AVM: Leaving it to nature

General
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Hi @zoom

My name is Francisco, 44 years young. Recently diagnosed with grade 2 AVM in right cerebellum. Yesterday was 2 weeks since my craniotomy to remove de AVM here at Cleveland Clinic Ohio, with Dr Marc Bain. I will give you my experience and it is not advice, in the end of each of us decides.

  1. I was advice by Dr Bain that my AVM was superficial and craniotomy would make sense, the down side is recovery time 4-8 weeks. Mostly balance in my case. I was also given GK option and advice it would work, it would take 2-3 years and it was a possibility.

  2. Angiogram was performed June 6 and confirmed the size, location and 3 small aneurysms inside AVM. So now craniotomy made more sense because the risk of a bleed during 2-3 year wait.

  3. Craniotomy was performed June the 7th, 6-7 hours. I woke up in ICU around 5 pm, talking, thinking, asking for my amazing wife,

  4. They made me walk the day after and was released on the 10th to go to Hotel and do 2 weeks of physical therapy here before traveling home to Guatemala City tomorrow, I have clearance to fly now.

I would like to add that we interviewed the Dr extensively. About AVM experience. He sees around 100 AVMs a year, operates in 30 - 40%. We went through all the plus and minuses. In the end in my opinion, most of his practice was AVM related, that made a big difference.

What I would say is information you gather has to be as precise as possible, in the Internet you will find information that suggests AVM treatments and others that say the opposite. I believe, the more recent studies are more trustworthy and also many times some studies suggesting to watch and see have to do a lot with medical costs, in my opinion,

As of now I walk a little better and try to be patient. In the end every decision is personal, it is not wrong, just personal.

All the Best

Francisco

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Hey Greg
Big, HUGE, MASSIVE +1 on the need for more research, personal research.
I have had many a dr profess they have the ‘key’ and that their treatment regime is the only ‘key’ but often that’s been more their own ego than fact. Now, please don’t get me wrong here, I haven’t just written them off without trying their options, but after all of the trial and error (and error and err…) I have come to the conclusion I need to manage all of this for me, not them.

I must also agree with Francisco

And we ALL need to make that assessment for ourselves.

Merl from the Modsupport Team

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I have been re-reading this thread and feel a bit less lonely. I think that I am possibly now in a similar position with managing my own multiple dural fistulae.

I have long since had a spiky relationship with my neurosurgeon. An MRI in September now shows that I have re-appearance of two new areas of…don’t know…vascularity is how my neurosurgeon euphemistically describes it but I think I would probably call it ‘damage’. This is after a 14 hour repeat second craniotomy in April and the most horrendous post-surgical ‘care’ where amongst other things, my head was dropped during transfer from trolley to bed and no-one showed any interest in my head puncture wound from the operation head clamp. This bled heavily, stayed as a swollen hard lump for over a month and I am still bald in this area after nearly 6 months.

My neurosurgeon refuses to listen and take these factors into account even though I have tried on several occasions to tell him that they cannot be excluded in how my brain has now (failed) to heal optimally. He doesn’t want to operate again because ‘it will just re-grow and (he doesn’t) want to be having this kind of conversation again’. He tells me that the only option is to go on medication, Sirolimus, and see how I progress as I am PTEN gene defect positive and this ought to help. I pointed out that the Cancer geneticist at the hospital has told me that my questions are just wasting time. I would need to have my gene defect test explained to me in much more detail before embarking on pretty powerful immunotherapy.

We then stared at each other and I broke down into a full blown retching panic attack outside in the waiting room. Some days later, my neuro nurse tactfully said that my neurosurgeon thinks the best way forward is for me to write him a letter, stating how I feel and all my outstanding questions. My neurosurgeon didn’t even want to discuss an angiogram because ‘that is only relevant when planning surgery’…

I have probably bored people in the past with my very long messy complex PTSD messages and apologise. I don’t trust my neurosurgeon’s judgement anymore but I don’t know if I can afford to turn my back on him completely.

