Hi there I had my op 2 years ago and it made a significant difference to my headaches. However I have scar tissue swells in humidity and causes the same pain but milder it feels full like my ear is gonna explode my question is ''Is this as good as it gets" or should I should I have an op to try to remove the scar tissue.Im a little bit avoidant of the scar tissue op as it may cause problems by reopening my scull again but at the same time I cant deal with the pain Ii live in a very humid area and im considering moving to a place with less humidity because of this and does anyone else get super dark under there eyes on days of headaches?.I feel like this is as good as it gets but I feel wrong by saying I don’t like it because it has given me some relief but at the same time I don’t feel 100% and the docs all say I should be feeling better but I just don’t! im so tired and headachy all the damn time.
Those scars do settle… …eventually. But it does take time. There are some cremes and lotions that can assist with healing. But they only work on the skin and not the underlaying tissues. It was suggested that I too could have further surgery to remove the scar tissue BUT this would produce more scar tissue and it would take the healing that has already occurred back to 0 and the whole process would need to start again. Being that it is only the skin that they were considering removing the scarring from they were not looking at opening my skull again and the holes from the craniotomy site would still be present. My burr holes don’t seem to give me as much pain as the incision through the actual scalp.
Is this as good as it gets? Well, it has been for me. Sorry.
Merl from the Moderator Support Team
well that clears things up for me.I thought removing scar tissue would create more scar tissue haha!.Hopefully it settles im making such great progress and its taken me 2 years to start to feel ok so going backwards would be more frustrating than they actual scar tissue haha.
Goodness! It is too bad that neither one of you have received scar management information. Hopefully this info from a previous post helps.
What is scar management?
Systematic desensitization of a surgical/wound site when tissue healing is complete and stitches removed.
When to use scar management?
When the incision site is tender to the touch, has a general ache or pain, or restricts activities (using a pillow, wearing a hat, hair styles, hair cuts… ).
What to do?
There is a continuum of activities. Repetition should work up to 5-6 times a day, not before bed as they can be irritating. Session duration should also increase as time goes on though there are no set time amounts.
Imagine that you are moving the skin/incision over the skull or tissues underneath. It is not rubbing the skin as that will give skin irritation. Imagine pushing into the skin then moving forwards and backwards. You will be moving up and down the incision, perpendicular to the incision, and diagonally. It is a very small movement overall.
A physical therapist who deals with post-surgical scarring, can walk alongside you if you are uncertain on how to go it alone. Those who deal with mastectomies or more serious/violent injuries and surgeries can have more experience in dealing with scars. It is not necessary to work with someone who has experience with Chiari folk as a scar is a scar regardless of its location. Research their skill set before you go. A chat with the receptionist is not enough. Talk with an actual therapist before booking an appointment. Do not accept modalities (plug-in machines) as an acceptable form of treatment. Ask if they provide something else.
Type of touch in order of difficulty Go slow and to your comfort level.
Light … medium…hard pressure using fingers.
if you are unable to use your fingers for whatever reason, a series of soft to medium balls is effective. Laying on your back on your bed then moving to harder surfaces (plush rug to thinner rug). The dollar store, toy store, or pet store offer a selection
Harder balls in a sock for better control then going to a variety of spiked and ridged balls. Again, on the floor ( with different levels of hardness) gives good control. Against a wall can also work.
Last is more sharp or defined surfaces. Chair back edges (plushy upholstery to less to none), sofa arms, books, toys, boxes…Your imagination and surroundings will provide what works for you.
Once past the initial stages of desensitization with light touch and small amounts of time, you will build up to touch/pressure coming from all different directions and going in different directions. Building up comfort levels is important . Start with small amounts of time, even 10 seconds 3 times a day then 4 than 5, then increasing the time, then increasing the pressure. Be careful of thinking that you are tough and can handle the max. Being aggressive and creative is for when you have already put in the work of creating a base that your scar tissues can handle.
Time frames can vary from person to person. Expect a few weeks to a couple of months of daily work to get to a pain-free incision site.
Caution: If you are taking it easy and are flaring up pain or not progressing, other concerns may be in play. Lay off and there are other strategies that can be used. Please ask about ideas for other treatment.
Make sure that you are moving over the tissues under the skin and not rubbing the skin itself when using your fingers.
Good luck with getting incisional pain under control
I agree with everything gabby has said and detailed out for you. I actually did all of that following shoulder reconstruction surgery and I have no scar tissue of note, you can see a white-ish line where the cut was made but it’s 100% smooth, even when pressed on hard.
Another thing to keep in mind is that everyone scars differently, it could be that you form extra or “different” scar tissue than “normal.” If it becomes too much of an issue you may want to also consult a wound doctor for ideas.
oh my god! thankyou!!! why has no neurosurgeon or neurologist ever referred me to this omg!
