Hair Loss After Surgery???

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Phillip Mosokotsp

New member
I had anti-reflux surgery about 9 weeks ago. On the day of the surgery, I noticed I was losing a lot of hair. Much more than normal. This has continued for the last 9 weeks. Everyday when I wash my hair, I have several handfuls of hair that fall out. I used to have extremely thick hair, and it is now on the thin side.

From what I have read from internet research, surgery can "stress" the body and result in hair loss, but the hair loss usually occurs abour 3 months after the surgery. I haven't even hit that point yet. I have been concerned about my nutrition after the surgery and have been taking supplements, but the hair loss actually started on the day of the surgery.

Does anyone have any experience or insight into hair loss after surgery? If so, how long did it last?
 
I'm so glad to see a reply from you feelbad. I just knew some day I would run across someone like yourself who is now dealing with the consequences of accidental SNS damage and that the side effects would be very similar to those caused by a surgery called endoscopic thoracic sympathectomy or ETS. Just so you know, I myself have not had the surgery. I have hyperhidrosis or excessive sweating and ETS is marketed as a "cure" for this condition. The surgery has been performed on tens of thousands around the world, even on very young children. People claim they have been helped by this surgery but many have ended up with terrible side effects, same as those which I see you are dealing with.

ETS is performed on T1 through T5 in different combinations and I don't quite know how that will relate to the C8 you mentioned. Horners happens when the T1 or stellate ganglion is damaged and mostly the surgeons no longer treat that area. Horners besides the droopy eyelid or fixed pupil can mean anhidrosis or extreme dryness around the eye.

The most common side effect is compensatory sweat which often means clothing soaked with sweat on the torso/groin. It usually occurs from the nipple line down while the upper body has anhidrosis or extreme dryness. As you have experienced, there is a thermoregulation imbalance which makes adjusting to different temperatures very difficult....coming into A/C from hot outside, the body can't adjust.

Many have developed RSD symptoms. As you already know, RSD can be difficult to diagnose and when the ETS people seek help for their pain, many doctors have no clue that it is RSD. Some people develop Raynauds after ETS. Believe it or not, there are surgeons that market ETS as a cure for RSD and Raynauds when actually it can be the cause. Temporary relief does occur for some but usually within a year, they come back worse than ever.

Other side effects are mental fogginess, impotence, weight gain, extreme hand dryness, among other things. Extreme fatigue is one of the worst to deal with. They lose their hair and eyebrows, fingernails become brittle. Surprisingly people can go as much as ten years before the side effects show up. When that happens, they don't realize the connection to ETS unless they do a lot of research.

You say at times you feel like a freakshow. You are definitely not alone with that. I can't tell you how many times I have heard the same thing from the members of my group. Because this surgery is elective, they don't get much sympathy or understanding.

I wish I could show you some of the photos of their sweat patterns. You would be interested to see that I am sure, just to compare. I think we're not allowed to post links here??

Dripping Silver
 
god i just feel sooo bad for these people. are they actually fully informed of EVERYTHING,including the very real possibility of developing RSD when they consent to this surgery?? i am glad you did not go with this surgery,really. this has been the most insane part of my spinal cord damage as far as what it can create or trigger spontaneously for me to have to deal with. this hair loss thing is just totally insane too. i just never ever in my wildest nightmares could have imagined me,with all this freaking hair,being almost down to nothing compared to what i had. crazy stuff.

my spinal cord damage just happened to be right at the c8 nerve level. while you do not actually have a c 8 vertebrae you do have a c 8 nerve. it is the ulnar nerve that innervates the ring and pinkie fingers in our hands? i took alot of fine motor loss in my left in those fingers among others,hence the great typing here? my sns was simply damaged while they were trying to remove what is called a cavernous hemangioma from within my cord. did not have a clue this glob of blood vessels was there til i herniated a disc,which just happened to be right above the cav at the c 6-7. it just showed up on my routine MRI. since the lesion was left lateral,it was very very close to where the sns leaves the cord and goes out to the outter side of the spinal column? this occurs AT the c 8 junction unfortunetly. i just did not have a clue about that damage til the horners hit about three weeks post op(i simply noticed in the mirror one night my left pupil was pinpoint while my right looked blown) while i was in a rehab hospital trying to relearn how to walk with my left leg and regain some level of function back with my left hand again. i actually lost eight fine motor nerves in that hand. typing actually keeps things moving. horners can develop just having your sns damaged at any level,not just the stellate. they didn't hit my stellate just the SNS.

