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scarface

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scarface last won the day on July 8

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  1. Do either of you know if Dr. Bell removed your T2-T3 ganglia as well? I came across a study this week from Japan where they eliminated CS by removing ganglia.
  2. I had the surgery done twice. The first time was with clipping. Blushing returned after 6 months. 8 years later I had a redo and this time they cut the nerve above and below T2. Side effects were much more severe after the redo. So I got a reversal last year with the sural nerve. Side effects have improved very very slightly. Hoping they improve some more but not enough so that my blushing can return. Those were such dark days and the blushing completely destroyed my life.
  3. If I are dead set on getting ETS then go with Nielson. His micro ETS approach is better than the traditional method that Gorenstein uses.
  4. skriim, My heart goes out to you. You have the worst of both worlds. If you get a redo ETS and have them cut the nerve then at least you'd get rid of the blushing and CS might not change at all. Who knows though, if you don't get a redo then you're CS might improve one day and then you'd only have to deal with the blushing again. It really is a terrible situation and there is so little help offered for us. If I were you I'd give my body a year or two and see if CS improves. If it does, I'd manage the blushing with medication and never do surgery again. If not, then it likely won't ever improve and then I'd get the redo to at least get ride of the blushing.
  5. To anyone who is interested, the ETS reversal is done. You may follow up with my progress and read about my experience on the ETSandReversals website. Here is a link to the thread: https://www.tapatalk.com/groups/etsandreversals/scheduled-for-ets-reveral-on-08-31-2018-t6289.html
  6. I skimmed through your post history and it seems like you’ve only tried makeup so far. Is that correct? If that’s the case, then give medication a try. Prozac eliminated my blushing 90%, Xanax eliminated it 100%. I didn’t like having to take medication, but your opinion on that may differ. They have 1 pill per week versions of Prozac and Effexor rather than having to take pills every single day like I was doing. I’m not sure if recommending ETS is a good idea anymore. I can only share my experience. It stopped my blushing, but changed much of the rest of my body in a way I don’t like. If I HAD to pick a choice, I would go with the medication option and be done with it.
  7. I have noticed this a few times myself after my last ETS. Normally, I don't even get the sensation that I am about the blush anymore. But, sometimes I get caught off guard and feel a "fight or flight" moment and I do get a sensation that a blush is coming on. However, that sensation signal goes up to about my chest and then seems to bounce back down to my lower body. At this time I do feel a slight tingling in my lower body with very mild perspiration on the skin. It is definitely a sympathetic signal that my mind/body is trying to send to my face but cannot due to the sympathectomy.
  8. Surgery is less than 1 week away. I am getting very nervous, but feel I must get this reversal done as I am unhappy living with my side effects. Hopefully sharing my experiences can help someone out there. I will update you all after the surgery is done and will keep an ongoing log of how my body is reacting.
  9. Nobody knows for sure what your results will be. T2 should be all you need, but it seems like it is somewhat common to cut T3 as well for a redo.
  10. Hello all, It has been just over 1 year since my ETS redo procedure. I am now scheduled to get a reversal procedure on August 31st of this year. The procedure will be done by Dr. Matthew Kaufman. I spoke with Dr. Kaufman over the phone and I feel I am in good hands. He has a lot of experience doing nerve grafting to the phrenic nerve and has seen good results. An ETS reversal is technically not much different than that. As of now, the plan is for an inter positional nerve graft between T1 and T2, and between T2 and T3 bilaterally using the sural nerve from my ankle region. As Dr. Kaufman explained to me, he will not actually be grafting to the T1, T2, or T3 ganglion. Rather, he will be grafting to the "stubs" of nerve fiber that sit above and below the ganglion. Grafting to the ganglion can cause injury which leads to side effects. Studies show that most patients experience at least some relief from ETS side effects after undergoing an ETS reversal. There is a small number of patients who report a drastic improvement. At the same time, no patients report a return of their original symptoms (blushing, sweating, etc). So, this could potentially be a very happy medium. I joined this forum a long time ago. Back then I read many people posting how hopeful they were that a cure is right around the corner, but unfortunately there haven't been any drastically new developments. The goal is to no longer be a facial blusher while not having to deal with the ETS side effects of CS and excessive hand dryness. If this works, then I would consider my physiologic problems solved. Undergoing an ETS procedure followed by an ETS reversal may the closest thing to a cure that we may have in the foreseeable future. I am anxiously awaiting to get this done. My plan will be to use growth hormone peptides after the surgery to help promote healing.
  11. Go on pubmed and look for sympathectomy studies for blushing and sweating. You will find that none of them indicate T4 for facial blushing.
  12. That is not accurate. All things considered, the trade offs from side effects are about even with the torment from blushing, with perhaps a slight edge to the blushing being worse to live with. I am seeking a nerve graft reversal because studies show that most patient experience some relief of side effects from ETS while no patients report that their original problem (blushing, hand sweating, face sweating, etc) returned. So, the result is a happy medium. The only reversal patients who experience a return of their original symptoms are those who were clamped and underwent reversal by having their clamps removed.