“…why has no neurosurgeon or neurologist ever referred me to this…”
I’m going to give you what may seems as a rude/arrogant answer to this (well, I considered it to be rude when the arrogant sod of a neuro said it to me).
So here goes.
“I’m a neurologist I deal with the brain. The brain itself has no nerves and therefore it cannot feel pain, so your pain is not actually the brain. Your pain is from the external nerves within the scalp, not the brain, so that’s not my specialization” To say I was a little annoyed with his explanation would be a little understated. I wasn’t blaming him, I was looking for answers, but none were forth coming.
So why has no one referred you? Because that might mean they could be seen as taking responsibility. Am I being cynical? YES. But it comes from personal experience in dealing with these people.
Merl from the Moderator Support Team
I do so hope that this helps you. I know that it definitely resolved scar pain for myself.
Yes, it is unfortunate about all the lousy advice patients receive from the medical people they think should help them. Medical folk have their little packet of info and if it does not apply to your situation then you are out of luck and often blamed for being difficult. I have definitely adopted the attitude of moving on and not taking it personally when someone is unknowledgeable and rude. I still get upset but am always moving on to find people who are able to assist me in my journey towards health. We need to remember that neurosurgeons offer surgery and neurologists offer medication. If different solutions are required, we need to move outside of the medical model that patients hold as sacrosanct. Of course, it does not hurt to ask if they know about these other medical folk. Sometimes they do make referrals and know about other ways of dealing with our symptoms. Not so easy as there is a lot of snake oil!
Hopefully, now that you know about scar management, you can give it a solid go. It is free, no need to take time and effort for an appointment visit, you can go at your own pace, and no ones insinuates that you are malingering. It is win-win in my mind. And, finally, it is never too late to start.
I do agree they do have their ‘little packet of info’ and I for one am quite willing to accept that they may not have the answers, my only wish is that they would admit that they don’t know rather than sending patients off with idea that the predicament they find themselves in is of their own making. Nobody ever chooses this.
I also agree that many patients go to these medicos with an expectation of the dr’s having ALL of the answers, which they do not. They simply cannot know everything. I have previously questioned a neuro and to say the reaction was negative would be a bit of an understatement, being ones own advocate can be a bit of a double edged sword in a way, as some medicos maybe willing to share their knowledge, where some are not so willing and their reactions can be anywhere from blasé to confrontational ie ‘how dare you question my expertise…’
Merl from the Moderator Support Team
that makes total sense haha no one wants to take responsibility these days.
My opinion can be seen as fairly critical of the medical fraternity at times, but it has been my own experiences with them that has given me this opinion, so it is not an uninformed opinion. For 20+yrs I have worked in community services and been an advocate for people with disabilities in this role. My family (By marriage) has had extensive experience with the neuro fraternity with myself and 2 others needing multiple neurosurgeries, one of whom has since passed away from a glioblastoma (Brain cancer). So I’ve seen and experienced the realities of all of these from a few differing angles.
BUT, as negative as some of my comments have been I would like to explain a bit more.
We are talking about the human brain. One of the most complex pieces of equipment known to man. It’s in a sealed unit (our skull) for a reason, to protect it’s delicate architecture. Then along comes a mechanic (surgeon) and opens that sealed unit. Now there’s not a lot of space within the skull, it’s full with grey matter, cerebral spinal fluid and blood. There is a fine balance between these 3, have one out of balance and the results can be catastrophic. So they open us up, move things around and in some cases cut into the grey matter. There MUST be a flow on effect from such surgery. It’s more of a case of how extensive that flow on is. Some can be minimal and as I say some can be catastrophic.
Statistics show that over 55% of neuros have been sued, so to protect themselves, their practises and their insurance premiums the less legal responsibility they have the better. Some premiums can be in excess of $40K/yr and that’s without patients even making a claim. If patients claim then those premiums increase DRAMATICALLY. For this reason alone I believe its fairly obvious why “…no one wants to take responsibility these days.”
I think one of the problems for us the patients is that we can think that a surgeon and a mechanic are fairly similar. They are not. The mechanic works with standard parts and can fix/replace a broken part. Our body’s don’t have standard parts and when it comes to brains there’s no fix/replace. Every brain is wired differently, so what affects one individual in a certain way may have a massive impact for another and I know for myself this is why I’ve been referred to all sorts of other specialists due to symptoms post surgery ie ‘Well, it’s nothing I have done. It could be ‘x’ or it could be ‘y’, let’s send you to specialists in those fields…’ But then when those specialists say “It’s not ‘x’ nor ‘y’. You’ve had brain surgery, so what do you expect?” it can be a little confronting (or it was for me). If my surgeon had said this to me I might have been a little more accepting, but then by making such a comment it could be perceived as them taking responsibility and risking a claim.
It’s a bit of a Catch-22 situation. ‘Damned if you do. Damned if you don’t.’
Merl from the Moderator Support Team