i cannot even imagine electively "choosing" this type of surgery after what i have had to learn to live with. geez,these people simply cannot be as fully informed pre op as they should be or i wouldn;t imagine anyone would go thru with this,really. i do realize what hell it is to overly sweat to the point you just soak thru your clothig all the time,i actually had a horrid time with this as a teen. it sucked,but eventually got better for me. and now this?? it really is sick what you mentioned about the docs touting this as much as they do when some people will end up living in pure hell. god,how DO they sleep at night ya know?

so just exactly what is it you do for these people? if i can be of any help to you,just hollar,K? believe me,i do know their brand of suffering. getting to the right type of pain management facility is what gave me some life back again. the symp blocks can help alot with some peoples issues and even in some cases,create a form of remission with repeated blocks done. i have had some good results with them. my TENS unit has been what i use for the flares. i did have some good results with lyrica but the side effects were just way too much for me to deal with and actually made me pretty non functional.

like i said,if you need anything,just hollar,i am always hangin around here in the mornings. take care silver, FB
 
welcome to this insane club MR. i too used to have extremely thick and natural wavy hair,with too much hair for the size of my smaller face to boot. now move ahead to after my spinal cord surgery damaged my sympathetic nervous system,and bammo,hair loss up the wazoo now. this has been going on little by little since 03 when my SNS became damaged. it is now really really showing itself in a very big way. i NEVER ever thought that i would be dealing with this particular problem,but i am.

our sympathetic nervous systems actually govern hair and nail growth. there are many different areas where this could actually be damaged or affected,from the actual cord,spinal column(the sns chain actually runs down along both outter sides of our spinal columns) to something damaged that crosses your chest area since the SNS crosses over that area too. this could also be a metabolic or endocrine/thyroid related issue too. as you can see,there are many possible reasons for this to be happening and each one should just be tested and ruled out by your doc. i just happen to know without a doubt where mine is stemming from(i also have RSD which also affects the nails and hair too only becasue this pain syndrome IS SNS triggered). just look up what the sympathetic nervous system governs and see if there are any other issues there too that you have as real symptoms of possible SNS affectation. if othing else really matches,then you can at least move on to other testing for the hair loss. believe me,i DO know how you feel. i seem to have much more profound loss on my right side vs my left. very crazy,espescially when i am trying to just do my hair with one side having more and the other much less. we are a bit uneven at times. really sick.

just do some checking on what different things can cause hair loss as a symptom of something else. good luck MR and please keep me posted on what you find out,K? FB
 
feelbad, if you don't mind...I am curious. I have a support forum for people who have had elective surgery on their SNS because of excessive sweating or blushing. After the surgery many (not all) now sweat excessively from their torso (compensatory sweat) plus other side effects like hair loss, fatigue, pain, many more. Have you noticed a difference in your sweat pattern after the damage done to your SNS?
 
Thanks for your offer of help FB. At this time there's really nothing that can be done to help. The only thing I can do for them is provide a place where they can come and learn from each other and talk about the various remedies that either work or don't work. Also many have gone back to their surgeons to discuss the outcome only to be told it was not connected. They come on my site and they read about dozens of others experiencing the same side effects which confirms their suspicions, and they no longer feel quite as alone.

You have the additional burden of a spinal cord injury along with the SNS damage. I must applaud you for working through all those injuries and being able to recover a lot of function under very difficult circumstances. You must have a lot of inner strength.

Thanks for the info on Horners. I did not know it could occur due to damage in other areas of the SNS. Don't we just love the internet! All the things we learn!

Dripping Silver
 
i really am glad there is someone like you out there who is connecting these people together to at least compare notes. the strange and just off the wall types of things that come along with sns damage are just nuts. you feel like no one could possibly understand just what in gods name you are feeling or going thru. you do a great thing silver,really.

one huge thing i need to ask you just becasue of the nature of this type of 'injury' and what i have experienced? since you do have a group of people there to get info from,i am very curious about one biggie here that i got stuck with,or 'in"? for some insane reason,just becasue our SNS does govern our 'fight or flight' ability,my body is actually kind of 'stuck' in that mode and has been since the day of my surgery. the biggest impact this is having other than just always feeling "amped up' all the time,is its affect upon wieght loss. i simply cannot take in enough calories in any given day to counter what simply gets burned up during any normal day. i have been steadily losing wieght like crazy and have like no body fat what so ever any more. it sounds like it would be a really great thing to have wrong,but i am hanging around like 92 lbs right now,and have no real butt to speak of and am wearing a size zero pants that at times is also too big on me. this is just so completely insane to me i cannot even begin to explain it. i look and feel like a freaking coat hanger.

