PTSD and Medical Sensitivity Eek!

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Les,

I think that as soon as you see the infection rate where you are getting in control and hospitals no longer under pressure, I’d get in contact with the doc about those scans and get a game plan assembled.

It makes perfect sense that nobody can contemplate these things at the moment but as soon as the pressure is really off the hospitals, get yourself as near the front of the queue as you can.

I think here in the UK, we have been under so much pressure that waiting lists for routine ops are now towards three years so it doesn’t pay to sit back and wait for the doc to contact you!

Wishing you the best,

Richard

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Thanks, I’ve pretty much been able to stay in contact with my Dr’s, it’s just wait.

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Forgot to add isn’t email great.

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@LESR I am so sorry this pandemic has put your angiogram in pause. Hopefully COVID rates continue to go down. And you will be able to schedule .
Things here in the states have started to move a bit with some procedures but not others.
I did wait myself for 3 years after my first angio and embolism cause I had a stroke during it and I felt my brain needed rest and when they went in some of the feeders had sealed themselves.
Hugs Angela

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I’m sending @LESR tons of strength and endless energy.

Everyone’s replies have given me the strength in my head to call the psychologist who is meant to be helping (and failing) with my PTSD and tell her that I need a referral onwards to a more specialist clinic otherwise I may not get through my neurosurgery. I have also been able to email the Neuro Ward Care Manager (the nice lady who was hammering on my locked ladies toilet door) and ask for confirmation of a quiet single side room for my recovery after surgery, as my PTSD is still resulting in screaming, retching and crying.

Nothing of what everyone has replied has been oversharing; it’s actually been a voice of sanity and I can’t believe how incredible everyone is.

I honestly feel as if I’ve lost my identity now that so many hospital people I don’t know, have had a good look at my brain images. It doesn’t help that they are all meant to be people who care about getting me better. It also doesn’t help that none of them can answer what I would have thought are basic questions on what is going on with avms. It definitely doesn’t help when my surgeon asks if he can have my operation videoed because I have such an unusual presentation in my brain.

I don’t have any emotion left and feel sick at the thought of having now spoken to my manager at work and suggested that I come back for a short period of the day. I feel as if I’ve split away into another world and it seems to be grotesquely funny to be enthusiastic again about a job which I might not even be around to do anymore soon.

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@talloak I am so sorry that your dr just could not listen to you and address your concerns without having you get upset. I am always shocked at drs that ineptitude to listen to patients- We know our bodies. Also many are unaware or dont believe in Dysautonomia health issues -there are 15 different types and many go undetected and go diagnosed as panic attacks. Its a fight or flight response. I have it but my response it fight my little sister has it hers is flight - she was first to be diagnosed. She also does PTSD she had got the flesh eating virus and almost died and almost lost her leg.
I can even tell right before my sister starts to have a panic attack cause she looses color in her face - This would happen a great deal when she in the hospital and she worries about everyone and would tell me to go home but I would not leave her.

I know its so hard to find a good therapist to aid in the tools to help with PTSD. I am glad you are advocating for yourself to get someone else.

I am wondering if it possible to get a remote consult with our best AVM dr here in the states he does do them- I think the fee was around $250 his name is Dr. Michael Lawton at Barrow in Arizona. Your drs may learn alot from his as well. Many years ago my girl friends mother had a massive stroke and she had clear instructions not to be on life support if she would not have quality of life. My gf was in Europe when it happened so when she got back her mom was on life support and the drs could not answer the basic question if off life support if her mom would live? If her mom would have quality of life? So she sent her moms scans to my stroke dr who is the head of stroke and he was able to tell her drs that that there was not going to be quality of life and they took her of life support and she passed away about 90 minutes later. It gave my gf the support /security she needed and hopefully those drs learned something.

You are the patient - This is your brain- you should feel comfortable and secure with what is happening .

Hugs Angela

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Don’t forget that the hospital you are being seen by will have a patient advocacy service. If you’re not happy with the service you’re getting, you can get them to help get the doc on side. It does sound like he or she is very “mechanical” and really doesn’t get the emotional / PTSD / panic side of the problem for you, so rather than making a “complaint” I’d say ask them for help in getting some understanding of your other needs, not just the surgical ones because the doc really isn’t understanding you.

