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Traumatic Neuroma After Brain Surgery
Hello.
I'm looking for information regarding the treatment of a traumatic neuroma after a craniotomy to remove a benign mass from the temporal lobe.
are there permanent options other than surgery to remove the mass on the nerves?
what is surgery and recovery time like?
I am seeing a neurosurgeon for a consultation next week, but I want to educate myself so I know what questions to ask during my appointment.
I'm looking for information regarding the treatment of a traumatic neuroma after a craniotomy to remove a benign mass from the temporal lobe.
are there permanent options other than surgery to remove the mass on the nerves?
what is surgery and recovery time like?
I am seeing a neurosurgeon for a consultation next week, but I want to educate myself so I know what questions to ask during my appointment.
New Development:
Following the strange pain and weird sensations I incurred while massaging last Friday, I've also had TERRIBLE dry mouth. I went to my GP and he referred me back to the neurologist. I talked to the charge nurse at my neurologist's office about the confusion regarding my diagnosis. Her first question/statement was, "I see the surgeon wants to try a more conservative approach first." So, she clarified the diagnosis as: scar tissue neuroma. I told her my surgeon suspects it's the muscle and when we met he didn't mention the neuroma. So that's where I'm at RIGHT NOW. She's informing my doctor(s) about the dry mouth and intermittent ear pain and I guess I'll figure it out from there. :/
Following the strange pain and weird sensations I incurred while massaging last Friday, I've also had TERRIBLE dry mouth. I went to my GP and he referred me back to the neurologist. I talked to the charge nurse at my neurologist's office about the confusion regarding my diagnosis. Her first question/statement was, "I see the surgeon wants to try a more conservative approach first." So, she clarified the diagnosis as: scar tissue neuroma. I told her my surgeon suspects it's the muscle and when we met he didn't mention the neuroma. So that's where I'm at RIGHT NOW. She's informing my doctor(s) about the dry mouth and intermittent ear pain and I guess I'll figure it out from there. :/
If no other scan has *gone wild* then odds are against scar tissue you would think - so would seek another opinion. It could be something completely benign, but pain is so not fun, it needs to be looked at.
Nice that your neuro docs can read films - mine ugh...
Nice that your neuro docs can read films - mine ugh...
I know it was my neurologist who originally read my films and found my tumour, and he's shown me different things on all my MRIs, so I hope between the two of them they know what they're looking at! haha
I don't really have a history of scarring. This was my only surgery, other than my wisdom teeth, so it's hard to gauge. Any other superficial injury I've had has resulted in atrophic or at least just not raised scarring.
I haven't started the antidepressant/chronic pain med yet, but I as far as i can tell the massaging hasn't been helping just yet. :/
I'm at a 4.5 on the pain/discomfort scale today. It actually seems to feel different since that weird thing the other night. It seems like now my ear has been aching along with my scalp.
I'm trying the surgeon's recommendations. He said that if conditions didn't improve in a few weeks to call, so I guess that's what I'll do. Hopefully I'll figure something out!
I don't really have a history of scarring. This was my only surgery, other than my wisdom teeth, so it's hard to gauge. Any other superficial injury I've had has resulted in atrophic or at least just not raised scarring.
I haven't started the antidepressant/chronic pain med yet, but I as far as i can tell the massaging hasn't been helping just yet. :/
I'm at a 4.5 on the pain/discomfort scale today. It actually seems to feel different since that weird thing the other night. It seems like now my ear has been aching along with my scalp.
I'm trying the surgeon's recommendations. He said that if conditions didn't improve in a few weeks to call, so I guess that's what I'll do. Hopefully I'll figure something out!
In my experience... few neurologists know how to read MRIs - so I have not run into anyone that would even look at a film - they would look at the report only! The surgeons typically read films even better than radiologists - they have to know the areas better since they are doing work there. But your neuros may be the exception, not the rule.
It is very confusing. Scar tissue is very uncomfortable. One way is do you get large scars in other areas? I know all my scars are large, so knowing that another one is large is not a surprise - but if you only have one, perhaps that is not correct and you should think twice about the diagnosis. I see nothing wrong in talking to your doctors - and you need to get to the bottom on this - if nothing else, you need to address the pain. If it is a hypertrophic scar they often can address with injections - can they send you to a dermotologist or plastic surgeon to address the pain?
