Hello i am 8 weeks out from a brain clipping . Still having alot of head pain on my left with nerve pain anyone know how long this goes on ? I want to get back to work but cannot think straight when its hurting . Please help me understsnd .
Morning Angela and welcome! Iāve moved your question to Mr Richard to our General platform so hopefully more individuals will come and share their experiences. Iāve not had a craniotomy, Merl with @ModSupport has had several. ModSupport folks take turns with all of the Benās Friends rare disease groups. Merl and Sharon rotate days so Iām not sure if today is Merlās day or not. Mr. Richard shared he is working with his mother who has dementia so he isnāt able to come on at this time.
I can share my experiences with headaches after I ruptured. For the first couple years it seemed they didnāt stop. The neurologist is the one to see for help by the way. But reach out to your Neurosurgeon. My guess is the nerves are healing as is everything else the surgeon had to move to get to your aneurysm. But thatās just a guess and I donāt know how long it will take for you. Merl has a great analogy with a piece of string.
Hang in there and donāt forget to ask your surgeonās team through your patient portal. Mine has a wonderful NP that reads all the messages and then discusses them with my Neurosurgeon if Iāve sent one straight to her. Dr. Q-W tells her what to tell me. At least thatās the way it used to be, now thereās a RN or two who reads everything whether itās to the Doc or to the NP, sometimes she responds which confuses me, especially if she doesnāt say who she is.
1 Like
Thank you very much
2 Likes
I was just replying to another member about hydration and protein. Are you staying hydrated? If Iām not, I get brain wonky. Ask your doc about how much protein they want you to have every day, I have to use protein drinks and/or I eat yogurt with 30 gms in that little cup. My surgeons mantra is hydrate, rest, eat protein, hydrate some more, repeat. Also check on side effects of any medication you may be on.
2 Likes
Thank you
2 Likes
Hey @Abkline2064,
Iām Merl from the Modsupport Team and as @Moltroub states Iāve had a few neurosurgeries, including craniotomies, none of which I would describe as āFunā.
You state you are 8 weeks out from a brain clipping. Some medicos like to give us a recovery timeline of around 6-8weeks and for bone/muscular healing that 6-8weeks is about right. By the 6-8wk mark the bone has meshed together fairly well, but the brain itself can take longer and for some of us much longer to recover.
My initial surgery, back in '96 was shocking. I had had fairly major surgery previously for a severely broken leg, a compound fracture and thought I knew all about pain. Neurosurgery gave me a whole new education in pain. To be honest I didnāt think pain like that even existed. My sister-in-law was diagnosed with M.S. and had headaches daily. If Iām really honest, I thought it was more a female thing. Then they operated on me andā¦ OMGā¦ ā¦Just WOW!!! intense. Iād had headaches before, so I knew what a headache was, but this wasnāt just a āheadacheā these were bolts of agony sent from the gates of hell. It took me a couple of months to find some sort of plateau where between medication and rest I could function. With lots of self-management and rest I got myself back to work on a part time basis. But things were not good. I was told by the medicos it was all recovery pain.
Around the 2 month mark I went to see the neurosurgeon for a follow up appointment, Iād had scans prior to the appointment and it was seen that there was an issue and he recommended he operate again. I wasnāt exactly pleased at the prospect, but thought If it was going to improve the situation, I didnāt really have a choice. So, after 3 months I was back on the operating table.
Now, I thought the first recovery was bad. Ohh, the 2nd was a horror story and as much as I tried to push myself to recover, my body pushed back. I thought to myself, this damn thing is not going to beat me, so I pushed myself harder, convincing myself that by pushing I was building stamina. I pushed too hard, too soon and something went āPOPā and I was again back on the surgeonās table. It took me a good 6 MONTHS to recover from that one. It wasnāt that one day I woke up and all was fine but rather a slow progression. Iām not sure that āprogressionā is the right word, but rather that I learnt how to better manage āMeā, to read my bodyās signs better and learn how function within my new limits.