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@talloak

I have read your story and I wish you the best :slight_smile:

I just wanted to say I was very anxious with my operation and can relate to your C PTSD as well

When I went in for my embilisation, I actually directly told them I was scared and do they have any valium and they mucked around as bit but once they saw first hand that my heart wanted to jump out of my chest and was hindering what they were trying to do, they promptly administered something to calm me prior to surgery (we are talking this was only a few minutes before being wheeled in to go under general)

I guess my point here is I think they dismiss a lot of what patients say to a degree as an over exaggeration but if they see it first hand, they are 100% there to help you and calm you. Make sure you speak up though. Tell them you feel bad, tell them you’re frightened. Nothing to be ashamed of at all. If they don’t listen, tell them again. I’m sure you will find they will be accommodating

It’s also normal to be freaked out and they do have to tell you the worst chance and the risks. They won’t do surgery unless the benefit outweighs the risk so you’re doing the right thing by having surgery

My risks were the standard stroke or death but I had a 50% chance of going blind and my vision they told me would 100% be different if i was in the lucky 50% and not go blind. Well guess what, after surgery, I had no vision loss at all so things can go positive. They just have to legally tell you this risks

Anyway I really truly wish you the best and you are strong remember that

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This is the first time that I can bring myself to sit down and write that I have had my operation to disconnect my four AVMs about 3 weeks ago and am now back at home. I owe something which is profound beyond expression to everybody who wrote back to me and gave me encouragement and kindness. Writing ‘thank you’ will never be enough.
I honestly don’t know where to start with how I’m feeling right now. My craniotomy is a wound from ear to ear and the pressure, vice-like pain in my forehead is always there. I ought to be grateful for the fact that all four AVMs were successfully disconnected but I feel invaded by my surgeon, knowing that he has had his hands and tools inside my head. He didn’t tell me that people who present with multiple AVMs at risk of bleeding, will also commonly present with ‘benign’ AVMs. This is what has happened to me: I agreed to a post-operation angiogram whilst still in hospital instead of having to come back 3 months later, and was told by the radiologist that I still had a visible AVM. I remember shrieking and crying with the prospect of having to go back into surgery and have my head opened up again only 2 days after the main operation. I wasn’t comforted when they assured me later that the new AVM was actually benign in presentation.

I have since been able to speak to the specialist nurses and I think they are quite shocked about how bad things have been getting between me and my surgeon. They will be present in future appointments and have assured me that my surgeon truly cares about how his patients cope after surgery. I have so many questions though about my new diagnosis: a benign AVM next to ‘dangerous’ AVMs at risk of bleeding but now disconnected, is not reassuring and all I can see is another brain surgery further in the future. I think the enormity of it all, is hitting me in the face like a brick wall; the whole thing has been a horror and I hate the fact that my surgeon has saved my life. I still have a background pulsatile tinnitus and blood vessels in my forehead are raised. I am losing double the amount of hair that is normal for me and the nurse has said that this is most likely due to the significant physical and mental stress. The only thing that I am trying to cling onto, is how I can develop a better understanding of the care that I need going forwards with my new diagnosis but I feel so depressed that my surgeon will only be able to support this superficially. I have said that I want to be involved in talking to other operating teams in the US and Europe; research Physics was my job for a long time and this would be like my bread and butter. I am very frightened and tired though; I am reliving everything about my operation and if feels like a movie or a play, but I know there isn’t an end where it all goes back to normal.

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Hey Talloak,
It’s great to hear from you again.
Some people think I’m too harsh with some of my comments in regard to the medicos, but I’ve had similar experiences to your self. I was told ‘All fixed’ only it wasn’t and I’ve needed a few further neurosurgeries to get to this point. The surgeries have been done to fix a known issue, but the flow on effects to complete the ‘fix’ have been HUGE for me.

