Fear and nerve pain POST surgery

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Hiya, I am a 29 year old female, who was diagnosed with a 4cm AVM in the bottom right of my brain.

I was working two jobs as a policy consultant, one in science tech and innovation, and another in gender and conflict. I Handed in my notice to go freelance in June, 4 days before ending up in ICU. i suddenly had a huge headache and I could taste copper in my mouth. I never really paid attention to health, so I stuck an ice pack on my head and continued working. The next day my mum forced me into A and E, and I was swiftly stuck in ICU for 5 days, whilst they diagnosed me with an AVM.

I then made the choice to go for surgery rather than Gamma ray, because I wanted the thing out, and I really didnā€™t want to have to spend the next 4 years worrying about it. In probability terms, the surgery was much higher risk short term, (1/5 chance of stroke, death, loss of hearing, movement etc), but the gamma ray had the accumulated risk over 3 or four years of rupturing again.

long story short, I was meant to have surgery 3 weeks later, but it got cancelled (NHS underfunding) 6 times until I entered A and E again in September because I had an anxiety attack. I then had the surgery on the 5ht of September.

Recovery has, of course been brutal. Fatigue is a whole thing to deal with, so are the headaches.

Itā€™s been 3 months now. What im currently struggling with is nerve pain where my scar is. shooting searing pain, and it sucks. Paracetamol, ibuprofen doesnā€™t work. I took pregabalin but I hate the side effects. what non medicinal things has anyone found helps? Massage? (Im absolutely terrified of touching the area incase my skull implodes), acupuncture? B12 vitamins? any advice?

I also have huge anxiety. I keep waking up to my body feeling like itā€™s dropping like an elevator, or watching a film and suddenly my body drops. Its terrifying. I used to never care about health, (my parents are French and I had a very French attitude about it, of donā€™t worry it will be fine donā€™t bother the doctor). ive travelled extensively, I have a masters I used to never worry about pushing myself or taking risks. And now im scared of even just walking in the street, going up and down stairs, getting drunk, it all terrifies me. ive had PTSD therapy. Im also finding it really hard to care about peoples menial problems, which is not a trait I want to keep because im normally a very empathetic person.

Has anyone else dealt with this? is it normal? what helps? Even knowing someone else has had these feelings might help me feel less scared.

Many thanks

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Hi @PopsAVM,

Welcome to the community. I like you went through craniotomy for an AVM in my Cerebellum, bottom middle right.

Like you mentioned, recovery is hard. I was told that waking up after surgery I would not have the AVM anymore, but recovery was going to be tough, and with extensive physical therapy (in my case) I should feel better 3-4 months down the road. I had surgery June 2022, and yes, recovery did get there.

Regarding the nerve endings on the scar, I had almost complete numbness on my back side of the scalp in my head. It was a mix between numbness and pinching. I was told by doctors that when they are performing cuts in surgery they canā€™t actually know what nerves they are cutting if any (microscopic). And I was also told that those nerve endings might take 6 months or longer to heal back, or not. That was @ Cleveland Clinic Ohio in the States. To this day the symptoms got better, no pinching or almost none, but I still have some numbness, which in my case is a trade off I am ok with.

I would say that many of your feelings post surgery are normal to all of us. Is not easy going through all of this. But in time you will feel better and learn to go through it all in baby steps.
Sometimes the fastest way to get to a destination is to go slow.

Take care

Francisco

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Hello @PopsAVM

A lot of your feelings are normal in my experience so unfortunately itā€™s typical of any Avm journey.
Age 19 i spent a year in hospital recovery from the bleed and surgery.
Fatigue is still a problem over 30 years later. Avm pain never stops.
I still donā€™t like touching my scar. The skin feels as thin as tissue paper but the first time i had a haircut post surgery i was convinced the skin would rip apart but of course it didnā€™t.
Id get some yoga or stretching a lessons with a sympathetic tutor, no headstands!, to see if it helps. There was some debate about me going to a gym but in the end i got go but had to start slowly.
Youā€™ll have to adapt but eventually you can live post avm.

Good luck
Tim

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@PopsAVM

Welcome to the forum! Youā€™re definitely going through it and Iā€™m very tempted to say that youā€™re still quite early in getting better, so donā€™t panic about not feeling ok yet. I had an embolisation and Iā€™d say it took me at least 18m to 2 years to feel back to normal.

