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Hi, I am looking for advice from other people who also have Cutis Verticis Gyrata, or doctors who have experience with Cutis Verticis Gyrata. For everyone else, you are welcome to be supportive, but what I am really looking for is first hand experience. Thanks.

 

Here is some basic information:

 

  1. I have mild Cutis Verticis Gyrata. It is on the top of my head, not on the sides.
  2. I have 8 ridges.
  3. The ridges are symmetrical (left to right).

 

 

Information related to the thinning:

 

  1. The hair is thinner on the ridges. I want to be really clear about this. There are literally less follicles per square inch. In other words, it is not an illusion caused by stretching of the skin or criss-crossing of the hairs between the ridges. I looked carefully with a magnifying glass. I would say that the hair is 50%-75% thinner on the ridges where the scalp is thicker. See picture.
  2. I noticed the thinning in the past year, but the CVG has always been there. I remember first noticing it as a teenager.
  3. I don't have much balding in my family history on either side. It is possible I won't have male pattern baldness, but the recent thinning (only on the ridges) does concern me.


 

 

Questions for those with first-hand experience:

 

  1. Does anyone else have hair thinning that matches mine?
  2. How does CVG change over time?
  3. It is my understanding that there is no connection between balding and CVG. However, wikipedia and other sources say that it can cause thinning. Any information from a doctor, or from someone who has dealt with this personally would be helpful.
  4. If the thinning continues, is it possible to get a hair transplant on just the ridges?

 

CVG.jpg.6d87d4b193f9ec9649d1cfc42d58abda.jpg

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The pic you took is so close it is hard to tell if there is actually a patter developing.

 

Yes, you can get a transplant on the ridges, but it may have a bit of a lower yield. MPBsucks has it and had a transplant and said he though it didn't grow as well in that area.

 

I would like to see a more distant pic if possible. You can search my thread titled "spanker sets a date" and it will have a CVG pic of mine in it.

 

I do not think CVG (unless very severe) causes hair loss, I just think that hair loss shows up possibly years earlier in areas that have CVG because blood flow is compromised and it shortens the hair life cycle.

 

I am not a doctor but I familiar with it and have the condition. My HT was done on the hair line so not much of my CVG was hit. There is some very slight thinning in a cvg area behind the hair line. This could become a problem next year or a decade from now. I am on finasteride and minoxidil.

 

I have seen many older me with CVG that have no hair loss and have seen men with CVG that are bald and have a developed pattern with no hair loss in the the safe zone that has CVG. This is why I feel that CVG hair loss is linked to MPB hair loss.

 

Scalp reduction is always a option should things get bad.

 

Dr. Cooley has done a scalp reduction and it was documented on this site. The pt looked a lot better.

 

Anybody can put anything on Wikipedia and I don't think that there has been many good case studies on CVG.

 

Mine has not changed much since 18.

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Wow, thank you so much for all of your input. My hope is that the thinning won't get worse. You mentioned restricted blood flow in the CVG area having some link to MPB, that sounds like a pretty good theory to me. If you come across any new articles, I would love to read them. I will post more as more story develops, including if it doesn't- as it might give relief to others.

 

I have also noticed that a lot of the people who have CVG have some hispanic or black heritage. I'm part Mexican myself. I'm including two new pics, one to show what it looks like from the top, and another from the side (from the side it is not noticeable).

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I actually have very slight cvg in the center like you but not as pronounced. In fact, I never really noticed the center until recently, but my wife said that it had always been there.

 

As far as your head, I feel like you should see a hair restoration specialist and get a miniaturization study done. What state do you live in?

 

I don't feel that you are a candidate right now, but if you keep an eye on it, it will help you know when you need to start saving for a procedure. Also, I think any study on people like us is positive for all of those suffering. Information can travel fast with the internet now and we may be able to help others in the future.

 

I see a couple spots that may be thinning in a patchy type pattern but I see no defined MPB pattern yet. I do think a lot of your thinning look is not as thin as it appears.

 

1. The hair goes in different directions and you have high scalp to hair contrast.

2. You would naturally have less follicles because your skin as stretched in those areas. You are born with a certain amount of follicles. When you get this condition you don't grow extra follicles so it you skin stretched 15 percent on a "ridge" your density should be about 15 percent lower in that area. Add the fact that the hair is spread out and your high color contrast and it will look like you have lost more than you have.

 

Best advise is to keep an eye on it and get a miniaturization test. Then the doctor can recommend minox or maybe even finasteride, but if it is not MPB related, the fin won't help.

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Thanks badbeat. I had not heard of toppik. I like to wear my hair short, so I think this could be a really good solution.

 

Thanks spanker, I plan on talking to my doctor to see if she can suggest someone. I also agree that if you have something rare it is good to let someone study it.

