Hello! This is my first post here. I’m a little over six months out from a craniotomy with clipping of a left ophthalmic artery aneurysm. Outside of some complications from the IV and arterial line after surgery my initial recovery was a breeze. I was back at work within 5 weeks and traveling within 8. Then around the three month mark I started having some pain near the surgical site and around my eye. I did have an MRI noncontrast at the time which was normal, however without contrast it’s not super helpful. Now since August I’ve been having off and on pain to the face and head. It feels more like nerve pain and can be made worse with touch to my face and scalp, however some mornings I do wake up with a pretty significant generalized headache. I’ve also veen experiencing some sinus discomfort onbthat side. The kicker is that it all resolves with just Tylenol. That’s the only thing that has kept me out of the ER. I guess I’m just looking to see if anyone else has had post op symptoms that started three months later and if it ever got better. Trying to avoid scanning my head a million of times. Also, the most complicating factor is thay we moved across the country after my surgery. Dr. Connolly at New York Presbyterian did my surgery and we are now in California. I don’t have a Neuro Surgeon here yet. Any west coast recommendations for a great surgeon?
Thanks for posting! I was trying to figure out the logistics of having surgery across the country and you certainly answered that as well! Not sure what part of California you are in, Southern California has UC Los Angeles (UCLA)Medical Center and UCSD (San Diego) and Northern California has UCSF (San Francisco) all of which I understand are highly rated. We have a lot of members who have gone to UCSF and UCLA, it’s really dependent on where you reside and which is the closest large city to you. I went to college at Cal State Chico which is well north of Sacramento and folks with serious brain traumas were taken to UCSF and not Sac back in the late 70’s and early ‘80’s.
We have many members that have had craniotomy procedures, I’m not one of them. I hope someone replies who has had one. Merl has had several and he can answer better than I. He’s in Australia so be patient due to the time difference. He is also part of the trio that makes up @ModSupport so he visits all the other support groups of Ben’s Friends. Whilst you are waiting you can use our search function and type in “craniotomy” to see what comes up, there is a lot.
Welcome! My name is Suzanne and I too am a patient of Dr. Connelly at New York Presbyterian Hospital. He and Dr Levine saved my life almost two years ago with a Clipping on the Anterior ICA that was a wide neck with “blister or sister” aneurysms along for the ride.
I traveled from South Carolina where I live to NYC to have these two world class endovascular surgeons perform a very complicated and live saving procedure.
I am about to fly to NYC for my second year post op checkup.
I will continue to fly from SC to NYC as long as I can. I trust them completely and will have become a public service announcement for them, NYPres Hospital and for having an MRI scan regardless.
Yea, I have had symptoms involving my sinuses pressure behind my sinuses and daily headaches, aching behind my right eye, etc.,
I would suggest keeping in touch through “My Chart” and finding a doc near you in case of an emergency.
As for me, I will continue with Dr. Connelly for yearly checkups and a local endovascular surgeon for day to day questions. I hope this helps you!
Thanks for your response! I certainly have considered staying with Dr. Connolly. I do feel like I need someone local for any emergencies that might pop up. Comforting to hear others with similar symptoms! Dr. Levine was in the OR with me too. We had the same team!
Welcome to Ben’s Friends. My name is Merl from the Modsupport Team on here and as @Moltroub mentioned I have had a few neurosurgeries (including craniotomies) and post-op pain is very common. The actual incision wound can heal really well and externally, everything can look fine, but internally… …that takes time. There is a nerve known as the 5th cranial nerve or the trigeminal nerve and when it is irritated or damaged it can trigger a condition called ‘Trigeminal Neuralgia’. One issue with this particular nerve is that it has a few branches off of it one for the eye, nose and forehead. One for the upper jaw/sinuses and another for the lower jaw. Damage anywhere along the nerve tree can send pain messages effecting any (or all) of branches.
One (of my many) post surgical diagnosis was trigeminal neuralgia. It was said to me that it was near on impossible for this nerve not to have been irritated or damaged during the craniotomy. The healing post surgery takes time. Just when I thought ‘Ha, I’ve got this thing sorted. I know how to manage it all’ it would up and throw me a curve ball from left field that would often knock me to my knees. I learnt I had to be super flexible, to be able to adapt to whatever today throws at me.
I get all sorts of headaches, hence the neuralgia diagnosis. Initially, I was told they were tension headaches and was administered Botox. If the HA were tension then the Botox should have assisted, but it didn’t. I tried a TENS machine, hydrotherapy, acupuncture amongst others and all had their benefits but none were my ‘key’. I had one medico tell me 'Well, you’ve had brain surgery… …What did you expect?" I didn’t expect ‘THIS’, but here I am. Now I just have to manage.
Now, I try to manage the best way I can for me. If that’s with medication, I use it. If that’s with relaxation techniques, I use them. If that’s a change in activity, I do it and if that’s a dark, silent room I use that too. These are all things I do to manage ‘Me’ and as I often say ‘Every day can be different’. This year is 10yrs since my last major neurosurgery and I’m still on a rollercoaster of headaches and weird symptoms. I can’t remember my last symptom free day. If you are able to manage with Tylenol that’s a bonus, a HUGE bonus, but if you ever get a headache, the likes of which you’ve never had before, that’s a sign you need to “ACT NOW!!!”. Don’t mess around. Get to a hospital.
As for you not having a California Neuro, I would suggest you contact Dr. Connolly at New York Presbyterian. Often these medicos have their own networks of specialists in differing states. These networks can often assist in regard to transfers of medical files and information. Because many of these relationships/networks are already established you may not need to start the process anew, making the processes somewhat easier.
Hope it helps
Merl from the Modsupport Team