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Experiences with scalp numbness and recovery?

Started by Alyssa M., November 08, 2016, 06:12:56 PM

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Alyssa M.

To be really frank, the unfortunate part isn't that it's numb nor that the nerves produce weird sensations — that's really unnoticeable most of the time. The time it really hit me as a loss was, as I was getting better sometime last week and starting to let my hair down, my girlfriend ran her fingers through my hair over the top of my head, which is something that feels really nice and intimate, and I just couldn't feel it.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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anjaq

QuoteAlthough 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.

From what I read, this is more along the lines of

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

The real numbers seem to be very different. I have heard very few who say it has recovered completely, the majority says there is some changed sensation and a bigger than 1% minority says that they have totally numb sports - not huge spots like the whole forehead or the whole top of the head, but something like an inch strip behind the hairline, a coin sized spot on the head or below the lip or at the chin - something like that seems to be much more common than 1-2%.

I lost all my sensation in the breasts during breast augmentation - they also said this - its just a 1% chance that something will not come back and it just takes time and it will always recover partially - well, that was 15 years ago. I am not buying this anymore.

QuoteObviously 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.
This is actually why this approach would be the only one I even consider.

Quote from: Alyssa M. on November 16, 2016, 12:09:25 AM
To be really frank, the unfortunate part isn't that it's numb nor that the nerves produce weird sensations — that's really unnoticeable most of the time. The time it really hit me as a loss was, as I was getting better sometime last week and starting to let my hair down, my girlfriend ran her fingers through my hair over the top of my head, which is something that feels really nice and intimate, and I just couldn't feel it.

Well, but that is what I was thinking about? No doubt the numbness is not present in your thinking all the time - I do not always feel that I do not feel my breasts consciously, but I could curse myself for having had that BA done when I am with someone who does things that most other women would find great and I just feel nothing. Its not a functional loss if sensational nerves in those areas are damaged - thats a different category, which also can happen, but that is rare (in that case it can be that a lip is drooping or an eyelid is lower than the other). But it is more that loss of the sensation that you have when touching yourself or someone else touches you.

I think often we are very focussed on how other will perceive us or how we will visually see ourselves in the mirror and this defeinitely improves with these surgeries, but I also consider touch and feeling to be important and this is why chances are that I will drop the idea of getting FFS, actually :(

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Sophia Sage

Quote from: anjaq on November 16, 2016, 08:36:50 AMThis is actually why this approach would be the only one I even consider.

If you want a scalp advancement, that approach won't cut it.  However, that wouldn't be a concern if you went with hair transplants.


QuoteI think often we are very focussed on how other will perceive us or how we will visually see ourselves in the mirror and this defeinitely improves with these surgeries, but I also consider touch and feeling to be important and this is why chances are that I will drop the idea of getting FFS, actually :(

Considering the very bad luck you've had in this respect, yeah, this makes a lot of sense.
What you look forward to has already come, but you do not recognize it.
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Alyssa M.

I definitely don't mean to just blindly accept everything Ousterhout said there. The 1-2% figure definitely seems low, but I appreciate the clarity explaining how numbness occurs with a scalp advance, and how healing can occur. On the other hand, I think internet forums and other platforms are prone to an overemphasis on bad outcomes. I mean, just look at Yelp reviews. So we're left with a lot of uncertainty, just as with everything else in transition-related medicine.  :-\

My surgeon was also very up front about the numbness, but I would have appreciated more explanation of exactly what that meant, as well as the other feelings like shooting sensations and itchiness, and how it might or might not get better, like how it would feel and what's happening medically, not just the chances that it would. It's the main thing that threw me for a loop with the surgery, the other thing being the way the insides of my cheeks and lower lip swelled up around the incisions for the jaw and chin work, not a feeling that I ever expected.

And yes, I consider the loss quite real, and something I wanted to share because it's also not something I really thought about, and it really does make me sad. I too consider it an under-recognized risk.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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Debra

Quote from: anjaq on November 16, 2016, 08:36:50 AM
I lost all my sensation in the breasts during breast augmentation - they also said this - its just a 1% chance that something will not come back and it just takes time and it will always recover partially - well, that was 15 years ago. I am not buying this anymore.