It is very confusing. Scar tissue is very uncomfortable. One way is do you get large scars in other areas? I know all my scars are large, so knowing that another one is large is not a surprise - but if you only have one, perhaps that is not correct and you should think twice about the diagnosis. I see nothing wrong in talking to your doctors - and you need to get to the bottom on this - if nothing else, you need to address the pain. If it is a hypertrophic scar they often can address with injections - can they send you to a dermotologist or plastic surgeon to address the pain?
Oh I think I noticed the pain like, 6 months or so out of surgery.
Also, I was just massaging the area as per my surgeon's recommendation. I hit a really sensitive spot that seemed to shift. When it did, I had TERRIBLE sudden pain all through my inner ear and the side of my head!! Shortly after the pain died down a little, my inner ear felt ice cold, and wet. I even set my finger inside to feel for wax or water! I'm not sure what's normal anymore, so naturally this really freaked me out. Now, the area surrounding my incision feels taught and ..... strange. I can't explain it, but I know it doesn't feel the same way! I feel nauseous! the pain was so sudden, sharp, and deep that I started shaking and got a terrible hot flash as well as suddenly sick to my stomach.
This whole ordeal has been confusing. The two neurologists looked at my MRI and made a diagnosis, and then the surgeon didn't even address this diagnosis and does his own thing. I do what he tells me and now I'm afraid something has gone horrible awry with the nerves/scar tissue whatever in my scalp.
I'm considering stopping at my neurologist's office tomorrow and talking to either/both of them to see if they can tell me EXACTLY what they recommend/diagnose.
I just don't know what to do anymore :(
Also, I was just massaging the area as per my surgeon's recommendation. I hit a really sensitive spot that seemed to shift. When it did, I had TERRIBLE sudden pain all through my inner ear and the side of my head!! Shortly after the pain died down a little, my inner ear felt ice cold, and wet. I even set my finger inside to feel for wax or water! I'm not sure what's normal anymore, so naturally this really freaked me out. Now, the area surrounding my incision feels taught and ..... strange. I can't explain it, but I know it doesn't feel the same way! I feel nauseous! the pain was so sudden, sharp, and deep that I started shaking and got a terrible hot flash as well as suddenly sick to my stomach.
This whole ordeal has been confusing. The two neurologists looked at my MRI and made a diagnosis, and then the surgeon didn't even address this diagnosis and does his own thing. I do what he tells me and now I'm afraid something has gone horrible awry with the nerves/scar tissue whatever in my scalp.
I'm considering stopping at my neurologist's office tomorrow and talking to either/both of them to see if they can tell me EXACTLY what they recommend/diagnose.
I just don't know what to do anymore :(
How soon after surgery did this develop? I know I get hypertrophic scars - and so my scars after my surgeries were very painful as well - but it was pretty quickly after the surgery.
Find someone to trust. They are not all bad...
Find someone to trust. They are not all bad...
After doing some of my own reading and research, I suspect it may be a keloid. It seems to be the only thing that fits all my symptoms! It hurts and itches and it's definitely raised. I mean, i could go to a doctor to confirm, but I'm not sure I trust them right now!
I don't like the attitude of the surgeon - especially if he was the guy that went in before... they don't like to know that something was left behind etc. The whole anit-depressant thing for pain makes me a bit angry as it totally undermines any feelings you have and while it may or may not be scar, I would seek out a third independent opinion with someone who will treat you nicer.
Rubbing scar tissue - er - that has never made mine go away!
It is never easy...
Rubbing scar tissue - er - that has never made mine go away!
It is never easy...
So, I saw my neurosurgeon today. Everyone I see tells me something different! The neurologist said neuroma and now my surgeon says it's just scar tissue in my muscle and I should massage it and use icy hot!
It gets frustrating when everyone tells me something different. I can feel a nodule along my incision site, I know that much. I know that it hurts, too. It's tender to the touch and seems to ache and fire off random pain at all times of the day!
The worst thing is that my surgeon came off condescending, as well. I just want help. I just want to not be in pain anymore. He actually prescribed me some sort of anti-depressant and just told me to rub my head. I think I would have more faith in these docs if they weren't all telling me something different.
I'm glad I'm not trying to fit surgery into my schedule, but this is not the solution I was expecting. I'm considering a second surgical opinion since everyone seems to diagnose something else.
