Symptoms 4 months after clipping surgery and fears of clip slip

Hi all!

I had a craniotomy and clipping a little over 4 months ago. I had an unruptured aneurysm on the internal carotid artery, ophthalmic segment, so behind my left eye and pretty much in the middle of my head slightly to the left.

I found the first 3 months REALLY hard and progress was slow, but then I had about a month where I felt great. Unfortunately in the past week I’ve had symptoms pop up including:

  • Irritation and what feels like (what I imagine) nerve pain feels like, above and behind the eye on the side the aneurysm was clipped. I know the clip is pretty much right in the middle of my head but the pain and irritation seems to spread from the middle all the way out to my temple below the incision site;
  • Numbness in my forehead above the left eye. This seems to come more from below the incision site but spreads to most of the left side of my forehead. At one point my left eyelid was a little numb too, but it didn’t droop and my vision has been fine;
  • Some mild swelling at the incision site which I hadn’t noticed before;
  • Itchy scalp;
  • Stiff neck for a few hours;
  • Mild nausea;
  • Ringing in ear on side of aneurysm (although that’s been a constant since surgery); and
  • Feeling generally tired, slow, overwhelmed and out of it (again have had this for the first 3 months and it was dreadful but then had a month where it was gone and I felt great again).
  • Temporary swelling of the muscles on my left temple, especially when I eat something that requires a bit of chewing.

Just wondering if anyone else has had this 4 months out? I know we are told 3 months is the recovery window but I feel like I read a lot about things still being rough for a good while longer.

If this stuff is all just normal recovery from a big procedure I am happy to suck it up but my biggest fear is that I have clip slippage. I’m a very active person and jog 3-4 times a week, as well as working on houses which takes lots of lifting, exertion etc. I don’t know if it’s a thing that happens but I imagine when I work hard my blood pressure gets high and pushes on that clip (I understand that might sound a bit crazy).

For what it’s worth I had another CT at the end of March, about 3 months after the clipping and everything was fine and where it should be. I also know I can’t keep having CTs every time I have a symptom or I’ll give myself even bigger problems from the radiation.

Really interested to hear if anyone has any thoughts - this forum is a lifesaver.

Thanks in advance

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I understand why you don’t want another CT scan, I’ve had way too much radiation in my opinion. No one seems to be able to tell me how much though, which makes matters worse. Don’t they keep a record of the settings?

It sounds like you had a great scan and that’s always good news! Merl, in my opinion is the expert on craniotomy post symptoms as he’s had a lot of them. I haven’t. Merl is part of our @ModSupport team and I’m not sure when he comes on next as he and Ms Sharon share the load of being on all the Ben’s Friends support groups. We also have many members that have had a craniotomy and I’m hoping that they’ll come and share their experiences. Unfortunately the only thing I can suggest is to reach out to your surgeon and see what they say. Be patient, they will come…

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Hey Curious,
My name is Merl. As @Moltroub states, I’m a member of the modsupport Team here on Ben’s Friends.
I too am a neuro patient and, yes, I’ve had to deal with all of those same symptoms.

When they do a craniotomy and cut the scalp, they often severe the nerves in the face and scalp and this can cause some ‘weird’ facial sensation and pain. There are 12 cranial nerves, and the likelihood that none of them have been affected in some way is highly unlikely.

These cranial nerves branch out over the entire skull, like a tree branch. any irritation to a branch can affect any part of that entire branch and not just at the point of irritation. Now, when the scalp is cut, cutting through the nerve, this disrupts the messages from that branch of nerves altogether, making it feel numb. As these cut nerves try to re-locate and reconnect themselves, they send out some intense sensations. SUPER intense. I could not believe the intensity. This was long after the wound itself had healed. I even turned up at A&E as I thought there was something terribly wrong. Seems it’s normal.

I’ve required multiple neurosurgeries and none of my recoveries have been the same. So, even trying to compare for myself is impossible. My last major operation back in '13 and still today ‘normal’ sensation hasn’t returned to that side of my head. Don’t get me wrong here the intense scalp discomfort has reduced, but it doesn’t feel like ‘normal’. Initially, that sensitivity felt like someone dragging a live 240volt cable over my scalp. I touched it with a hair comb, once, OMG, just WOW intense. I never did that again.