In their defence the medicos need to have a level of emotional separation from it all or they’d never be able to to do the job. but there’s separation and then there’s complete disconnection. They deal with this sort of thing everyday, we don’t, we don’t have that luxury of disconnecting 'cos it’s happening to us and it’s all VERY real. Many of them can seem a little blasé at times and I found that frustrating beyond all measures. Some can have the attitude that ‘the less we know, the less we stress…’ and that maybe so for some people but I’m not one of them.

As for your symptoms post surgery, at 3wks, you are still in recovery. Your body is still trying to adjust to the changes. The bone flap can take 8-10weeks to heal, but the brain itself, that can take months to settle completely. This is a time to be patient with self, VERY patient. I can be very patient with other people, but I’m not very patient with myself, I have learnt that I really have no choice, the recovery takes as long as it takes, pushing that recovery to happen quicker is not a good idea.

Merl from the Modsupport Team

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Well, it’s great that you feel we helped you along the way a little. That’s what we are here for.

I completely agree with Merl: a craniotomy is the most major assault on your body you could have. Three weeks isn’t the right time to try to measure “success”: I hope that in a couple of months, as Merl says, things might be more settled, though I’m sure we all believe that recovery takes a lot longer than that overall.

I had just an embolisation and that is enough of an assault to get over. A craniotomy is major. That’s how I see it, anyway.

It sounds good how the specialist nurses are trying to help you and encourage you. Believe them, that’s my suggestion. I struggled to believe that my brain was “all fixed” after my op and I honestly believe that all that was required was time and belief. It’s a very easy thing to listen out for every strange noise, be sensitive to odd feelings and so on but until everything has settled down, we will have these things. It is much more helpful to believe in the doc, to be patient about the apparent remaining issues and expect them to resolve over the next year. It took me 1.5 years – until I had had further scans – to give in and trust the doc that all was fine and I honestly believe that if I’d stopped worrying earlier, I’d have felt better quicker.

Regards your new, benign AVM, it’s worth finding out what it is called maybe. What I know from being on here and doing some reading is that there are types of dural arteriovenous fistula that are considered not needing operation. These are classified as Cognard or Borden type I.

I think this is because a small artery is discharging into a big venous sinus and is not causing any reverse flow. We certainly have a member or two here with such a thing and who’ve been told that it is entirely optional whether to have an operation, or not. So it could be something like that but it is not unknown, even to me.

I know you were the most uncomfortable person regarding having an operation, so I know the whole thing has been really difficult. If you can find any help to deal with the more mental health aspects, I think it could still be of benefit. I’d really encourage you to think positively and find a way to wait out the getting better phase.

Here with you all the way,

Richard

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@talloak I am amazed that you able to be on here after 3 weeks. I was so sick after just my embolisms. I am so glad that they got your 4 AVMs, I dont blame you for reaction for the prospect having to go back into surgery. My surgeon also wanted me to go back after a month but I told him my brain needed a break. Our bodies of course our controlled by our brains and the brain needs time to heal.
Also if you search on here we all have lost hair via angio, embolism, and craniotomy. Your body has been through a great deal and hair loss is totally normal. Also here in the USA when they do surgery they put you on blood thinners which also causes hair loss.

That is terrible that you still have pulsatile tinnitus as well. I think I did too but only for a few weeks .
I think because of your job and the way that you think of course you want more data. I did trading for my career and always wanted more data too which brought me here and also to Dr Lawton through my other dr.
I think to ease your anxiety your idea to talking to other experts is a good idea.
I was searching for a similar case on Barrow web site and there was a lady who had 4 surgeries and was originally told she could not be treated but then went to Dr Lawton at Barrow.
Check out the story and then go to the bottom and click on the links and you can see her and even her scans.

We may not ever be back to our old normal but we can strive to be still be close to old selves and no matter what we are of value. You need time to heal. It will get better. We are here for you.
Hugs
Angela

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I didn’t have a pulsatile tinnitus post embolisation but I did have a loud pulse in my head. I don’t remember how long it took for that to apparently go away. I’m not sure if it didn’t just need me to stop listening to it. The difference between the two (in my mind, at least) is that my pre-op pulsatile tinnitus was a “whoosh”. It was a very unusual sound and exactly like liquid being forced through a tear in a pipe: it sounded “rough” and I characterised it as like the washing machine on pump out.