Previously, I had 2 speeds. Full tilt and stopped. But now even 1/2 paced was often too much. I became super aware of what I call my āPrecursors of Doomā. My body would give me subtle signs, which I could choose to ignore or medicate to manage around. But if those symptoms increased or broke through the medications, I had to stop. If I ignored those signs my symptoms would increase and my body would tell me āLay down or Iāll put you downā if I ignored them further it would put me down HARD and often it would take a few days in a darkened, quite room to recover. I had to learn to adjust every aspect of life to manage around my head, this was all very foreign and I HATED it, but the reality was I really had no choice.
You mention āNerve Painā. This is a term I find frustrating, to me all physical pain is nerve pain. But it seems that once the wound itself has healed, itās labelled ānerve painā. When they cut through the scalp, they naturally cut through the nerves. For these nerves to reconnect, they fire off messages to each other and some of these nerve firings can be very painful and very disconcerting. I was told this was a natural part of the healing.
As for the headaches, ohhh, they can endure for a very long time. My last major neurosurgery was back in 2013 and still today I get some real super nasty headaches, the types where the medications donāt even touch it. At times Iām tempted to rip my eyeballs out with a teaspoon, the pain is just SO intense. The Drās like the 6-8week recovery guideline, but for neurosurgery it can much longer. Iāve often compared neurosurgery to you opening your computer box and throwing in a handful of aluminium foil flakes. If your computer worked at all after that, youād be lucky. They have opened your skull and disturbed the microfine neurocircuitries inside and the flow on effects can be endless. Some people bounce back really well, as if nothing happened. For some there can be lingering issues, but then for others it can be life altering.
Hope it helps
Merl from the Modsupport Team.
3 Likes
They put me on neurotin for the nerves Iāve yet to try it due to makes you dizzy and sleepy . I need to get back to work as I support myself just not sure how itās gonna be with me at work . I work on a computer all day . Do you feel the med would help me ?
2 Likes
Medications can be very individual. They (the medicos) trialled me on all sorts of meds. I was up, I was down heck, sometimes I was sideways and some side effects can be nasty. It really can be a case of trial and error to work out what works best for you. I get dizzy enough without meds, meds that increase that sensation are not for me. I have a close friend who swears by Neurotin, but it certainly isnāt something for me.
Iād recommend speaking to your Dr about it and keeping a diary or some sort of record of your experiences in using these substances.
Merl from the Modsupport Team.
2 Likes
Thank you again
2 Likes
How long should I expect the pain to be on the left side ? Any ideas . Itās like a cringing pain . Tightness sometimes too. But alot of neuro zingers going on
1 Like
Hey Angela,
Iām sorry to say it like this, but thatās a bit like asking āhow long is a piece of string?ā There are just so many variables. The brain itself has no pain receptors, it processes pain messages from elsewhere in the body, but it cannot feel pain. The meninges, the layers covering the brain do have pain receptors, but the brain itself does not. Any irritation of the meninges can cause issues with pain but trying to pinpoint cause vs effect is near on impossible.
There is a nerve known as the 5th cranial nerve or the Trigeminal nerve. It controls movement and pain reception of the neck, head and face. Any damage anywhere along the nerve branches can cause pain anywhere along that nerve tree. For example, my eyes are a terrible source of pain, chronic bad. But the surgeon tells me he went nowhere near those regions. Iāve required a few neurosurgeries, 6 so far, and the idea that my trigeminal nerve has not been damaged or irritated is near on impossible. But trying to get the medicos to acknowledge this as a source of my ongoing issues has also proven to be near on impossible. As one specialist put it to me āYouāve had brain surgery. What did you expect?..ā I didnāt expect āTHISā.