 

For others, I found a good link comparing hair thickening options:

Toppik versus Caboki vs Nanogen vs Dermmatch

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  • 1 month later...

I saw a HT doctor. He didn't seem to think that he was seeing anything out of the ordinary. When I mentioned CVG, he seemed skeptical and asked me who diagnosed me.

 

Here is the diagnosis from the HT doctor:

 

  • You don't have CVG. It's within the normal range and if you did loose all your hair you probably wouldn't even notice it.
  • The unevenness has nothing to do with you hair loss. You have Male Pattern Baldness.
  • The appearance of rows is from the skin being stretched over the raised areas.
  • A scalp reduction would be unnecessary and would leave you with a scar. Concentrate instead on keeping the hair you have.
  • He prescribed me 1/4 tab of Finasteride a day, and Rogaine 5% solution.

 

 

I'm pretty happy with the diagnosis, but a little annoyed that my concerns were not taken seriously. This may be because my hair has grown out a bit and the rows are much less noticeable. He did spot check with a miniaturization test, but did not feel around. If I were to shave my head, it would be a cosmetic issue (this is something I would love to be wrong about). Other than that the advice was on point. I have some reservations about taking Finasteride because of the link to high grade prostate cancer.

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I am not saying that you don't have mpb, idk. But you do have CVG, I don't care what the doctor says. I have had the same treatment in the past by a derm doctor. He had to actually get a book out and read about it and say, yeah, I guess you do have it.

 

Sorry. It doesn't seem you had a good visit, with the exception of getting your fin script.

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  • 6 months later...

Since there isn't a lot of information about CVG, I figured I would add an update. My hair loss has continued over the past few months. I am assuming that I will be bald within a few years. If I do go bald I will look into getting a scalp reduction (for CVG, not for the hair loss) to even things out. I have seen some before and after pictures that look promising. I wouldn't mind loosing my hair as long as my scalp looks normal. Surgery will leave a scar, but I could live with that, especially if it heals up well and isn't too obvious. Either way I am going to have to wait to see how things pan out.

 

I want to get some feedback from the community. Is it crazy to be thinking about surgery? If you had the same issue what would you do? Obviously anyone with CVG is especially welcome to chime in. If anyone has actually gotten surgery for CVG, or performed a scalp reduction surgery, I would like to hear about it.

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Since there isn't a lot of information about CVG, I figured I would add an update. My hair loss has continued over the past few months. I am assuming that I will be bald within a few years. If I do go bald I will look into getting a scalp reduction (for CVG, not for the hair loss) to even things out. I have seen some before and after pictures that look promising. I wouldn't mind loosing my hair as long as my scalp looks normal. Surgery will leave a scar, but I could live with that, especially if it heals up well and isn't too obvious. Either way I am going to have to wait to see how things pan out.

 

I want to get some feedback from the community. Is it crazy to be thinking about surgery? If you had the same issue what would you do? Obviously anyone with CVG is especially welcome to chime in. If anyone has actually gotten surgery for CVG, or performed a scalp reduction surgery, I would like to hear about it.

 

I am in the last month of school right now and a little busy right now (taking a short break for a few minutes). If you email me below, I will try to get you in touch with a guy if he is interested, who had a scalp reduction and an HT with a doc on the board. I can't remember who it was though. Are you sure you are continuing to lose? Would you like to post some photos? I wonder if it is MBP or just because of the CVG? I really don't know. Maybe its a combination.

 

I have a couple of thinning stripes too, but they have basically been the same for at least 3 years. I am on finasteride.

 

I do not think that you are crazy for wanting to have surgery at all, and I will do so the bottom drops out and I go really bald too. The challenge is finding a surgeon that will do it I think. You have pretty extensive CVG so you would need to find a doctor that could do it. You would not be able to excise all of it. I wonder if you could do a cut and excise the thicker parts under the skin, but keep most of the top layer? That is the only way that I could see it working for you, and it wouldn't be anywhere near scarless, but I would rather be really scarred than really bumpy.

 

It is really up to you. I wouldn't worry about what anyone thinks. It is one thing to go bald, but it is a completely different when your scalp looks like a brain. Do your research, consult some doctors, and make a decision that is best for you.

 

You COULD consider a hair system. The have gotten to be pretty freaking amazing in the past 10 years.

 

Like I said, its a choice that you have to make. You have a lot of options, so its best to do a lot or research and see what other people have done.

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  • 1 month later...

I saw another dermatologist, this one was much more compassionate. He knew about CVG from text books and had even seen some cases. My hair is continuing to thin at a rate that is alarming. I have grown my hair longer to cover up the thinning areas as a temporary solution. I asked the doctor whether CVG causes the thinning- he was very honest and simply said that he doesn't know, and that right now there isn't enough information about it.

