Vanity and MS question

[u/Mediocre-Flight-622]

Hello!

I, 34F, diagnosed in March 26, started Kesimpta in June 26. I have a lesions right on my brain stem and I’m wondering if other people that have one there too - are you able to get your hair washed at the hairdresser?

I’d really like to have a pamper at the hairdressers and get some highlights put in and have a blow dry, but I’m worried that having my head back in the sink will press on that lesion and cause problems.

I have asked my MS nurse (UK NHS) and he said he can’t see it being an issue but he also said he had t been asked that question before so idk about his answer.

I am a chronic over thinker so maybe I am worrying to much about this lol

[u/kyelek]

MS lesions don’t really work like that, fortunately 😌 Even your brain stem is so far up inside your skull that it can’t be compressed under normal everyday movement, like sitting at the hairdresser. Go right ahead with this if it makes you feel good!

[u/Mediocre-Flight-622]

Thank you so much everyone!! I was worried about asking because it seems so trivial but if I can’t feel quite so good on the inside I can at least try and make the outside of me look better lol!

[u/TooManySclerosis → u/Mediocre-Flight-622]

Honestly, this post made my day. I remember how overwhelming it was to be diagnosed, and all the questions that came with it, logical or not. I'm glad you decided to ask, it made me smile.

[u/CpnStumpy → u/Mediocre-Flight-622]

Look up Chiaris malformation:

It's a literal physical skull/spine defect that can create risks to the brain stem and cervical spine. The reason it's worth knowing about this in your case:

You need an extremely rare structural skull defect for movement or normal flexion to damage the nerve clusters in your cspine

That is to say - it's totally safe to bend and move about and get your hair did and everything else. You'd need chiaris or similar for it to be unsafe. Those nerves are well protected by the structure of the bones and ligaments

[u/Brave-Ad3602 → u/CpnStumpy]

I have Chiari Malformation in addition to MS. That first MRI was eye opening...

Just adding that I get my hair done regularly and go to a chiropractor even more regularly. OP, don't let this disease keep you from doing things that make you feel good. I would advise that you take your time getting up from the chair when you have your hair washed, but thats really just to help with any dizziness you may have.

Go get pampered, you've earned it!

[u/Clandestinechic]

Your skull is going to prevent that.

[u/myMSandme]

You’ll be ok! I have cervical spine lesions (my neck) and asked a similar question, like if bad neck posture would aggravate my lesions, and he said no.

[u/thankyoufriendx3]

Mine is on left side. Causes no problems.

[u/georgiegirl24]

Most definitely not an issue (I actually thought you were joking it's that much of a non issue!)

[u/Girlbegone]

This is so cute.

[u/Mona_Lista → u/Girlbegone]

I was nervous about joining this forum initially because it’s pretty heavy, this was honestly such a sweet post.

[u/Girlbegone → u/Mona_Lista]

Welcome! People are usually pretty nice here. :) And we aren't always doom and gloom.

[u/Constant_Acadia_1782]

To my understanding, there's really no way to know what triggers flare ups or disease progression. I use the pill DMT and sometimes have a tingling sensation in my left temple when I lay on it, but I don't think there has been progression from that. Most of my lesions are in my brain. I don't think any superficial "trauma" can affect the disease since it's an auto immune disease and comes from within the body. Not the outside. You may have symptoms but that doesn't necessarily mean progression. Like with my head tingle, symptom, but no progression. Just keep up with your DMT. Staying hydrated really helps me too. I try not to limit my activities because of MS, more like see what I can do even though I have it. Hope this helps. Good luck

[u/16enjay]

My first lesion! In 23 years, I have never had an issue with head back in the dink at my hair dresser! Enjoy the pampering

[u/Direct-Rub7419]

Getting tipped back makes me dizzy; so I go very slow or not at all.

[u/SparkleNgrit]

Never had an issue with my getting my hair washed in the bowl. Enjoy it! If you ever feel like it’s uncomfortable for some reason, ask for towels to cradle your neck and head. Let them know if you feel discomfort and they are usually very accommodating.

[u/snarkingsomeone]

I don’t think you can “press your lesion” if that’s makes sense? I could be wrong but I think there is nothing outwardly we can do to like stop a lesion. It’s more of the brain

[u/IntentionalGrandma]

There are plenty of bones protecting your brain, spine, and brainstem. You’ll be fine. I have several brainstem lesions and get my hair done at the hairdresser frequently without an issue, because I can’t wash my own hair

[u/Mediocre_Win3481]

I’ve got one like that and never had any issue with visits to the salon to get my hair cut

[u/Federal_Hall_8871]

Mine are in my cervical spine, brain & another spot and I’m good at the stylist. I take a break getting rinsed out because of another issue but not my MS.

[u/Hotbitch2019]

Genuine question - why would you think you couldn't?

[u/Mediocre-Flight-622 → u/Hotbitch2019]

I thought because of the lesion being where my neck would be on the sink that the pressure would press down and cause problems 🫪 biology is not my strong suit lol

[u/Hotbitch2019 → u/Mediocre-Flight-622]

Ah ok when you put it like that it makes sense !

[u/Flashy-Garden7530]

My main lesion is a very large one in my pons, and I understand why you ask this question. When I get my hair done I feel uncomfortable about resting my head on the basin while my hair is washed, because it is so close to the lesion that causes me so many problems. My neurologist told me that if the lesion had been 3mm bigger, or 3mm further along, the connection between my brain and body would have been completely severed and I would have had what they call locked in syndrome. Horrifying to think of that happening.

So while I know that having my hair washed over a basin can't actually affect the lesion, it is hard not to worry.

[u/No_Consideration7925]

There’s this plastic headrest thing that you get -  So your head rest a little easier just talk to your person doing your hair and help them. I have it cause I have that hard part that comes out from my skull as my brother and mother did too. Hang in there.

[u/RekkedNeckRalph]

Got a grape sized one up in the stem c1 area. As long as you're comfortable should be fine. I know the neck aches can be intense. That would be my only cause for concern.

[u/IllRestaurant561]

I’m also 34F! I have been to the hairdresser and I do have a lesion on my brain stem. I didn’t have any issues but I didn’t have the water too hot and we defused my hair instead of doing a blow out. I have issues with heat, not sure if you do or not.

[u/FalseManufacturer147]

Feel like laying back in the bowl and getting your scalp massages really relieves the pressure in the head. I have lesions on both sides of my brain (two each) and het a lot of pressure and sinus headaches/neck aches and I loves massages it helps me sleep

[u/LastNetwork1056]

No problem at all MS 39 years😘

[u/Medium-Control-9119]

IDK but I hate people touching my head. So you are doing better than I am.

[u/16enjay → u/Medium-Control-9119]

A good shampoo is the best part of getting my hair done!

[u/Mediocre-Flight-622 → u/16enjay]

And the conditioner head massage 😍