Fortunately for me, Iā€™ve never felt PTSD, so I canā€™t tell you anything about that side of things. If you can access support for that, keep accessing it. I think it is a very debilitating thing that is dismissed by some but really important. Whatever support you can take up in that space, use, and donā€™t be shy about it.

Iā€™ve not got a craniotomy scar either but I did have a carpal tunnel release surgery several years ago. With that, a cut is made in the heel of your hand to release [a tendon? Something like that] in your wrist. Itā€™s a very simple thing in many ways but one of the elements to it is that since there are so many nerve endings in the hand, you can become hypersensitive in what sounds like a similar way to your scar.

I was advised as part of that carpal tunnel surgery to subject my hand to textures and basically re-teach it what normal sensation is like. That reeducation was to lightly touch with the pads of my fingers to start with and then move onto light running of my fingernails over the scar. Then to insert my hand into a bag of rice or lentils ā€“ things like that. Anyway, I can say that it was definitely important for my hand and effectively it desensitized it ā€“ took it back to rating things normally. So I think daring to touch your scar softly with the tips of your fingers could be a good thing: thereā€™s no way your skull is going to implode: and you should expect it to be hypersensitive to start with. It is the repetition and familiarity that will help to reduce it.

From what Iā€™ve read here, people do retain some sensitivity, perhaps where the bone is rougher than usual, but Iā€™d hope that some gentle stimulation might have a similar effect as with my hand.

Always feel free to talk about stuff thatā€™s bothering you here. Thatā€™s what this is all about.

Very best wishes,

Richard

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Hello @PopsAVM,

I hope I can maybe help a little bit. My background is also Science, Tech and Research and I have had two craniotomies initially for 4 dural fistulae and then for complications that arose that are still not okay. These complications had a number of inputs which included very poor judgement, terrifying post-operative (lack of) care and even worse communication from my surgeon to his colleagues as well as with me. I have now transferred my care to another hospital BUT there was at least one good thing that happened before I did this. I insisted on an appointment with specialist face, head and neck physiotherapists. They were able to support me with the pressure and nerve pain from my surgery and I understood from them that a self massage technique is possible to learn if the scar has healed (3 months should be long enough but get it checked). ā€˜Gentleā€™ is the key word here and you may want to ask for regular specialist physiotherapy appointments. I struggled for ages to gain the courage to touch my changed head because of how I still feel that I have let my body down. This does get better because the more you can massage your damaged areas, the more you can ā€˜reclaimā€™ your body from all the things that your medical team has done. Is ā€˜reclaimā€™ the right word? Iā€™m not sure but I have found myself beginning to ā€˜make friendsā€™ again with my changed head after I had to let my neurosurgeon take it over during surgery.
It is also horrendously traumatic to have suffered so many cancellations to your surgery before it finally took place. I have been fighting for absolutely ages to get a neuropsychological assessment (my first hospital just dismissed me) as I have noticed a change in my own emotions too. Never, never, never give in and feel forced to accept ā€˜noā€™. This neuropsychologist is aware that it is going to be hard to do an assessment as there are so many dreadful memories (I have given him the full story) but at least he is hearing my voice and somehow, we will achieve something. Can you perhaps ask for this too? Sorry if I am saying things that you have already tried. If you have anyone around you who has pets, I have found that animals can be very effective for PTSD injury. (Please ignore if you are not an animal person.)

Tons of encouragement,

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Thank you all so much for your kind words, this has helped enormously.

The big thing at the moment is nerve pain. I refuse to take pain meds because im sick of the side effects. Has anyone tried acupuncture? Does that work? Massage seems to help, but im still very scared of hurting my scar.

Many thanks!

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I also have a really bad response to pain medication. Accupuncture is one of the best things for my tension, pain and distress but itā€™s important to feel that you can have a rapport with the acupuncturist. I have had really good and bad ones! I have also taught myself using any books I can access from the local library, some basic therapy with herbs and their properties for helping pain. On my very bad days, sometimes all I can do is to place my hands on my head scar and leave them there, letting my head rest in the palms of my hands.
I also now know that my fear is at its worst when I have neglected my food and drink. Homemade soup is a lifesaver!

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Welcome to the family @PopsAVM

Sorry to hear about your experience but rest assured there are many of us here who have gone through something similar or if not worseā€¦ the lack of worry about others minor issues was also something I experienced after surgeryā€¦ kinda like I was rewired differently after surgery & thought life was too short to worry about petty things & add unnecessary stress!