:pensive:

Am I being too scared?

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Hey Talloak,

Firstly, please stop apologising. I can assure you, you are not the first and you won’t be the last to go through PTSD in regard to it all. If I apologised every time for ‘my very long messy complex PTSD messages’, every post would be an apology. This is scary, this is complex and we know that better than anybody because we’ve lived it too.

In my opinion, NO. Not at all, because it is scary. These medicos deal with this sort of thing every day and can become a little disconnected from it all. In all honesty, they have too, if they took on the emotional weight of it all for every patient, they’d be burnt out in the first week. You and I don’t have the benefit of emotionally disconnecting from it all. This is happening to us and it’s all VERY real, so that idea of ‘Ohh, just get over it all…’ is not as simple as it sounds. And if anybody ever tells you they know all about it… …It’s a lie. Granted, the medicos do have a lot of information, but none of them have personally been here, in your position, so how would they know what it’s like? They wouldn’t. That line ‘We know all about it…’ is more ego than fact.

As for questioning the neuros… …OHH MAN, they DO NOT like being questioned in fact they can get rather anti indeed. I gave up on obtaining answers from the neuros and went looking for solutions/other ways to manage outside of the neuro community. If, as was professed to me, the neuros had ‘fixed’ the issue, then how do I best manage around the remaining symptoms. I got 2nd, 3rd and 4th opinions. I saw more practitioners than I can count on my fingers (and toes) from physiologists to psychologists, from acupuncturists to manipulative physiotherapists etc, etc. If someone had a theory or an idea, I wanted it. I exhausted every option open to me, but none of them had my ‘key’. When there was no answer, they came out with the diagnosis of ‘Idiopathic in nature’ aka there is no identifiable cause, so they chopped my head open, went poking around in my brain, but there is no cause??? WTH. Or ‘It’s all stress related’ STRESS???, no wonder I’m stressed dealing with that lot.

Well, when you ‘know it all’ you don’t have to listen to ANYBODY else, especially the patient.

Merl from the Modsupport Team

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I think this is reflective of a number of us tbh.

Honestly, it sounds like he understands that you’re not getting on with each other and the idea of talking to someone else (to then relay to him, or others) or writing it by letter can take the emotion or difficulty out of it for both of you. Have a go at doing a letter, keep it constructive and see what happens. With luck, he’ll pass it on to a colleague and you’ll get somewhere.

After my embolisation in April 2017, I was never quite convinced I was all fixed. In the October, I had several days of quite noticeable dizziness and concerned that I was going backwards rather than forwards, I went back to my GP. Naturally he referred me to neurosurgery again and I had to wait until March 2018 to see the neuro. What were his first words to me as we met? “I think this is all going to be a bit of a waste of time.”

Well, you can imagine how I felt at waiting months and months and before I’ve even said a word of what was worrying me, I get shut down. So I was a bit stern with him.

I agree with Merl. Some neurosurgeons are a bit up themselves, believe in themselves so much that it is difficult to get through. The guy who actually did my embolisation was a consultant interventional radiologist and was much more approachable. I think they were both more or less “mechanics”: people who understood how things work and what they could (and couldn’t) do to fix things (and if they knew they couldn’t think of a way to fix something would each have their own way of saying “nothing I can do”.)

Six months after that argument with my neuro, I’d had two MRIs and an angiogram and the conclusion of the team was “there’s nothing visible wrong.” And, bluntly, if they can’t see anything wrong, they can’t do anything to fix it. It certainly doesn’t mean there’s nothing there, it can just mean it’s not big enough to see. The encouragement my doc gave to me? There’s nothing visible: I just need to get used to the new plumbing and that’s what I resolved to do. I still felt uncertain for at least another six months but I resolved to believe the man and take any remaining weirdness as nothing to worry about unless it was sudden or acute and by that means I’ve decided I’m all fixed over the last 4 years.

Am I fixed? Who knows. But putting it behind me – believing there’s nothing physiological to be done – has been my best way to move on.