 

He is getting me started on Rogaine. I'm not ready to start Propecia, but in a couple of months I will reconsider. He gave me a prescription for a steroid shampoo that is supposed to cut down on the inflammation- which will hopefully take care of the intense itching I am experiencing in the furrows.

 

He could not recommend a surgical solution, because he said that he doesn't know enough about the outcome, and that he would need to do some research. I'm going to go back to see him in a couple of months. Between now and then I will start looking into a surgical option on my own.

 

For the HT community I understand that scalp reductions have a bad name, but with CVG it really is the only option for smoothing out the scalp. Also the objective is different. Instead of trying to pull the entire scalp upward, the idea is to simply get rid of excess skin. Another important point is that the thickening of the scalp caused by CVG makes it more difficult for hair to grow (in my opinion, and from reading posts by other CVG sufferers). If I do move forward with a surgical solution, I will post some pictures.

 

I did recently see another member of my family on my mother's side who has the same condition. He is in his late 50's, and he his hair is still pretty thick, but the CVG is visible if you are looking for it.

 

One more note. If you have CVG and are trying to find a solution, make some posts- not necessarily here, but anywhere. It would be good to get a larger conversation started. I know that there more of you out there.

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It sounds like you found a good dermatologist. That will go a long way. I really would recommend finasteride, but I understand it is a personal choice. I would like to wear my hair short and may have skipped my transplant if I didn't have cvg and just sported a short buzz. I love the look and the feel, but the cvg made it impossible. I keep my hair a little longer and try not to look at it in the mirror and I am much happier. There is one case on this site where a person had a cvg repair and it turned out pretty good.

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I have CVG and wear a hairpiece.

 

To be honest, I want to shave my head. But the CVG is preventing me from doing so. Its hard to look professional when it looks like your brain is sticking out. So thats why I thinking of the HT. A scalp reduction seems more invasive. My ideal would be to have some hair and keep it fairly short, just so the bumps are not visible.

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Here are my unsolicited 2 cents: You appear young, you also have somewhat fine hairs, I agree with Spanker that you look like you do have cvg BUT you look completely normal hair-wise.

 

At this point, do meds if you like, but proceed on with life and don't seek out surgery yet. Even the best of scalp reduction scars would show with your current hair length.

 

Take care.

 

Dr. Lindsey

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  • 1 year later...

Thanks for all of your responses. It has been several months since my last post. In the mean time I have grown my hair longer, and that has worked out well. However, the CVG is getting more difficult to hide as my hair thins and I am once again considering surgery.

 

I have looked at several before and after pictures, the results vary, but those with less serious CVG seem to have good results. I think I would be a good candidate. My furrows are fairly straight and symmetrical and they are only on the top of my head. I'm reaching out to plastic surgeons in my area for a consultation.

 

Dr. Lindsey, thanks for your two cents. I may continue on without surgery- that has been my plan up to this point. It just depends on how difficult it is the cover up the CVG versus a scar.

 

I'm attaching photos I found online of what I think is a successful outcome from surgery.

1-s2.0-S0294126009001393-gr1.jpg.b0b74e0990cfe1f3c6c56a6a78116875.jpg

1-s2.0-S0294126009001393-gr2.jpg.9cdb030a0999a8bb86d2f11f9dcbb64d.jpg

1-s2.0-S0294126009001393-gr0.jpg.1e9daec67a7211c07112c4bf0033e625.jpg

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  • 1 year later...
Hey CVGB

 

How are things progressing? I have CVG and am in the same sort of position as you

 

Join the club.

 

I know that you were asking CVGB but I will say that I have been on meds since 2010 and my hair is still strong. I do not cut it short enough for the CVG to be visible. I have no reason (despite what wikipedia says) to believe that CVG causes hairloss...howver I think that it can excellerate hair loss in places you would lose it anyway. I know that it is quite unsightly. I think that some people will be better off with a scalp reduction, so just a transplant, and some a combination. Everyone is different and CVG is just another wrench thrown in to the machine that should be your master hair loss plan. My "Alamo" will be a hair system as that are now very good. I do not want the hassle of one but it would be better than looking like a Klingon.

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Hey Cosmo, thanks for asking. Since my last post, my hair stopped thinning out. So, as long as I don't cut my hair too short the CVG isn't visible. I'm lucky that it doesn't dip too low in the back, so I'm able to hide it easily without having to get into too much detail with the person cutting my hair.

