Hello. It’s been a few years since I’ve written or interacted in this space, though I log in from time to time to read other people’s stories. I think I tried to distance myself from what happened, as a means of coping with the ptsd I suffered afterwards.
(Recap: Rupture 11 years ago,coiled, rehab, several bouts of meningitis, memory loss, migraines daily)
Anyway, what brought me here today is to ask the BAF community about a specific issue I’ve been having as of late: my surgical scar has been painful to touch, even graze over and my hair is thinning out surrounding it. Oh, and there appears to be a hard knot forming on it. Is this normal?
I’ve made an emergency appointment for next week, but I am wondering if anyone else has experience this? (I thank you in advance for reading this)
Hey Shay,
I’ve had a few neurosurgeries over the years and have scarring all over my scalp. For me I find the weather plays a huge role in the sensitivity of my scalp. When it’s cold everything restricts and I can feel the scars more as my scalp restricts. Initially, post surgery, any touch of the wound itself was awfully sensitive. I also found the sensation around the area ‘different’ but that was explained to me by the surgeon that in cutting the scalp nerves have been severed, disrupting the signal. My last major surgery was in '13 and although the sensation is not back to normal, that absolutely awful sensation has reduced.
One of my surgeries was a craniotomy and I have a few plates and screws holding my skull together, I also have a shunt, so I have humps and lumps and hollows all over my head. I doubt I’d notice a new one I have however noticed that the plates/screws have become more pronounced over time. But if as you say your surgery was 11years ago then everything ‘should’ have settled by now and if that ‘painful to touch’ sensation is not normal or is something new, getting it checked out would definitely be my recommendation.
Post surgery there can be a condition known as ‘adhesion’. In very basic terms the skin of the scalp, usually outside of the body, can grab a hold of the skull. As everything else around it grows and bonds normally, the bond on to the scalp also grows. This can be very painful as it pulls with movement.
My hair has thinned too (almost vanished more like ) but I haven’t noticed change in sensation over the scars due to the reduction.
Please do let us know what the Dr thinks.
Merl from the Modsupport Team
Glad to see you posting! I’ve not had a craniotomy so no answers for you there. I did have lumbar surgery and about five or six years out it developed a painful long thin lump where he cut open my back to get to my spine that kept widening. It was concerning enough to the Neurologist to have a complete spinal MRI/A done. It was scar tissue that continued to form. I had a lot of stretches added to my retinue and massage. I think the massage helped the most. Hopefully it will be as simple a fix as mine was…
Thank you so much for responding with detail. A lot of what you say makes me feel better, simply due to hearing my symptoms in other person who is thriving.
So far, I have one more visit (with the surgeon who did my clipping) before I get a final stamp, but they (my Neurologists) are saying I have a Neuroma. There is a lump forming on my scar that’s basically a clump of nerve tissue that are fusing together. It’s randomly painful but I have spells where I don’t feel it at all, minus the hard knot.
The last appointment is about treatment options. If the pain becomes too unbearable, they want to inject it with some sort of anesthesia. I would have to get them every few months or years to keep it away.
If the knot grows, then they will enter and try to “untangle” them, which is one complication and something that I have to consider it’s value of.
I do not want my brain cut open - anymore - ever - if I can help it. I already feel like I cheated death and I do not wish to test the waters, if that makes sense.
I’ll do the injection. It’s painful at the point of entry but should grant me some relief. The hair? Meh. I’ll get over it. I’ve been lucky to have 40 years of full hair.
I can do without it if it means I get to watch my daughters grow, you know?
My energy comes off as calm and collected but secretly my nerves are shot and I cry when alone.’
I am not sure why. I really thought I was over the trauma of it all. It’s been so long. But this pain seems to be like ptsd, or something
I, too, am going to try a more natural route, as well.
I booked an appointment for acupuncture because my new Neuro is young and off the record thinks it does wonders for brain issues.
(I kinda think that young doctors are willing to try new things in ways my older ones are not. They’re all “grumble grumble, let’s get you on meds, grumble grumble, let’s open your head” <a portrait of
my doctor, of course!)
Yes, yes and yes. I have what I call ‘My masks’, I put my happy mask on and all is fine (on the outside). I can fool most people, most of the time. My wife can see through my masks, I can’t fool her. I can tell her I’m fine, but she tells me straight “Look at your eyes, you’re not fine at all…” DAMN IT. I’m a bit like a duck floating on a lake, above the water everything looks calm and serene. But under the water I’m paddling as fast as I can just to keep afloat.
Well, when you’re over the trauma of it all… …can you please tell me how. The littlest thing, the littlest trigger can take me back. And it is exactly like a PTSD, every ache, every pain and I’m asking ‘Is this it?’ It’s like walking on eggshells, just waiting for the next one to break. For me it’s been years but every day I have reminders. So yea, when you are over it all, you will have to tell me how.