As I get older I think this isnā€™t a bad trait to be a little selfish as we have been through a very traumatic experience & unless you have been through it, it is difficult for others to understandā€¦ not worrying about other ppls minor BS issues is quite normal & healthy!

Of course we are all human & this is life changing so please donā€™t beat yourself up over itā€¦ many of us live with anxiety & it is unfortunately a common thing in life that affects all walks of life!

I try to be grateful for what I have, how good life is, the second chance to live when it could have easily gone the other wayā€¦ keep up the fight & look after number oneā€¦ God bless!

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I am so glad to see ALL of this. Really good info.

And, yes, I think ā€œreclaimā€ is pretty good terminology.

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Hi there, so sorry to hear that you are experiencing this. What you are describing is pretty common after someone has had a craniotomy and it varies for everyone. I too had something similar after my surgery but it was more of a sore feeling on the incision site where they did my surgery but it eventually subsided with time and with painkillers. As for your anxiety, I can relate, I had anxiety too after waking up from my coma but it went away after some time. I also had a bit of OCD before my AVM ruptured but thatā€™s just one of the symptoms of my AVM being misdiagnosed as a mental illness. However, that too eventually stopped as time progressed. What Iā€™m trying to say here is that the brain is a very complex organ and whenever it sustains damage, it will try to reorganize itself in a way that it works for you and cope with the damage it has so it will lead to problems like anxiety, forgetfulness, and depression. As bad as these things are it is nonetheless a good sign as your brain is trying its best recuperate. hope this helps. Take care.

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I had a spinal AVF (base of skull to C7) and as a result had an embolization surgery this summer - 14 palatium coils in my right vertebral artery to shut it down. Thankfully it worked. The pain in the back of my head was so unbearable after coming of dexamethasone steroids post surgery - I went back on them for a good 5 months. Although the side effects were challenging they really helped with the head pain and inflammation. Almost 6 months post surgery and I still feel as though Iā€™m riding in an airplane. I assume my body is just adjusting to the change in blood flow/pressure etc. Still get random sensations like water dripping on my head and stinging but its not constant. What I find helpful is qi gong for brain and spine and gentle frequent walking. My balance is a bit off now but I find taking things slow helps me to stay on my feet. Soothing music helped me so much in recovering from the trauma of the whole experience. Also practicing Donna Eden energy exercises daily to try and rebalance my body. Before I was diagnosed I use to have regular massage and alternative treatments. Iā€™ve been too afraid to try anything yet but I think I might start with foot reflexology and go from there. I donā€™t feel comfortable touching my own neck yet let alone letting anyone else touch it!

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Embolization seems, on the face of it, to be a minimally invasive procedure (and in many ways it is) but getting used to the new pressures everywhere can be a longer thing. I can say it took me a few months to feel ā€œokā€, I then had a few days of quite significant dizziness ā€“ at about 6 months post op ā€“ and it took me 2 years before I basically felt ā€œnormalā€. Not everyone gets back to fully ā€œnormalā€ so I feel completely lucky but 6 months post op is still very early. Hang in there!

Richard

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Although two years feels like a long time - it is reassuring to know just how long the healing process can take. I am hopeful that eventually my ā€œnew normalā€ will be even better than I had before. Since coming off steroids my balance has been a bit off but it seems to be stabilizing again. I am so hopeful when things improve and it is so hard when they seem to go backwards. I have to remind myself frequently how far Iā€™ve come and that there is still a ways to go. Truly grateful for how well things have worked out so far.

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Hiya all,

Thank you so much for all your responses, its so reassuring.

What im struggling with right now, and im curious if anyone else had similar experiences, is

a) iā€™ve just been diagnosed with complex PTSD. iā€™m completely frozen mentally I canā€™t bring myself to get a job, to motivate myself, to care. iā€™m totally totally numb. I donā€™t care about anything, I have 0 will, 0 discipline, 0 motivation. I also cannot for life of me watch greys anatomy without freaking out. My therapist is going to start me on EDMR therapy.

b) Im still so tired all the time (its been 10 months)

c) my head still hurts (its been 10 months)

Kind regards,

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Hey Pops,
This is Merl from the Modsupport Team.
For me I wouldnā€™t call it so much PTSD, but after my initial craniotomy I felt like I was ā€˜walking on eggshellsā€™, just waiting for the next thing to break. I was very symptomatic and it seemed like everything was a trigger for symptoms. Bright light, loud noise, touch etc the safest place was hibernating in a bed in a dark silent room. But if I could sleep my mind would roll over and over (and over). It was exhausting. And that type of ā€˜tirednessā€™, itā€™s unlike my normal tiredness, it can drain me in a flash.