You are absolutely not alone and PTSD sounds like some of what you’re going through (I don’t know v much about PTSD). As well as trying some steps with the neuro, I’d talk to your GP about PTSD and see what steps they recommend on that front.

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Massive thanks to both of you for your messages…it is as if both of you are in the same room, encouraging me but still managing to make space for a moment of ironic humour (I did chuckle… :slightly_smiling_face:)

I managed to write my letter to my neurosurgeon and actually felt as if I had really managed to offload the very worst of my post-operative experiences (horrors) in a professional way, and lay out suggestions for thinking how to deal with my recurrent areas of damage in my brain.

Unfortunately my neurosurgeon wrote back with a letter that pretty much repeated everything that he had said in our last (disastrous) face-to-face clinic consultation. For the second time, I went into the most horrendous black place ever and (yes, I’m going to break the stigma), I found myself quite naturally thinking of plans to finish my life as my neurosurgeon’s clinic and the hospital closes off any pathway back to humanity again and again.

I never slept that night and got up at 4.30am to write a response back to my neurosurgeon telling him that ‘the hospital’ was driving me into suicidal planning and amongst other things, it is not acceptable to hint that I would not get further help for my head wound from the craniotomy head clamp because ‘I might be refused an appointment’, even though this head wound is now hurting more than my actual craniotomy scar, 6 months later.

(I can say from the bottom of my heart that writing that letter took the fire out my head. I managed to get a few hours of sleep and the horrific mental crisis thing passed).

My neuro nurse called me the following day in a bit of a panic and I told her that something has got to change with my neurosurgeon. She said that she was ‘worried about me’ (really?!!!) and I told her that this was the effect on me, of the way that the hospital had brushed my complaint under the carpet and that probably most people by now would be losing hope in themselves. It was all pretty blunt but I’m so tired now of using words that skirt around the issues.

I’m asking myself what does all this mean for me now? Even an email from my neuro nurse makes me feel sick, and her last one said that she had been advised that the hospital would definitely not be re-opening my complaint…and that’s with me talking openly about finishing my life. My neurosurgeon seems to have scheduled another head MRI for me at the beginning of December which is something, I guess. I am so worried though about the pain in my swollen forehead blood vessels on exercising.

I am sick with terror about being under a neuro clinical team who as I feel, are keeping their distance very carefully from me. My neurosurgeon even wrote that as long as I chose to be treated at this hospital, he would offer me the best care but he had to warn me that it might not match my expectations. I found this to be a terrible thing to write in the circumstances and told him that my expectations were only of compassionate, safe care with humanity and that I was complaining about basic failings in these skills in my post-operative recovery stages that caused me harm.

Is it possible that a hospital can drive you out of your mind? I’m so sorry…I’ve gone on and on about the dogfight that I’m having with my neurosurgeon and hospital but I am so desperate for a fresh perspective on this.
:worried:

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I think this is one of the useful things about writing letters or emails: often it is useful to write exactly how you feel in a letter or email, go to bed, and then next day tear up the letter or delete the email. If it is any consolation, I wrote a pretty strong letter or email back to my neurosurgeon, not least because the summary letter he wrote to my GP was all his side of the story.

Anyway, what to do next? The only route I can think of is to talk to your GP about options. Is there somewhere else they can refer you? Can you be measured enough with your GP that they get that it’s the neurosurgeon being unreasonable rather than you being unreasonable? (I expect there is a bit of influencing to be done to try to ensure the GP sides with you).

I’d definitely talk to your GP or the practice about all of it: even whether there are places you can complain at when the hospital refuses. I do know there are others here who have had something of a fight with the NHS, though I don’t remember seeing recent stories.

Very best wishes,

Richard

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This sounds similar to something another user is talking about in another forum. Does it sound at all similar to what you’re going through?

You might need to tell me what your troubles are one at a time. All in one stream means I only answer one thing and miss everything else!