I thought I had an answer, but I guess not. :/
It gets frustrating when everyone tells me something different. I can feel a nodule along my incision site, I know that much. I know that it hurts, too. It's tender to the touch and seems to ache and fire off random pain at all times of the day!
The worst thing is that my surgeon came off condescending, as well. I just want help. I just want to not be in pain anymore. He actually prescribed me some sort of anti-depressant and just told me to rub my head. I think I would have more faith in these docs if they weren't all telling me something different.
I'm glad I'm not trying to fit surgery into my schedule, but this is not the solution I was expecting. I'm considering a second surgical opinion since everyone seems to diagnose something else.
I thought I had an answer, but I guess not. :/
In general - and this is just a layman talking - deeper gets more complex because of the nerves and blood vessels that are hidden in the center so if it is more on the outer limits so to speak, I hope you have a much easier recovery!
So sorry this is surgery #2!
Have they evaluated if scar tissue has gone crazy and wrapped around anything? I know I scar badly...
Pain bites - so I hope you get the relief you need soon. Do keep us posted and let us know how it goes.
So sorry this is surgery #2!
Have they evaluated if scar tissue has gone crazy and wrapped around anything? I know I scar badly...
Pain bites - so I hope you get the relief you need soon. Do keep us posted and let us know how it goes.
Thanks for the response!
Luckily my consultation on Tuesday is with the surgeon that did my lobectomy, and he just happens to be the head of neurosurgery.
*whew*! So that helps, haha!
I'm not sure of the severity of the location, but it's along the scar tissue of my original incision so I know they've been there before. I just know that this strange, constant, unbearable pain that it's causing needs to go!
I can feel the mass on my scalp, so I'm hoping surgery won't be too invasive, but I guess I won't know much until Tuesday.
Ideally, I'd like to get it done during my Christmas break so I don't have to take much time off school because I want to graduate in May!
Luckily my consultation on Tuesday is with the surgeon that did my lobectomy, and he just happens to be the head of neurosurgery.
*whew*! So that helps, haha!
I'm not sure of the severity of the location, but it's along the scar tissue of my original incision so I know they've been there before. I just know that this strange, constant, unbearable pain that it's causing needs to go!
I can feel the mass on my scalp, so I'm hoping surgery won't be too invasive, but I guess I won't know much until Tuesday.
Ideally, I'd like to get it done during my Christmas break so I don't have to take much time off school because I want to graduate in May!
A lot of things depend on location location location - it is a lot like real estate in that case. So If you are near critical blood vessels or the nerve is a critical nerve like an optic nerve (not that you want to lose any nerve...), surgical skill is key.
Of course, there can be other options other than surgery but it can all depend on the lesion, location and what they know in the past and what treatments work the best. Some times you need a combination of treatments - so other options can be ones you hear for cancer even though your lesion is benign - radiation (like gamma knife, cyber knife or proton beam) or rarely even some chemo.
Recovery can vary based on your symptoms and current health - if you are very healthy now and the lesion is small and the surgery is in an easy location, you may have an easy/easier recovery. A more intensive mass may require a longer recovery. Do be easy on yourself. Even just having anesthesia is enough to throw people off for a while and toss in brain surgery after that - it takes a while to get back to normal.
Surgery again will vary - some can be endoscopic and some will be a open craniotomy.
It can help to bring an CD of your MRI - have the surgeon point out your lesion. Also get several different opinions. Experience helps here and you want to be comfortable with the doctor, hospital and care.
Of course, there can be other options other than surgery but it can all depend on the lesion, location and what they know in the past and what treatments work the best. Some times you need a combination of treatments - so other options can be ones you hear for cancer even though your lesion is benign - radiation (like gamma knife, cyber knife or proton beam) or rarely even some chemo.
Recovery can vary based on your symptoms and current health - if you are very healthy now and the lesion is small and the surgery is in an easy location, you may have an easy/easier recovery. A more intensive mass may require a longer recovery. Do be easy on yourself. Even just having anesthesia is enough to throw people off for a while and toss in brain surgery after that - it takes a while to get back to normal.
Surgery again will vary - some can be endoscopic and some will be a open craniotomy.
It can help to bring an CD of your MRI - have the surgeon point out your lesion. Also get several different opinions. Experience helps here and you want to be comfortable with the doctor, hospital and care.
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