  13. 1 year update since ETS, 4 month update since Sauna Therapy. It has now been exactly 1 year since my second ETS. My side effects have somewhat diminished with the exception of my hands. The CS is about the same this summer as it was last summer where I do have mild to moderate CS pretty much ever time it gets hot, but the peak severe CS that I had a few times last year I have so far not experienced this year. This may be due to the Sauna Therapy treatments I have been doing which I will write more about below. My hands, however, seem to be getting a little worse with the pruning. The dryness is still the same, but the skin on my fingers and palm can get severely wrinkled and pruned. As I have mentioned in prior updates, the hands are an issue for me since it makes touching things uncomfortable and it is very bizarre having hands like this for most of the day. Other side effects remain as well. I definitely feel a sense of "split-body syndrome". This can best be described as a sensation of "activity" in the lower 2/3 of my body while the upper 1/3 is completely inactive. The "split-body" sensation I have somewhat gotten used to, but it still strikes me as somewhat disturbing at times. The last side effect I will touch on is heart rate. During my last doctors appointment last week I had a heart rate of 70, so maybe my heart rate is somehow recovering (it was pretty consistently in the low-mid 60's every time I checked it over the last year). No other updates on other side effects. I am still 100% blush free. Recently, someone at my job really put me on the spot hard in front of many people and I became very self conscious. I swore in the moment that I felt a very very faint blush coming on, but the sensation of the blush was very weak and came on very slowly. To my shock though, someone in the room said that I was blushing. On the one hand I kind of couldn't believe it, but on the other hand the fact that I did not really feel a blush sensation in my face coupled with the fact that my overall anxiety level is much much lower nowadays made me not panic the way I would have during a blush in the past. Later that day I actually saw the guy who said that I was blushing and I asked him outright if my face really was red earlier in the day. He said "no" and that he was just kidding because our co-worker that put me on the spot I guess has a crush on me and she was overdoing it with her flattery in front of others. So, I don't know if he was being nice to me by saying that my face wasn't red or if he was being honest. But like I said, the sensation of the blush came on very very faintly and slowly was 100% manageable. I have not experienced anything like that since then, and honestly I think even a non-blusher would of blushed in that moment. As for my hands again, here is a picture of how bad they can get. This was taken about 1 month ago and was the most severe dryness/pruning I have had to date: Regarding the Sauna Therapy, it has allowed me to assess relatively extensively the effects of the sympathectomy and how my body reacts to dry heat. I have been going into the sauna 2-3 times per week over the last 4 months. I have stayed in the sauna for about 20 minutes each time while it was at a temperature of about 170 F. Before stepping into the sauna, my hands would be in the usual dry and pruned state. Within 1-2 minutes though, the pruning would go away and the skin on my fingers and palms would become completely smooth again. This is always a pleasant phenomenon that I look forward to every time I step in. Over the next 10 minutes my body would slowly begin sweating from the lower 2/3. The sweating was initially very severe during the first month, but it has mildly to moderately decreased in peak intensity over the next 3 months. Perhaps I trained my body to cool itself more efficiently while in the sauna somehow, and this effect seems to have translated into a benefit for my CS in normal everyday life. I have been outside doing work in 80+ F temperatures and I have not experienced the same severe CS as I did last year before I started the sauna therapy. On the flip side though, my hand pruning has gotten worse and perhaps these two effects are related. At the 10-12 minute mark in the sauna, I begin to notice speckles on the top of my right hand...SWEAT. By the 15 minute mark, the sparkles have turned into a film of sweat covering the entire top of my right hand. By the 20 minute mark, the sweat on my right hand has spread from the top, to the right edge, palm, top and bottom of wrist, and even to my 4 fingers but not so much to my thumb. From my wrist, early on it seemed like it was spreading up my arm but it no longer seems that way. I will mention that the surface area of my right hand where the sweat was coming out of grew over the first 2.5 months but has since tapered off. Initially, it was only the speckles, but my hand began to sweat more and more but unfortunately it isn't spreading anymore. I reached a pinnacle one day where the sweat accumulated enough that a little after 20 minutes in the sauna the sweat from my right hand even began to drop to the floor very slowly. The first drop that rolled off me I was very ecstatic about. At the 20 minute mark is when I start feeling very lightheaded and uncomfortable and really feel like getting out. I have pushed myself once and stayed in for 25 minutes, but I saw no other changes in my body from where I was sweating or how much. My tolerance to this heat has actually gotten a little worse. I now find that at 15 minutes I start getting light headed and uncomfortable and really have to push myself to stay in for 20 minutes...not sure what is up with that. After the sauna, I almost always went directly into the shower to rinse off and then into the pool for about 10 minutes to cool off. I have found that if I skipped the pool, then my CS would resume in a mild state even after I got home from the gym. I really need to get in the pool for a while after the sauna to bring my core temperature down if I want to CS to not happen at all once I get home. After the pool, I always stand in front of a mirror in the locker room and I can see a clear split in my body right at my armpit line where my ability to sweat starts and stops. The line of demarcation seems to be apparent due to flushing of my skin. My upper body remains flushed likely as a way to dissipate heat better since I just spent that much time in the hot sauna my poor upper body can't sweat like my lower body can. This line of demarcation is exactly where my body has been "split" by the sympathectomy. This line has not at all raised or lowered itself over the last 4 months. It has remained in almost exactly the same spot. Here are a few photos of what I am talking about: It looks very similar to this guy: That is all I have to say for my 1 year update. From this point, I don't believe there will be any more post-ETS updates since I am now in the process of planning to get an ETS reversal procedure. I will post more information about this in a separate thread that I will start for that topic. The only way I will update again is if my body does something radically different between now and my reversal procedure.
  14. Thanks for updating us with your progress. I am happy for you that your body has not reacted badly to the sympathectomy, and that the blushing only affected you for a few years. Perhaps your weight training and good health has resulted in your body being much more capable of adapting in a way to make itself happy. I will keep my fingers crossed that it stays that way.
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