By contrast, post op, my loud pulse was exactly a normal pulse, going thump-thump, thump-thump really loudly.

The way I rationalised it for me was that the doc had closed off the short circuit that a ton of blood was doing in the back of my head.
This meant that I had proper high pressure in all of the arteries, even the ones that reached all the way to the top of my head and proper low pressure in my venous sinuses. I think my post op pulse was whichever artery goes past the front of your ear: the tragus: as I could feel that pulse like I never remembered feeling it before.

My doc did rescans at about 7 weeks and 52 weeks and probably 60 weeks and his conclusion was that there was nothing physiologically amiss: I simply had to get used to the new flows of blood that he had created by blocking off the short circuit that was there before.

It’s very disconcerting and you don’t feel “well” but if you’re in a similar situation, I hope patience will be the simple key.

Very best wishes,

Richard

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34

Richard, Angela, TallOak…

A few thoughts from a guy who just got home from the hospital today with his second embolization this week, 5th this year and I’m pretty sure 18th overall…

I trust my doctor completely, and I like him too. But he isn’t always the warmest and friendliest person. Nowhere near the “stuff” that you’re dealing with but just kind of “stiff” and business like. We’ve noticed, especially this week, that he is using his staff well with that. He has a Nurse Practitioner who is just wonderful to work with. She makes you feel comfortable, makes you at ease with what’s happening now and what’s happening next, makes you understand what the steps are so you aren’t wondering what is happening. I told her, as she was leaving my room today, that we really appreciated her taking the time to talk with us, explain things, answer questions and show that the team cares - even if only one of them shows up and spends the time before. We know the whole team does but it’s good to see it immediately in front of us.

I say that because I wonder if there is a way you can talk to someone higher up there and have a “liaison” between your doctor’s office and him and you? Like a nurse practitioner from his office who can show that she and all of them really care, even if ti doesn’t seem that way…?

We’ll talk more later - I’ve just been summoned to help get supper ready…

TJ

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I agree.

I found my doc great but more of a pragmatist, a mechanic, who knew exactly what he was going to do and why, but much less talkative.

He had a bunch of specialist nurses who shared their contact telephone number with me, so I had those to talk to. Much more approachable, very human. And they apparently relayed my graver concerns to the doc.

It worked well for me. It was the waiting for the op and the worry of a rupture meanwhile that I found the most challenging, though I found recovery quite challenging (as described earlier).

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@DickD I get thumps periodically too. Sometimes, at least it’s what I tell myself, it’s from sinus issues. It’s not constant, but I still don’t like it! I haven’t been on here in a while, so I’m catching up on newer threads. I had my six month angiogram back in March and the fistula repair was still good! I’ve also had a couple of MRI/MRAs since and no changes. In a few days I’ll be 10 months post embo, and I’m still a work in progress. I’ve definitely learned what’s important in life going through this. Sometimes it’s still hard to believe that I had a stroke, and I’m thankful for every day that I’m here.

Take care!

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Dear everybody,
I have read and re-read everyone’s kind messages and have managed to try a few different things to steady my horrible emotional spikes. Cranial Osteopathy is a life-saver (even after only one treatment!) and being able to swim in the sea again, helped enormously with my whole head pain.

I’ve managed to get to 2 months post craniotomy but had my review with my surgeon today and all the good things that I have tried to do for my head, have just crashed. He says that he would normally want to leave my new fistula alone as previous studies have shown that nothing much should happen but has agreed that there is good reason to operate on this fifth fistula (it’s a Cognard/Borden grade 1) given that it is dominating my life with my forehead blood vessels swollen again in exactly the same place and with me still hearing a higher pitched pulsing/pounding which just isn’t going away. He says that it does involve fairly significant blood flow and thinks that the chances of it sealing off by itself, are pretty small.