That thing called ‘Recovery’ is not a straight line, I’ve often said:

     Some days I could leap a tall building in a single bound
     But then,
     Some days I'm lucky to be able to even crawl out of bed

And managing it all is beyond exhausting, it sucks the energy straight out of me in a flash. Some days a task can be easy, but then some days that same task can be overwhelming. I have learnt I have to be super flexible to manage it all, to manage me. If I ignore it all and just push on through the symptoms, they increase and INCREASE and INCREASE and my body tells me “Lay down or I’ll put you down” if I don’t listen it puts me down HARD and I can find myself laid up in a dark silent room for a couple of days, to recover.

If anybody ever tells you the recovery is easy or simple, they have never been in this situation. We know the struggles because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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Thanks Merl, really appreciate such a thorough and inspiring response :slight_smile:

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Hello Curious,

Your craniotomy/clipping sounds very similar to mine. I had an unruptured craniotomy for a 3 cm AVM aneurysm in the same area as you and my optic nerve of my left eye was attached to the aneurysm. Now, this was 10 years ago this December. The surgeon was able to scrape the aneurysm free from my left eye, which left me with a ‘lazy eye’ and (but at least I have vision in both eyes…he could have severed it). I had to retrain the left eye and it eventually focused with the other eye about 6 months post surgery. However, for quite some time I had issues/ soreness/strain with the muscle behind my left eyebrow/eye (I think it was the 3rd cranial) at the end of a day or if I looked up high or far left or right. That went on for some time and still upon occasion if feels fatigued but not often. I had a lot of disequilibrium (some from the monovision), but that has resolved mostly. The head jolts you feel are the nerves growing back together in your scalp and that should resolve but may take a little over a year to complete. The numbness is normal too but the area you are numb should decrease. I still have numbness in my upper eyelid and scalp. I have a lot more skin sensation on my forehead though than I did then. It still feels numb/weird when my beautician combs over that area. I did not expect any psychological affects from this surgery, but did have quite a few. I was extremely sensitive to sound, smell, visual stimuli and had a lot of anger outbursts, especially when frustrated with being overstimulated while in a store or business. I never showed anger and was always very even keeled prior. My processing time, concentration, ect. was affected and decreased. I got lost on familiar driving routes. My anxiety increased greatly. I ended up retiring early on disability due to these things. None of these things are as severe now, but then I think I have adapted to a new normal and avoid some things. Hopefully, my story helps you in knowing that most things you mentioned are normal for now and will improve with time, but you are likely to have a new normal for yourself that you may not have anticipated overall.

Best,
Julie

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Hey Julie

Thanks so much for this response - it is beyond helpful and reassuring that this is all normal. Your point about being overstimulated in a store or business was unbelievably relatable - I find when I am in a big grocery store or similar I really start to struggle and that manifests itself in anxiety and I have to leave.

Also can really relate to the point about issues manifesting at the end of the day. In my case, my vision in my left eye is good for most of the day, but at night when I’m tired if I close my right eye I get vertical double vision in my left eye which I’ve never had before.

Can I please check, did you have a stiff neck at all? I’ve been getting that recently and it’s driving me crazy.

Thanks again :slight_smile:

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Hello Curious,

I had a clip in the Circle of Willis, which is close to the center of my brain for a 4-5 mm Annie on the right side. Your symptoms or reactions to the surgery seem similar to what I experienced. I was instructed not to lift anything over 10 lbs. Nearly every time I try to lift more than that I have similar symptoms to what you described. I have found it important to follow the surgeon’s instructions to avoid trips to ER. They have proven valuable to having a better life. I hope this helps. Take care!

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Merl,

Good explanation! My body too is now in charge of how much I can do. If I don’t listen I can be in trouble! Thanks for sharing.

Jj

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Jules,

Thank you for sharing. My husband doesn’t understand why I have trouble with routine routes. I thought it was just me. I also experience sudden burst of anger when tired or frustrated. I quit going to the grocery store for the most part, my husband handles that now.

My surgery was on the right side of my brain and near the temple is still partially numb. If I get too hot or tired the temple swells but reduces after rest and cooling down.

I have several side effects from where the neurotransmitters don’t align properly but overall feel blessed to be a survivor. I appreciate your comments. I’m in Ohio too.

Take care,
Jj

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Hey SeeJ! Thanks so much for the response, it’s so helpful to hear from other people about their experiences.

Was that lifting limit a permanent thing??
It’s interesting as my neuro told me I’m right to exercise as much as I want and do things like weightlifting. I hadn’t thought lifting might trigger symptoms, I might trial seeing how it impacts me :slight_smile:

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Hi,

I’ve had 2 craniotomies. 2 different aneurysms in the anterior communicating artery. Does your incision go from the top center of your forehead down past your temple to about your ear? I have that incision/s. I found out after the 1st clipping that they cut through my jaw muscles. I thought someone had just stood on my jaw while doing the surgery. I could hardly eat/chew for weeks!!

