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About CVGB

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  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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).
  9. 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: I have mild Cutis Verticis Gyrata. It is on the top of my head, not on the sides. I have 8 ridges. The ridges are symmetrical (left to right). Information related to the thinning: 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. I noticed the thinning in the past year, but the CVG has always been there. I remember first noticing it as a teenager. 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: Does anyone else have hair thinning that matches mine? How does CVG change over time? 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. If the thinning continues, is it possible to get a hair transplant on just the ridges?
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