Thereā€™s a theory known as ā€œSpoon Theoryā€. In very basic terms spoons are equivalent to energy. Hereā€™s a very basic example:
Letā€™s say I have 10 spoons of energy for my day and I need to budget them out over the day.
Getting up, having a shower, getting dressed, preparing breakfast, then getting ready to go to work and Iā€™d already used 3 spoons. Then I have to drive to work, deal with the traffic and other idiots on the road and Iā€™ve used another 3 spoons. Iā€™ve used 1/2 of my spoons and my work day hasnā€™t even started yet. By early afternoon Iā€™ve run out of spoons, now I can use spoons from tomorrowā€™s quota, but that will mean less spoons for tomorrow. If I keep borrowing spoons from ā€˜Tomorrowā€™ come Friday I have absolutely no spoons left. I can ā€˜tryā€™ to ignore my symptoms and just push on but thereā€™s always a consequence in ā€˜pushing onā€™. (Usually in agony.)

Iā€™m not going to tell you ā€œIt gets betterā€¦ā€ For some people it does, for some it can take a LONG time to find the ā€˜Normalā€™ again. I canā€™t say that Iā€™m better but rather that Iā€™m better at managing around ā€˜Meā€™. My last neurosurgery, No. 6, was 10yrs ago now and still today I have to manage around (what I call) my ā€˜weird symptomsā€™ daily. I never know what today will present. Some days itā€™s manageable, some days it manages me.

Merl from the Modsupport Team

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Hi @PopsAVM

How are you doing? There are definitely others here who are just about as stuck as you. If we chat a little, Iā€™m hoping theyā€™ll see your story and feel able to share how they are getting on.

For me, I found I worried that I was not fixed post embolization. Ten months doesnā€™t feel ā€œa short whileā€ post op but for brain surgery, it is still pretty early, I think. So I think itā€™s normal to have some weird stuff going on and to worry about it.

I had my op in April 2017 and in the October, I had a few days of worrying dizziness ā€“ you know, properly worrying stuff ā€“ so I went back to the doc. It took a further six months to actually see the neuro and a month or two after that to get an MRI and an angiogram. The conclusions from those were ā€œnothing wrongā€ and the recommendation was basically to stop worrying about it. It is fair to say that by the time I had those scans and waited for the results, I hadnā€™t had any more dizzy spells and the amount of weirdness going on was much less. It took me 1Ā½ to 2 years to accept that I was fixed, to believe (or pretend to believe) that I was fixed. Iā€™d say it was that acceptance and the time margin that led to be being ok. Iā€™m fine today, 7 years later, and Iā€™ve been fine since I decided to accept the doctorā€™s answers.

In what ways does your head still hurt? People do have issues with craniotomy scars and burrs and my doctor said he wouldnā€™t warrant to fix any headaches: his aim was to reduce my stroke risk rather than to aim to fix any headaches. It may be that ten months is still a bit early for you to feel fixed.

Sending you my very best wishes,

Richard

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I chose surgery, over gk for the exact same reasonings as you! They missed some during the op so had to have GK aswell anyway, but thats another story, Anyway, i Have /had the exactly same nerve painā€‹:melting_face: the only thing that ever relieved it even a little was gabapentin. It flares up when its very cold, or if im run down, sometime it just goes away for a while, days. Weeks months, then comes back. Been like this for 10 years. Id actually considered looking into getting the pins remove to see if that might help. However, and this is a purely my experience, and may not even be related, but i randomly decide to get a piercing in the little round bit of your ear that attaches to your faceā€¦and ever since, i have not felt the nerve painā€‹:eyes: So, im wondering if some kind of reflexology type thing is going on hereā€¦lo and behold the part of the ear that is supposedly linked to the head, is very close to where the piercing is. Now im not suggesting to go and trial and error piercings all over youself :crazy_face:but might reflexology be something you could look into? Just my ramblings thoughts. If you do, id really be interested to see what happenedā€¦

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