Sorry to hear that. I had great results with BA with no numbness/loss of sensation. Every surgery has its risks. It is unfortunate (as I said before) how easily the surgeons play down the possibilities sometimes.....and their timing for recovery is often wayyyy under-estimated from my experience.

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anjaq

Well, with the BA, it was a risk - it was bad luck and bad skill of the surgeon. With FFs it seems the risks are much higher or maybe it is more like an inevitability that there is initial numbness and that it will not recover 100%, but more a matter of degree of how much will return with good healing.

Quote from: Sophia Sage on November 16, 2016, 10:17:59 AM
If you want a scalp advancement, that approach won't cut it.  However, that wouldn't be a concern if you went with hair transplants.
I do not need much scalp advance - I just would need my corners filled in with transplants. This is something I probably am going to do in any case - FFS or not.


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Alyssa M.

I don't think it's inevitable. Despite the invasive nature of the forehead surgery, other than the scalp where those two nerves are cut, I have experience no changes I could really describe as numbness, just the tenderness that goes along with swelling that alters feeling a little. With the Zukowski endoscopic approach that preserves those two nerves, I don't see any reason there should be numbness at all.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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anjaq

Well, that is what I meant with inevitablility - those nerves on the scalp are cut - if they grow back or not is something that would require luck and favourable conditions. the other numbness occuring seems more to be something that happens or not - I guess depending on luck and skill of the surgeon. If one has a lot of swelling or weird pathways for the nerves, it may happen more easily. But it is not inevitable, unlike that part on the scalp. However I believe some numbness on the scalp is easier to bear than if it happens on the chin or lip...

Alyssa, did you have the  endoscopic surgery? I am interested if it really reduces greatly the risk of having numb spots - the swelling produced by that method seems to be enourmous though, I saw some videos and pictures - it seems not to be that minimal invasive in that respect.

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Alyssa M.

No, I had the standard "type three" procedure with the scalp advance/reshaping using an incision at the hairline and resetting the orbital rim with plates and screws, along with mandible contouring at the chin and back of the jaw via incisions behind the lower lip.

I agree that the scalp numbness is not as bad as numbness on my actual face would be, and I'm glad I didn't experience any of that, except the tenderness in my chin associated with the swelling, which is taking a long time (as expected) to resolve.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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2cherry

In Dr. Ousterhout's book, I read that 1 to 2% of his patients experienced permanent numbness. As always, the 1% bad results are plastered everywhere on the Internet. Because who wants to report a issue that never happened?

Similar like that guy in the hospital next to me: he read a dozen anecdotes about catheter removal and "extreme pain". So he worked himself up into fear. When it eventually happened, he said: "that was it?"... of the millions of catheter removals, only a few percent report extreme results.

FFS has risks. It's not something minor. You could even die. In fact, anesthesia is a kind of temporary brain stem coma/death.



1977: Born.
2009: HRT
2012: RLE
2014: SRS
2016: FFS
2017: rejoicing

focus on the positive, focus on solutions.
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anjaq

Well, I wish it would be so - that the 1-2% figure is real or that it is even less than that - but for that to be true, there are way too many reports about this on the net. But of course - if one takes it as the worst case - complete and permanent numbness of the whole area, that is probably very rare - almost all have regained some sensation - either most of the area or much of the sensation in the whole area - but the reports about people having some residual permanent numb spots or maybe a 20 or 50 or 70% loss of sensation compared to pre OP - or just a changed sensation - maybe even hypersensation. Things will probably be just different post OP, for 99.9% this is not an issue as the spots are small enough to be ignored or simply because the tradeoff is totally worth it. I would probably trade a numb spot on the scalp anytime if the alternative is to not be seen as a woman daily. Whats a bit of numbness compared to daily misgendering...

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deeiche

Quote from: anjaq on November 19, 2016, 08:07:00 AM
Well, I wish it would be so - that the 1-2% figure is real or that it is even less than that - but for that to be true, there are way too many reports about this on the net.
SNIP
I bet we only see 5% of the people who get FFS comment anywhere on the net.  Think of all the surgeons doing FFS, most seem to do at least 1 a week, if not more.  We don't see thousands of FFS patients posting annually, no where near that.
"It's only money, not life or death"
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anjaq

Sure - we only see a fraction. I see most of them are extremely happy with havong had FFS - only very few are not. What I found interesting though is, that those who are happy do not talk about numbness until asked about it directly. Very few openly complain about it or report it freely - But almost everyone I have contacted to get real experiences about FFS told me about numb spots or changed sensation - they usually play it down - its just a coin sized spot somewhere or a half inch stripe behind the incision or it is not numb but just feel weird... nothing really important - not compared to finally "passing"... so at first I thought the risk of this is minimal and I considered FFS, but the more people I contact the more of these experiences I read and the more unsure I get :( - I do not need FFS to pass, so that big positive that compensates these little issues is not going to happen with me.