 

I think eventually I'll get the surgery, but it looks like I have the option to hold off as long as my hair doesn't thin out. From what I remember the cost estimates for corrective surgery hover around 5-7 thousand dollars. Most doctors have never heard of this condition, much less done this specific surgery, so it might be worth flying to a doctor who has. Alternatively, some surgeons thrive on rare conditions and are interested in expanding the library of conditions they have worked on (just make sure they are highly competent). You want to look for someone who has experience in reconstructive plastic surgery. This type of procedure would be relatively easy from someone like that. I have some photos of really good outcomes, where the CVG is greatly reduced, and the surgical scar is very minimal. From what I understand that scar tends to widen over time (1-2 years), then will fade in color and prominence for the next 1-2 decades. It's definitely worth weighing the pros and cons, and considering if covering up a scar is just as much of a hassle as covering up the CVG. It really depends on the severity of your condition. For me, it makes sense to wait. If I had unlimited resources and a great surgeon, I'd consider getting it done.

 

One more thing to consider. Since the doctor is removing a large strip of scalp, with hair follicles, this an ideal situation for hair replacement. It's a lot more hairs than a doctor would generally have to work with. I'm not particularly interested in hair replacement, but if you are, then this is an additional thing to consider.

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Since this is a hair loss website, I should add that I decided not to take the hair loss medications that I was prescribed. The hair loss just kind of tapered off of it's own over the period of a year. I know this is not the experience for many people, so I feel very fortunate.

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Great to hear things are turning out OK for you CVGB.

 

It sounds like we are in similiar sorts of positions. I have a relatively minor case as well going by some of the pics I've seen on google, and I have reasonable hair coverage at the moment. I agree with Spanker (thanks for the reply) that CVG and hair loss are unrelated, but as my future now seems to include having hair to obscure either CVG or a large scar I'm looking into ways to keep my hair.

 

I'm torn regarding the surgery. You're right that it's very expensive, especially with transplants included, so I want make the right choice. Having someone slice and dice my head doesn't appeal much, but the gold standard to me would be to get the corrective scalp reduction done at the same time as an FUT transplant, then come back and have FUE transplants done to cover the scars. The first people I spoke to don't want to use the CVG excision as the donor area as they can't guarantee those follicles will survive. The area at the back of the head isn't subject to Male pattern baldness so that's where they get donor hair from as it stays in permanently. Getting the scalp reduction done right at the start means long term I give the scar maximum time to dissipate. Plus I would prefer to hide a scar than a lumpy scalp.

 

The downside to this is the extra cost, and the unknowns about CVG - what if it comes back? What if I'm only at the halfway mark of it's development now, then I'd have to get the whole process repeated down the line some time, or end up with CVG AND a big scar. So many unknowns with this blasted condition. Also, I don't know if it would be possible to hide the scalp reduction surgery before the FUT/FUE transplants kick in properly, which would be awkward at work and so forth. Just kind of embarrassing I guess.

 

Failing that I think I'll definately go in for an FUT transplant anyway, I was happy to go bald previously but If I am to have hair then I don't want a thinning crown, and If I get it done now friends and colleagues won't notice.

 

It's shit to be blessed with this rare condition, but comforting to know others are wrestling with same dilemmas. Do you reckon you could post up or PM me some of those post CVG corecction pics you mentioned?

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I'm a little late to this thread. But if I can offer any help or assistance I would be glad to.

 

I'm African American I had CVG. Im not sure what caused it or when it started. It wasn't there all the way until i was an adult. Then i grew my hair out and started getting corn rows. When i cut my hair, I noticed it was there. Not sure if it was the stress of the corn rows that contributed to it but didn't think to much of it until my hair started to thin. Then it became a problem, which lead me to start doing research about hair loss. I tried a lot of different things, eventually I found this website, posted some pics and someone pointed out that I had CVG. Whether or not CVG is linked to hair loss I'm not entirely sure but I am personally convinced it is at least somewhat. Because back then I couldn't even grow a full goatee and there I was loosing my hair at an extremely fast rate.

 

So in 2012 I had a scalp reduction followed by a FUT a month later by Dr. Cooley who is not only a recommended surgeon on this site but also happens to be a dermatologist. He did an excellent job on the scalp reduction. The scars are barely visible. My head isn't perfectly round per say but it is a hell of alot better then what CVG looks like. And as far I can tell after 4 years there are no signs of it coming back. Anyhow, if you have any questions about anything let me know.

 

Im looking into having a second HT here really soon, probably will be posting a thread in the near future about it. but good luck!

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Sociallyawkward thanks very much for the info. So you elected to have the scalp reduction first, was this because you felt it would be hard to hide the CVG even after the FUT? Did you try and keep the process hidden from friends and colleagues, like did you take time off work and so forth? One of the HT companies I spoke to said you could experience 'shock loss' of hair after the scalp reduction due to blood circulation. Did you expedience this? Thanks

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