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PLEASE, stop apologising.
In my view the medicos are great at the medical side of things. Emotionally, they are fairly disconnected from it all. The common arguement is that if they become emotionally connected it could interfere with their professionalism. But then some have such a self-righteous attitude that their professionalism is already in question. Talking about self harm with such people will get a reaction, but not a positive one. They don’t see the correlation between cause (their actions) and effect (The impact on you) and try as you might, they will take absolutely no responsibility what so ever for your mental state. Why do I say this? Because I too tried.

I too questioned my surgeon, ahhh, they don’t like being questioned. I had 3 neurosurgeries in 6 months and the ‘fix’ I was promised didn’t happen and nobody wanted to know nothing. I’m fairly limited in my state, we had 6 neurosurgeons at the time. 3 of whom only saw private patients, I can’t get private health insurance, they voided me. So, I have to use the public system. I made an appointment with a different surgeon to obtain an opinion and he simply referred me back to my original surgeon. Any alternative Dr I saw would refer back to the neuro’s report, which basically said “All Fixed”. As for the hospital, they are all about self protection. They all have insurers and the very last thing they will ever admit to is liability. When I queried my surgeon his first question was “What? are you going to sue me?” I had no intention of suing. I was looking for answers, not money. How am I supposed to manage all of this?

I had an insurance policy and made a claim. They sent a professor of neurosurgery down from head office to examine my claim. I thought he would simply cancel my claim. He read all of my medical reports, treatment reports and follow up treatment options I’d trialled, all whilst peppering me with questions. And he turns to me and says “well, in my professional opinion…You’re screwed…” To my utter relief he approved my claim. I obtained a copy of his report and if I ever need supporting documents, I use his report. Why do I say all of this? It only takes one dr to support you to change the whole outlook. So, the neuros don’t want to know, that can be infuriating, but what next?

Personally, I think Richard’s suggestion of you GP is certainly your next best option. You say that your head wound is from the ‘Halo’/head clamp and not the craniotomy itself. It can be fairly difficult to see exactly what is going on, on the side of your head. Having a dr view and assess the wound and the surrounding area would be a must. Another option maybe an assessment from a neurologist who deals with nerve damage. There is a cranial nerve called the trigeminal nerve. It’s known as one of the primary cranial nerves and controls movement and sensory responses over the entire skull. Damage anywhere along this nerve or its associated branches can cause no end of issues and develop into a condition called Trigeminal Neuralgia.

By no means am I saying this is your issue, I’m no Dr. But it may give you another option to investigate and trial. I have been in a similar position and when the only voice speaking back to you is your own, that echo chamber keeps repeating the same, same and I kept going over and over the same incessant thoughts. I had to change my thought pattern from frustration and blame to ‘How else can I manage?’.

Don’t be blaming yourself and don’t be apologising. You have nothing to be apologising for. This is stressful, we know that because we’ve lived it too. Come talk with us.

Merl from the Modsupport Team

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I’ll second this :wink:

This is what we are here for. There’s absolutely no reason to be apologising.

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There is a big lump in my throat…:persevere::disappointed_relieved:…reading your replies to me and I am very moved. There is something about such lived intense frustration, pain and distress that brings forward indescribable courage and iron strength and I felt that straightaway from both of your messages.

I have taken that in both my hands and…called my GP’s practice today (phew). I asked for a call as soon as possible. My neuro nurse had already been in touch earlier in the week when she was panicking about my words of finishing my life and asking that my GP should call me, so it was a case of me asking when this is going to happen. My plan is to ask my GP to make a separate referral back to my old neurologist immediately. I will ask about adhesions (this could well be what has happened with my head puncture damage and immediate hair loss), nerve damage and keep insisting on a proper assessment.

I have also left messages with my neuro nurse stating that it was clear that my neurosurgeon had stopped listening to me and that I want him to start considering again, which neurosurgeons he would refer me to, for a second opinion and/or transfer of care. I said that if he again revealed that I had made a complaint, this was effectively blacklisting me and I would never ever be accepted by any neurosurgeon. He would be stuck with me and we would continue to disagree.