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Sophia Sage

Quote from: anjaq on November 19, 2016, 08:29:41 AMI do not need FFS to pass, so that big positive that compensates these little issues is not going to happen with me.

In the meantime, have you done anything to try and exorcise the ghost?

Letting go isn't easy, is it?
What you look forward to has already come, but you do not recognize it.
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Debra

Quote from: anjaq on November 19, 2016, 08:29:41 AM
I do not need FFS to pass, so that big positive that compensates these little issues is not going to happen with me.

I didn't either.....was just hoping for 'icing on the cake'....and I'm pretty happy with the results.

One thing to take into account on these boards and this forum esp is that a good portion of us have just gone through it. I can't speak to the numbness much until a few yrs go by heh.

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anjaq

Yes certainly it is sad that often the people drop out before hearing long term results. This goes for FFS, voice surgery, GRS ...

The ghosts - I kind of have other things on my mind now - I need a breast surgery next year because my implant is having a fibrosis. So this is first, after that I may try hormone injections and maybe then I do not feel like FFS anymore...

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Alyssa M.

Okay, bumping this to update, and probably will a few times again over the next year to log my experiences.

It's coming up on three months now, and the whole numbness experience is pretty okay overall, but, well, yeah, still numb. However, I'm starting to be able to feel just a little bit. If I tap gently, I can sort of feel in the skin on my scalp where I'm tapping, and it kind of tickles. If I poke myself with my fingernail in a manner that would hurt elsewhere on my scalp, I basically feel nothing. But the feeling I get with the taps is encouraging that maybe it will come back.

There's no specific area that I can feel more or less. It's all just uniformly numb, except that when I tap near the edges of the numb area, it causes a slightly sore feeling rather than the tickle I feel when I tap more toward the middle.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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warlockmaker

I had a brow shave and a lowering of the hairline on Jan 20th this year. I was familiar with numbness as I had a facelift some 10 years ago. I expected numbness in the scalp and yes it was there. No real discomfort just numbness and as the nerves reconnected it itched alot. I regained all sensation after 6 months. Never had pain from my facial surgeries.
When we first start our journey the perception and moral values all dramatically change in wonderment. As we evolve further it all becomes normal again but the journey has changed us forever.

SRS January 21st,  2558 (Buddhist calander), 2015
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Debra

everyone how is forehead numbness? I'm just over 1 month postop now and wondering about that. I have weird patches in teh forehead that I can feel fine but others where it's still completely numb. Top of scalp of course still numb too

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Alyssa M.

Everything has been very close to normal in my forehead. The only issues I had were that the muscles were a bit pulled and therefore sore, and that I accidentally blew my nose gently in the first week — not allowed! They sent me flowers after the surgery, and I shouldn't have kept them in my room. I ended up feeling a tiny bubble of air escape from my skull into my forehead between my eyebrows ... but then everything was fine and there have been no issues since. Feeling has been close to 100% from immediately after surgery, with the only reduction being due to very slight swelling that reduced sensitivity ever so slightly. (There was much more swelling around my eyes.)

As for the scalp, I feel like sensation is returning slowly. It has been two months now, and I'm still feeling gentle taps either as a tickle or very slight pain, and it seems more consistent and sensitive. Sustained pinching or pressure still doesn't yield any sensation. There's a sensitive area on the boundary between the numb area and the sensate area, where touch can be a bit painful, though it's not an issue in everyday life. The itching is less bad than it was originally, though it still comes back occasionally. The whole area is about five inches by maybe 2.5 inches.

I'll continue to update as time goes on.
All changes, even the most longed for, have their melancholy; for what we leave behind us is a part of ourselves; we must die to one life before we can enter another.

   - Anatole France
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