I get what you mean that it seems like the older ones want to pass us off to more drugs. Unfortunately I made a poor decision probably when I told NSICU to stop the morphine drip. I thought it was the morphine that was making it difficult for me to understand what was going on:scream:
Sometimes the medications are needed, sometimes they’re just using what I call the “shotgun method”. When I think that’s happening, I don’t mind questioning them. I really want to know why they think it will work for me, as an individual and not just because it worked on someone else. Ludicrous, I know since medication is closely followed and has statistics to support their use, it’s the side effects I’m probably most concerned with as it seems I get a bunch of them
I am struggling to ask young Sergey (Neuro NP) to put me on something until we can get moved in to the new house. I see him next week so I’ll be struggling with it until then I presume. My temper is getting the best of me, BH and our wonderful Handyman has grounded me😂. Apparently BH was told that I’m difficult to understand. I know this sounds like I’m on my pity pot…but why is it people who have an accent different from the American South can understand me just fine? Oh boy did I get off topic…
You say humps and lumps and hollows. I have this large (what I call) a hole right above my shunt. I’m presuming that what I call a hole is the hollows you are speaking of. I came here tonight to find out if that is normal but after reading your post I suppose it is. I’d love to know why that happens and should I be concerned… I don’t know.
After several scans and visits, I am confidant that it is normal, though the severity of them changes with each person. My neuro is going to monitor them (neuromas) over the next few months to see how much they change, outwardly, during that time.
The hollows are simply the dents that are caused from neuromas being formed. While I have lost hair in the hollows, and at times the lumps are sensitive to touch, as long as they don’t grow too much larger, they say I shouldn’t worry.
(However, “not worrying” is always easier said than done, given the circumstances )
Whew. “Is this it” - could be the name of my memoir at this point. I’ve learned to just quietly ask myself that question these days in spite of what’s happening around me. It’s like my own secret hysteria.
Good or bad, I have found some semblance of peace with the prospect of “it”, the more times I’ve had to, either, question the circumstance or come close to the possibility (twice, since “Annie” - my name for my forever passenger - and I have become a pair, I’ve had severe meningitis, which mimics the effects of it so much so, it’s terrifying) as the change of seasons seems to trigger something in my brain.
Yes, that is one of the ‘holes’ I’m talking about, although that particular ‘hole’ is still covered by my hair, so it can’t actually be seen. The hole above the shunt valve is where the shunt tubing enters the skull and is not something to be too concerned about.
The other ‘holes’ I mentioned are from the craniotomy, which is on the crown of my skull. I also have an indent in my forehead where they drilled a hole to insert a pressure gauge to my measure my ICP (Intracranial pressure). The hair on the crown region is much thinner/non-existent and those holes are much more prominent. Part of the reason for their prominence is that I have plates and screws holding the skull cap in place, which makes the holes seem even bigger. When people can see my scalp some of the looks I get are of shock and horror, I now wear a baseball cap to hide it all.
And I think that’s about as good as it gets. We have to learn to manage the best way we can.
Initially, I was ‘walking on eggshells’. Every ache every pain and I’m questioning myself, but over time I have learnt my signs. For me headaches, even extreme headaches are a daily battle and I mean every day. At times I also get visual disturbances and tingles in my hands and feet, but if I get all 3 and there seems to be a progression of intensity, that’s MY sign I need to act and seek medical attention.
I have gone to hospital with all 3 symptoms only for the medicos to send me home after doing a scan. But by the same accord I’ve turned up at hospital, them do a scan and keep me in for surgery the following day. They love to say ‘Ohh, but don’t worry…’ but they’re not the ones trying to manage it all. Personally, I think they underestimate or try to minimise the emotional impact, but as soon as they say ‘Don’t Worry’ I want to tell them ‘Don’t Worry???..TOO LATE!!!’ I’m already miles down that path. It is very easy to stand on the outside and say, ‘Don’t worry’. If they EVER get a view from this side, they might see just how impossible that actually is.
Wow Merl, I’ve only had one or two MDs tell me not to worry…Like you I had to learn what would send me to the ER. I went one day, was given shots and told if the symptoms didn’t stop come the next day, so in I went only to be told by a doctor I’d never met that I was drug seeking. Really? I believe they just gave me Benadryl, but I’m unsure. BH stood up and gave him the what for but good!
I had one MD, Dr. Walker in NSICU that was not only a great doctor for me, she told me one day that she had been in NSICU as a patient. She had a different approach than most of the others and it helped, a lot. It is too bad that more doctors don’t approach brain issues like her, she could teach them a thing or two!
I have however noticed that the plates/screws have become more pronounced over time. But if as you say your surgery was 11years ago then everything ‘should’ have settled by now and if that ‘painful to touch’ sensation is not normal or is something new, getting it checked out would definitely be my recommendation.
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