these individuals may never regain their full sensation (similar to accidents and major surgery), the majority—the remaining 98 percent—will recoup normal to near normal feeling in six to nine months.

Obviously if you got an incision farther back (like what I hear regarding Facial Team) or endoscopically (Zukowski), you will not have this issue, even if perhaps you experience other complications. I had my own reasons for not choosing those approaches, but if the numbness is a major concern, they're maybe an option to consider more seriously.

Nerve regeneration absolutely happens — like, doctors reattach severed fingers and toes and worse, and nerves slowly grow back. The figure I heard is that they grow back at 1mm per year, but I don't really understand how that works -- like, do they grow out from the spine, or do neurons on both sides of the suture join together, or what? I'm not a neuroscientist or neurosurgeon, so I can't really answer. I have experienced numbness (in my big toes due to a lot of hiking in stiff hiking boots) that eventually resolved, so I know it can happen for me. But that was partial and a smaller area, so I don't know how it goes for a larger area like I'm experiencing now.

I do think it's unfortunate that this all isn't more clearly discussed, which is why I brought it up. There was a thread I found in the yahoo group archives (I think just titled "numbness") that had more personal stories, but it doesn't seem like it gets the attention it deserves. I am encouraged to hear people talking about how and when it comes back, and not just taking the word of the doctors who say it "usually" does, and the part I'm really missing is what it feels like as it starts to come back, what the recovery curve looks like, etc.

So thanks again for the responses!