I re-read my hospital correspondence and I think it’s getting much clearer to me how my neurosurgeon has stopped seeing me as a person and is following his own safe, sanitised pathway where he cannot be blamed. He writes about how reluctant I am to try Sirolimus medication without clear evidence of the advantages (!!!), and how I do not want to see the Cancer Geneticist again (yes, this is the one who said I was wasting her time asking questions). He then notes that it was actually not possible for him to find anyone with sufficient experience who would be willing to supervise the medication with me…

I think it is absolutely true that the traditional way of neurosurgeons distancing themselves from their patients can be carried to a ridiculous extreme, and they end up providing a poorer quality of care. I feel that this is definitely a method of control that my neurosurgeon uses with me and that my brain health will always suffer as a result. I hope and pray that my showing that I am not going to tolerate this kind of control, will trigger a better course of events.

Still very frightened though but trying to hold on like a lifebelt to everyone’s courage.

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I can certainly feel your frustration, loud and clear. I find it completely reasonable given what you are describing, and encourage you to not worry about stating that here, we are here for you! For you and each other, it is a community and we need to lean on one another. I hope you are able to make some progress with your GP, and I truly hope that a complaint does not get shared and impact further treatment! If so shame on them and the system and exactly the reason many of us have “whistle blower” legislation that protects people from this type of treatment. I would certainly question the character of those engaged in such behaviour, not to mention ethics and integrity.

I can’t offer further suggestion in respect to follow up, but again will say that we appreciate your frustration and know you always have us here. Take Care, John

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Hey Talloak,
Neurosurgeons deal solely with the brain. Not the scalp, not the skull, not the wound, just the brain. Anything outside of the brain is not their concern. I have a shunt, a plastic tube. The tubing broke and migrated into my abdomen, causing other issues. They operated to replace the shunt but left the broken tube floating around inside of me :astonished: I queried why they didn’t go fish it out whilst they had me under sedation "Ohh that’s a gastro issue now, not neuro. I only deal with neuro…’ Let’s just say I was less than impressed. I have since had gastro surgery to remove the offending tube.

I think in my case they call that ‘pig headedness’ :face_with_raised_eyebrow: I was always told “The Dr knows best” and for years I took that attitude. ‘Yes sir, no sir, whatever you say SIR…’ I was given all sorts of ‘…it could be ‘x’ or it could be ‘y’…’ but then using that theory it could be any other letter of the alphabet too. I was even placed in a psych ward because ‘Well, you just can’t be in that much pain…We can’t find anything…’ so then came the labels ‘Drug seeker’, ‘hypochondriac’ etc but something just wasn’t right. So I ignored it all and got on with life.

So, one day I’m driving down the road and the lights went out, I couldn’t see. I went to the GP who sent me for a scan. Then they came out with the line ‘Ohh, look what we found…’ like it was all something new. I wanted to SCREAM. I’d been telling them for years/decades and their response "Well, don’t blame ME…'. Due to all of the ‘Fun’n’Games’ they wanted to play I no longer simply take that ‘The Dr is always right’ attitude and I question everything. Some of them don’t like my questioning, but this is about me, not them. I can be a bit of a ‘Dog with a bone’… …I won’t let it go until I get the answers I require.

They cannot feel your pain, they do not have to deal with your symptoms. Post-surgery I’m laying in a hospital bed clutching my head in agony and I had one nurse tell me,‘Ohh, it can’t be THAT bad’. My blood boiled instantaneously. When I’m in pain, my already short fuse shrinks and in response I turned to her and snapped 'Well, you lay on the floor and I’ll boot you in the head, then you can tell me all about it". She was offended, but nowhere near as offended as I was. Honestly, they have no clue of the realities of it all. Their information is all theory, from a textbook. Very few have a ‘lived experience’.

Best of luck and please do let us know how you get on.

Merl from the Modsupport Team

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So @ModSupport Merl, who is @talloak best referred to for the cranium/adhesion/[burr hole?] pain? A general surgeon rather than the neuro or a plastic surgeon? Any idea? It seems if they ask the GP for a referral to the right other specialist, they might get further than the nightmare with the current neuro.