My scalp, forehead and part of my face was numb for a long time after both surgeries. After that wore off pain set in. The chronic pain happened after the 1st craniotomy. We have no idea why. And it didnt go away after the 2nd surgery either. I have 2 to 3 differents types of pain, or head hurts as i call them. They’re not headaches really, its pain near and around the sugical site and incision. My cranio sacral therapist said that plastic surgeons should be the one to close up brain surgeries. There are so many things that can/will go wrong when putting everything back together.

Don’t get me wrong, I’m beyond happy that I’m still here…I just wish I didn’t have the pain and cognitive deficiencies that I have now.

My clippings were about 10 years apart. The technology difference from 2006 to 2017 was unbelievable. So much had changed. And some things stayed the same. During the 2nd surgery, my surgeon also took out part of the bone at my eyebrow and went in a packed the area of the AcomA with a spun material. The packing would hopefully help if I had another aneurysm or rupture. So she opened me up in two different places. I have so many skull flap plates and screws!!

I’ve been very lucky! I was misdiagnosed and finally got help 8 days after my rupture. Double vision saved my life. Well, my ophthalmologist saved my life. I went to see him about the double vision. He did some tests and sent me to the ER and called the neurologist on call and fought for me to be admitted so I could get an MRI immediately.

I had 2 coilings with that 1st aneurysm. It ruptured so coiling was done in 2001 and again in 2002. I don’t have a complete circle of willis. I have a semicircle. One part ends at the AcomA. There’s a T and the blood is forcing aneurysms to grow. Since 2001 I’ve had over 20 neuro angiograms and umpteen CTA scans. I now have one or the other every other year.

I had to have the 1st aneurysm clipped in 2006. The coils were being forced into the head of the aneurysm and there was a large residual neck. My surgeon told my spouse after the surgery that the coils had gone through the head of the aneurysm and they were embedded in brain tissue, so he left them there. It would cause more brain damage to remove them.

Anyway, both surgeries were different and yet a lot alike. I had different surgeons and the medical technology was different too. Between the 2 surgeries I found out I have Sarcoidosis. So that hasn’t helped!!

I know I’ve digressed. That happens a lot. Ooohhh…when I was getting ready for the 1st surgery, my surgeons nurse warned me that my brain was going to be mad after the surgery so warn everyone ahead of time. Warn your family and friends that you might say things you wouldn’t normally say. Well, she got that right!! I cussed my mother out for talking too much!! I’ve never said anything remotely like that ever. My Dad was a preacher!! I didn’t know I knew a lot of the words coming from my mouth!! My Mom forgave me and we laugh about it.

So your brain is still recuperating. I was told sleep was the best thing for a mad brain. I still get agitated when I’m tired. Or when something gets changed and it’s a surprise. That throws me out of kilter. I have aphasia, I now lack visual spacial abilities, I don’t have much impulse control, memory loss-- long and short term, fatigue and more stuff than i can remember. I have had 2 cognitive impairment tests. I thing that’s what they’re called. My neuropsychologist gave me the tests. My IQ dropped about 25 points.

I’ve been on this “ride” for over 23 years. I had to retire early. I couldn’t do my job any longer. I loved what I did for work. I could’ve worked into my 70’s. I retired at 49. I had my 1st surgery when i was 44. The 2nd at 54. After the 1st surgery I was back to work full-time after 4 weeks. (After two weeks I was working 20 hours a week.) After a month or so after going back full-time it was getting harder and harder. I kept working for 5 years. I was doing less and less and working longer hours to try and keep up. So eventually I had to retire.

And I’m very lucky.

Good luck to you and I hope things settle down for you. Rest as much as you can. I didn’t do enough of that the 1st time. Take care and sorry this is so discombobulated!!

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It might be because I had problems with my neck too. I can’t remember, but lifting does seem to trigger some of my symptoms we discussed.
Jj

Hey @SeeJ ,
I found getting others to comprehend the fact that my body is calling ‘Timeout’ difficult. I had to listen to my body. There is no set time. There is no precursor for me, it’s often like a kick to the back of the skull and if that’s the sign I need to stop, NOW. This was one reason I had to end working. I needed to be aware of my environment and ready to act, but when my concentration was on me and my DAMN head, that placed others at risk.

As I’ve said to others " I can push my body, push my limits to complete the task, but there’s always a cost to pay, usually in agony" I have to weigh up the cost vs benefit. Am I prepared to pay the cost?

Merl

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