i do know there are some on the RSD board here that are also having this very same issue happening,they simply cannot gain and keep losing no matter what,but i am wonderig how the people you are dealing with are with regards to having their bodies also stuck into this mode too. could you enlighten me? it really would help me. thanks hon, FB
 
I always thought it was the anesthesia which caused hair loss post surgery. If you don't get a satisfactory answer from your surgeon, you might consult with a dermatologist. My hair finally grew back after both my surgeries. Good luck!
Soibhan
 
Here is where things get separated feelbad. Some (by no means all) people who sweat or blush excessively also suffer from social phobia/anxiety. ETS is recommended by some surgeons to cure social phobia. Some people that are anxious actually welcome the loss of emotion, the slower heartbeat and what is often said....no more goosebumps. Many report losing the feeling of joy and even the loss of fear. Their fight or flight response is dulled. This is very different from what you seem to be experiencing.

The outcome of the surgery is random. After all these years no one can predict the severity or frequency of the side effects that will occur. So while losing the feeling of anxiety can be good for some, there are many others who never had anxiety to begin with. How good of a songwriter can a person be if his senses are dulled? A policeman who feels no fear or urgency? A parent who no longer finds joy over what their children accomplish? An athlete who no longer cares about winning? (Again, not everyone gets like this, but many do).

Many have reported weight gain, not weight loss like you are experiencing. Some of it could be attributed to having to live a different lifestyle because of the fatigue. Others no longer are as athletic because they have lost the ability to sweat from the head which is the body's main cooling down area and others are embarrassed to workout in a gym because of the soaking sweat from the lower body. That's just a couple of the reasons thought to cause the weight gain.

I didn't answer one of your other questions either. Before the surgery, most surgeons will only talk about two side effects....a small amount of compensatory sweat and the possibility of Horners. That's about all that the surgeons will discuss. People have wrongly assumed that because the surgery is covered by health insurance, it must be a safe surgery to have done. It's only after it's too late that they really begin researching what the SNS is really about.

If you have any more questions, feel free to ask. I did find your experience very interesting, I have to say. I have been thinking about you and what you have had to go through. You must be an inspiration to people that meet you.
 
wow,whatever happened to "full disclosure" before any surgery?? its too bad that you cannot actually get to these people BEFORE they have to come looking for reasons and answers. the being stuck in this fight or flight thing is rather bizzarre at times. i didn;t realize that this also had an effect,or the opposite effect i would have assumed it would on my metabolism(i assumed since the body needed energy for that fight or flight that the metabolism would actually slow not speed up to ungodly hieghts). but i think having everything simply 'dulled' or just not there at all would be much worse than what i have to deal with,ya know what i mean?

this really has been an eye opener for me silver. i do wish those people well,as much as they can at this point. what a crappy thing to deliberately do to a person and their life. if you ever have any questions or anything else you want to ask me,just hollar. i am usually here every morning trying to help guide people in the right directions for Dx,or help navigate thru medical hell. been thru alot with myself and my son. i have done soo much research on his situations and mine that i feel like i could hang out my own shingle at times ya know? its too bad that all this info is in my head only becasue i needed to find my own answers and explanations for insane things. back when i actually had a life,i used to help people being a FF/medic,now i do this instead.

bless you and the work you do for the people who became victims of a surgery they didn;t fully understand. keep me posted silver. its been great chatting with you. FB
 
This site was one of the few where I found ANY information after I had surgery and noticed a huge amount of shedding, so I'm adding my story for the record.

I had back surgery and almost 2 months to the day after the surgery my hair started really falling out -- at least four times what was normal. That's a lot of hair loss. Thanks to posters here I realized it was normal after surgery and would eventually stop. And it has -- but only after I got to 6 months post-op. So that was four full months of heavy shedding. I'm actually wearing my hair longer now until I get some more new hairs.

My dermatologist, noted in the hair loss area, said it wasn't the anesthesia, but the stress of the surgery on the body. She also said she saw lots of new growth -- micro hairs -- but it would be a full year before I was back to normal.
 
Your experience sounds more typical than mine. I started noticing my major hair loss the moment I woke from surgery. They say it is often at the 3 month mark that many people notice the hair loss. They also say you lose for about 3 months. (The cycle of hair loss/growth.) I too had major loss for 4 months. I actually had thyroid testing at month 4 because I was worried there was something else affecting my hairloss (the surgery I had also affected my diet). Thankfully, I had thick hair to begin with so my hairloss wasn't visibly noticable to others. My shower drains noticed it though. ;) I am now totally normal with regards to my hair loss. I just wish someone had told me that the trauma of surgery would cause something like that. I was worried enough about healing from the surgery already.
 
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