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Hey Richard,
Who to see? Now, that’s an interesting one. Some would suggest a dermatologist as it sounds skin related, but as this is the result(?) of neurosurgery other specializations maybe reluctant to intervene. They may therefore refer the patient back to the original surgeon, and around you go again.

As you know, I’m in Australia. Here we have GP’s (same as U.S. PCP), then we have physicians (basically medical investigators), then we have specialists (non surgical specialists), then specialist surgeons. If the GP can make a diagnosis and knows which specialization, they can refer you direct to that specialization. But if a confirmed diagnosis cannot be made, a more in-depth investigation maybe needed and this is where a physician gets involved.

The physician’s role is to send you for tests/scans/examinations and collate all of the information from all of the relevant medicos and reports, to come up with an appropriate diagnosis and treatment plan. There are a couple of advantages in using a physician. Firstly, it’s a fresh set of eyes looking at your case. Secondly, some dr’s take the attitude ‘I operated, I fixed’, so they don’t need to investigate. They’ve already drawn a conclusion ‘I fixed’, so they can be reluctant to look into it. Another point is that specialist can be excellent in their specific field, but anything outside that specialization is not within their realm. Some medicos can make out they know everything, but it’s impossible for a dr to know everything about every condition, that’s why we have specialists in the first place. To cut through all of the competing egos, an investigator or physician can take a more holistic view of the entire patient.

Talloak, you could try and get your GP to send you to individual specialists until you get an answer, but this can take months and months (and lots of $$$) in a process of elimination and that’s if you can get the appointments. Being a medical investigator, a physician, already has a network of specialist they use. They already have a raport with these specialists, so it’s not a case of them having to build a new relationship for your specific case. You’re using already well-established networks to obtain answers. This can make the whole process easier and quicker.

Hope it helps
Merl from the Modsupport Team

57

Hello everybody,
I have gone quiet because of a hysterectomy operation but I am reading everyone’s messages again (it is still like everyone is in the same room as me and yes, I still feel as if I don’t deserve the kind help and thoughts…fixed in battlefield mode)

The hospital where I had my hysterectomy operation realised after a first failed operation date (shrieking, crying, running out of hospital) that I wasn’t joking about the horrendous experience with my other hospital and the neurosurgery there. They have at least confirmed that I suffered pretty poor care and trauma and there were a number of moments of genuine kindness. I now feel as if I’ve been kicked many times in the stomach but the operation at least means that there is one less source of pain and worry in my body.

Weirdly, a few things happened before the hysterectomy date. Almost out of the blue, my neuro nurse told me about the chance to see a plastic surgeon who works with my neurosurgeon’s colleagues and who comes from Salisbury. I think this is meant to be a specialist place for people with burns and amputations and those kinds of trauma. The plastic surgeon turned out to be a reasonable kind of person although I told my neuro nurse that I was not happy with my neurosurgeon and this plastic surgeon being in the same room as was initially proposed. My neurosurgeon was suspiciously very nice, did not cause a problem and stayed in his own office. The plastic surgeon offered some plans but would not do anything to my (still) bald scar until a whole year has passed. My questions about whether hair follicles could still be helped in scar tissue confused him and he admitted that he would have to ask his dermatology colleagues for their thoughts. He also tentatively suggested that my neurosurgeon was a clever man and only wanted to see me cared for. I told the plastic surgeon that he must have x-ray eyes and ears because I was aware of no real care anymore. Hmm.
A little time has passed, I have prompted my neuro nurse but there is no news yet. In the meantime, I am now getting regular stabbing in this scar area (I know stress is a factor in pain perception) and it is frightening me. I have also heard nothing about my attempt to get my neuro clinical care transferred to London Hospital for Neurology and Neurosurgery. On top of that, the (nice?) plastic surgeon said that my scar could be treated on the ‘back of my neurosurgeon’s list’ and if I was expecting another brain surgery, the scar work could be done concurrently. This seems to mean that I might need to stay with existing neurosurgeon (God help me, truly) or only be able to get a second opinion with a new London neurosurgeon, instead of a transfer?!!!
I think it does definitely makes sense to be clear about needing to see a neurologist to get this stabbing ache verified. My GP is still pretty much clueless although kind and I think he has so far just referred me to a general dermatologist. I shouldn’t denigrate his efforts but yes, I am terrified of being a ping-pong ball again.
I am so tired of all of this and it hurts me so much emotionally. It feels as if I’m having to walk through a pack of wolves and hold on to my own priorities…