I have learnt I need to manage the best way I can for me, not the specialists, not the medicos, but for me. I canāt say āat 2pm Iāll be symptomaticā, if that was the case then I could manage around it. Sometimes it hits me like a ton of bricks, no warning, no signs. Like someone has kicked me in the back of the head and it drops me to my knees. I need to be able to take whatever steps I need to deal with it NOW.
Merl from the Modsupport Team.
3 Likes
I had brain coil back in aug 2021 and went back to work October 2021.
allow rest hydration taking it easy and everything will heal in time. what helped me is medicinal cannabis for sleep ,anxiety( post traumatic from event) and I did not use my oxycodone post discharge. My neuro team knew that I opted for this as I am a physician- recovered well without any neuro deficit. I know it is still ongoing research but i was on HRT prior to rupture and keeping my estradiol optimized was relevant for my recovery- watch BAF topic about menopause and brain aneurysm on you tube for more info.
1 Like
Hello and welcome to the post craniotomy world! I had mine in 2018. The recovery process, as in most improvement, wasnāt linear except the very basics of post surgery. Eating, drinking water, resting and moving regularly were critical for me. I personally didnāt benefit from neurontin, but I know other people it helped greatly.
I didnāt have leave and was raising my child on my income-I returned to work AMA. I was able to start slowly and build up. I would find myself exhausted at specific times of day or after every few weeks-then closer to every few months. I was exhausted physically and mentally, but other times, I could stay energized at other times, as long as I continued staying hydrated, eating healthy and taking rest breaks. I also remember it was at least a full year of the surprise scalp nerve zaps, scalp and intermittent head swelling. The good news is that you made it out of surgery and can reach out for help. The idea of a diary is helpful so you can identify what activities and meds are helpful or harmful. Start slow and donāt stop growing or sharing your input with others.
4 Likes
Thank you so much I appreciate your information on feedback.
1 Like
Marissa question ?
Iām to return to work Monday it would be 9 weeks out from surgery . Still having alot of nerve pain. Numbing . Do you feel Iād be safe ? I sit at computer as I can start back with a light hour sched . Work my way back . I just get anxiety from the pain and do not do well with others when itās happening . Thank you for your time
2 Likes
I would definitely speak with your healthcare provider about that and even speak to Human Resources about accommodations. I detested being in group settings initially because everything was overwhelming-the internal changes, pain, attention span limits, along with exposure to lights, sounds and navigating getting ready/going to work. If your provider is ok with going back, I would start slowly-like practice your pre-work routine and gradually build up work hours. I remember feeling like I needed a nap after getting up and ready. Itās a personal journey-Iām not the most extroverted person, but being around people and establishing a routine helped greatly. If you find itās too much, maybe try p/t or using a rehabilitation service for help-they may be able to link you with accommodations and opportunities with a better fit.
4 Likes
Great input . Thank you !
I would suggest talking to your care team and let them know that you have nerve pain and anxiety and they can give you medications and furnished medical excuse to extend your leave. Each of us have different experiences so honor how you feel.Do not rush just take what you can and each day can be different especially as you are still having symptoms.
Good Luck
Marissa
3 Likes
Hi Sweetie,
Iāve had a craniotomy 20 years agoā¦ my recovery took roughly a year but there are many factorsā¦ Age, other medical issuesā¦ The headaches take awhile while your skull heals. I had tenderness and skin sensitivity on my scalp for several years, nothing horrible but it definitely felt different. I did have hydrocephalus after surgery, roughly 2 weeks after and had to go back in and have fluid removed.
Make sure you truly follow up on any issues. I experienced cognitive issues afterwards and found trying to compensate exhausting at times but there werenāt many resources at that timeā¦ There are tons now but you must be your own advocate 
I have another aneurysm and go for a stent this time at the end of the month. Most donāt regrow aneurysms once you have a clipping, Iām a unique case 
Sending prayers and keeping you in my thoughts.
3 Likes
@Abkline2064 I donāt know if this topic will help, hope it does Post Surgical Headaches - Suggestions for Deal
1 Like