5 Years Post OP and a Concern

[jchinsolo]

Hello,

My name is Jason, I am 5 years post op. When I was diagnosed I did not experience many of the normal symptoms that other people experience such as loss of hearing and headaches. My only problem was that when I entered a dim lighted room it was like someone took a dimmer switch and turn the lights out it only lasted a few seconds. Just a few months ago I started having the migraines that I know most have shortly after surgery. I know I'm different but Im hoping someone can shead some light on this subject.

This November 10th will be 5 years and I will be having an MRI on Tuesday due to the following issues that I am now experiencing. Where the incision was made in my head it is really sore and has been sore for sometime. Is this normal? and also where the surgery spot is it appears that my head has sunk in somewhat for quite sometime that place was puffed out due to fluid but that appears to be gone now.

[leapyrtwins]

Jason -

this is puzzling to me, and not being a doctor, I'm not sure what's going on 

I've never had migraines - either pre or post op - and I'm heading towards my 4 year AN surgery anniversary.

I haven't had my surgical site "puffed out" either.

Once you've had your MRI and your doctor has had time to give you his/her take on things, please update us on your situation.

It will be very valuable to newbies - and us oldies - alike.

Good luck,

Jan

[CHD63]

Hi Jason .....

Adding a welcome to this forum!  Sorry you are having these issues at 5 years out.

Like Jan, I did not have the migraines you describe pre or post-op ..... at least not related to my AN. Many years ago I had migraines, but they had stopped long before the AN was diagnosed.  I have had two retrosigmoid surgeries (one on each side ..... right side for trigeminal neuralgia 16 years ago, left side for AN removal 2 1/2 years ago ..... different doctors, different states).  I also did not have the puffiness at either incision site after the initial swelling subsided.

However, my head is quite sunken in on both sides.  When I push on those spots, it is quite sore, but does not bother me when I do not touch them (right side more sore than left).  I am not a doctor either, so I would certainly advise you to have it checked (which you are doing with the MRI next week).

Please let us know what you find out.

Thoughts and prayers.

Clarice

[Kaybo]

Jason~
Hello!  Although I am not a Dr. and can not specifically comment on the things going on with you, I CAN share my experiences!  I had HORRIBLE headaches before my surgery (for many years - going back to my teens - I had surgery when I was 25) and after the initial healing period had NONE - ever!  THEN at about 6 years out (didn't have to get MRI's after 5), I started having a constant one.  I immediately went to my Dr and he ordered an MRI.  Nothing there...in my case, it was just so much going on in my life...it coincided with a new baby and an almost 4 year old and not enough sleep.  At different times over the years, I have gotten headaches again, had an MRI (just to be safe and it was about time for my peace of mind) but again could always look back and see that something was going on.  I just started having some headaches again and I know that I can directly attribute it to all the stress of moving and how crazy our life has been the last few months - I think I just went & went and now my body is saying NO MORE!  I am not in any way saying that is what is happening with you - yours is more around your scar site, sounds like - mine wasn't.  Also, the "sunk in" spot is VERY normal - if they packed your head with fat, the fat dissolves and you are left with a void.  I remember asking my Dr. about this & him explaining the way it dissolves - of course, I had to ask him "If it dissolves on my head, why doesn't it dissolve on my tummy?"  His reply, "Only YOU would ask that!!  

Don't know if that helped at all..let us know what your Dr. says.

K  

[epc1970]

Hi Jason
I am 2 1/2 years post op with similar symptoms and was just diagnosed with a scar neuroma which is  a mass of nerves near the surgery site that did not regrow correctly due to scar tissue from the surgical incision. Pain will radiate along various pathways throughout the head as a result.   I was literally just diagnosed with this last week. My understanding is that treatment ranges from various injections (botox, steroids etc) along the incision line, medications and surgical intervention called a scar revision. I was diagnosed off of clinical presentation of a small lump just below my incision that appeared two weeks ago. This combined with my pain descriptions lead to this diagnosis from head/neck surgeon. He told me scar neuromas are not uncommon after this type of surgery and that imaging is often inconclusive. In fact, he reviewed my MRI from this past March and saw not signs of anything unusual despite me having pain since about 6 months post surgery. Hope this helps you in some way!

Erin

[Jim Scott]

Hi, Jason - and welcome, although I'm sorry to learn of your ongoing problems at five years post-op. 

I think Erin ('epic1970') may be on to something (possible scar neuroma) but as we often state, we're not doctors and have no ability to 'diagnose' anyone.  I trust the MRI will provide your doctor with the information he needs to properly diagnose the cause of your symptoms and offer a solution.  The 'sunken' spot where the incision was made is normal (I have it).  Although the soreness should have resolved by now (mine has) I have to admit that my incision area is still slightly sensitive so this may not be all that unusual.   

I hope you'll get the answers you're seeking with the MRI scan next week.  Please let us know the results.  Thanks.

Jim

[jchinsolo]

I would like to thank everyone for there words of encouragement and caring about my results, The MRI shows nothing has changed from my last MRI. I have a clean bill of health but still no reason for the soreness that has now disappeared.

[Crazycat]

Jason,

I reached the five year mark this past September. No issues. Like you I had no headaches going into it (but a lot of other things) or coming out of it. I also had a shunt installed in my cranium with a hole drilled through the crown of my forehead—no pain from that either.

My next MRI is scheduled for this Monday, the 8th at Mass General, my Alma mater (I had spent so much time there).

I have noticed with some people that their physical symptoms seem to change over the years as their bodies change and re-adapt to changes imposed by surgery on their bodies. For instance, some will grow out of having headaches over the years after being plagued by them for so long whereas others will suddenly develop them out-of-the-blue without there necessarily being any regrowth. Nerves are like that; they can be very quirky. This is why nerves are referred to as being "insulted" in medical parlance if they are so much as touched or disturbed.

I met a guy on this forum a year or so after my surgery. He was from the area where I live and had the same surgeons at Mass General as I did. His name was also Jason.

I kept in touch with Jason off and on for a couple of years after his surgery. He was plagued with terrible headaches after his treatment even though his AN was smaller than mine and was not complicated with hydrocephalus (fluid build-up and pressure) like I had. His headaches were so bad that he complained to me that if he had known that he'd have to suffer the way he was after surgery, he never would have gone through with it. He was miserable.

Then, suddenly, his headaches just went away and never came back. It was like the clouds had cleared and he finally healed.

I couldn't tell you how he has been recently as I haven't spoken to him in three years or so.