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58

It’s good to hear from you and overall, it feels like you’re in a bit better place than you have been.

Regarding the stabbing pain, does it seem internal? Various people round here describe ‘ice pick’ headaches: would it seem to correlate with those? Or is it possibly more related to something from your scar/craniotomy access hole, either internal or external? (Why am I asking? Simply that you might need someone else to look into it rather than the neurosurgeon, depending on whether it is internal or external).

I seem to think that @JD12 (and others) had icepick headaches for a while post gamma knife. I think they were just a phase rather than indicative of trouble that needed any intervention but will have to recheck.

Best wishes, Richard

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Certainly, we have members reporting such headaches post op and appear to be something of a phase for some people but I’m not medical, so if you’re ever worried about symptoms, it is important to get them checked out. I’m crossing my fingers that they are just a settling down that’s going on :crossed_fingers:t3:

Best wishes, Richard

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I can relate to “ice pick” headaches for sure. The first time it happened it scared the living you know what out if me. Then a few seconds gone…Dr. Google and some awesome folks here and I found they are not abnormal with really all types of treatment. I had gamma knife and it was some months after they started to occur. It became a fairly regular occurrence, sometimes many times a day. They gradually faded away and I can’t remember the last time I had one, several years.

With the first one I thought I was having another bleed, but it disappeared so quickly. I would always caution that while it was new phenomenon, I always paid attention. It became fairly regular but I always stayed super tuned in, always aware that it may be an indication of something else. Take Care, John.

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Sorry to say it like this but most GP’s are clueless when it comes to neurology, sure they may have a base knowledge, but neurology is a specialisation on its own for a very good reason. GP’s (general practitioners) can be great for your ‘general’ health needs, but none of this can be considered as general. You need a neurologist in my humble opinion.

We’ll be the ones to tell you what you deserve, and you should accept it willingly :rofl:

That regular stabbing in the scar, that’s pretty normal. It was explained to me that in the surgery they cut my scalp from the front fringe (former front (I’m slowly going bald)) to the centre of my crown, trailing down behind my right ear for the craniotomy. My scalp pain was extreme, they told me that the nerves the whole length of the scar had been severed and some of the intense pain is from those nerves firing, trying to reconnect. Eventually that OMG pain reduced, but some days, especially when it’s cold and my scalp restricts, even years later, I get some real scary ‘shocks’.

When they stapled the scalp together the exposed the nerve endings were SUPER, SUPER sensitive. Touching them, with a comb for example, was like being electrocuted or having an electrical current pass through you. I usually have long hair, but post surgery I had a buzzcut, no combs for me, well, not for a while anyway.

And that is completely understandable. For a while I too was in that ping pong ball cycle too, but after a while I become a VERY strong self-advocate. I had individual dr’s sending me for the same test/scan again and again. I started questioning why? what for? and started keeping my own records, my own reports. Then when a dr wanted to send me off for a repeat test I could show it wasn’t necessary. I also educated myself on some of their medical terms, so that when they tried to ‘Blind me with their wisdom’ I could shine a mirror on their approach, blinding them straight back. Some medicos didn’t like that but if you keep yourself informed, you have the knowledge to understand some of their approaches and terminology. The best way to walk through a pack of wolves is with a shotgun, the best shotgun to settle these particular wolves is your own knowledge. Keep yourself well informed and ask informed questions.

Hope it helps
Merl from the Modsupport Team