He says that he would have to open up my existing craniotomy wound and make a new bone flap but thinks that this surgery would offer no greater risks than the one that I’ve just had to deal with for the other four avms. I am in tears with the horror of being cut open again after all I’ve done to try and heal as quickly as possible. How much more hair am I going to lose around my scar line and how on earth can a scar cope with being cut again? Surely you would get lumpy swollen tissue and maybe even permanent loss of hair? This sickens me so much but at the same time, I feel that I must get this fifth fistula out of my head to feel properly free again.

I feel very frightened again; I haven’t agreed to anything just yet.

I’ve taken heart and courage from all your messages about clearly asking for what you need. Eventually a very kind neuropsychologist was able to speak to me for just a few telephone appointment slots and has spoken to my surgeon, on my behalf. I spoke very frankly to her about how my surgeon stays on his pedestal when he speaks to me. I think he was possibly a little more human today perhaps also because the neuro nurse was present but now my neuropsychologist has said that she won’t be able to carry on offering support.

I’m also meant to be starting a phased return to work tomorrow, going back for one afternoon per week. I feel completely splintered again.

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Hey Talloak,
I won’t lie to you… …it can be horrifying to be told you need further surgery and your fear, that’s normal.
I ‘try’ to look at things logically (I say ‘Try’ because I’m not always successful). What are the options? I could say ‘No’ but what are the consequences? Ongoing, increasing pain/symptoms etc. Would the medicos recommend further neurosurgery if it wasn’t needed? Probably not. But the whole idea of going through it all again is never nice. Never.

Your surgeon being up on his pedestal? Ohh that is REALLY common. Like "I’m the dr, so I know. You? you’re just the patient. You wouldn’t know… " as one of them said to me. They maybe really good with a scalpel, but their human interaction skills need some serious improvement. They may do this sort of thing on a daily basis, so it’s normal, but for us, the patients, it’s FAR from anything like ‘Normal’.

After my initial surgery I did return to work on a bit of a phased return. With the last couple of surgeries I again tried that ‘phased return’ to work. For me, that was an error that set me back in my long term recovery. Post surgery some of my symptoms reduced, some had disappeared but others were new symptoms, post surgery symptoms. My only advice here is to listen to your own body. It will tell you when enough is enough. But only if you listen. Ignore those, often subtle, signs and the cost to you can be HUGE.

Merl from the Modsupport Team

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@talloak

How do you feel about it being a Borden type I?

My understanding of the advice for these type of fistulas is that surgery is optional: that (for some reason) they are not seen as likely to lead to any trouble.

I have to say that after my DAVF embolisation I had increased tinnitus and could hear a louder pulse than before. No further work was done and I’d say mostly through getting used to life again and ignoring them, they’ve faded into the background. The additional pulse I’ve forgotten enough or it has faded enough that I don’t know if it is still there. The tinnitus is still there but “easily” ignored (not always as easy). So I wouldn’t guarantee to attribute the remaining symptoms to the type I fistula. Even if the doc fixes it, you may well still have some residual stuff there.

I’m hoping this helps but very conscious it might not!

Does your doc suggest leaving it for a while to see how you get on? I know you’re anxious about it (so getting rid of it ASAP is in your mind perhaps) but if it is a type I maybe an option is to check you out in a year or two and make the decision then rather than while everything has hardly settled after your original op.

Often these things feel urgent, an emergency, but that’s not necessarily true. My understanding of the Type Is is that these can be left alone forever and an op is only required if it evolves into a Type II.

Big hug from me. I think you’ve done very well. Just don’t rush forwards. Whatever you prefer to do, try to rationalise calmly what steps you need to take and when. Given the non-urgency of these things, maybe you can scout for a surgeon who’s a bit more user-friendly.

Don’t lose faith. I think you’re doing very well.

Best wishes,

Richard

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Dear TO,

I’m not really sure I’ve got much to add to my two friends, M & R, but let me try……

One of the things that I’ve learned over the time that I’ve been battling this is that the statement, “patience is a virtue” is true and it has also proven that I am not a very virtuous person. It’s hard to be patient, especially when you are the focus of it all, but it is often very necessary. Unless you are either in the middle of a bleed or at extreme risk of having a bleed sometime soon, it is almost always the type of thing whee there is time to get a second opinion. Feel free to ask questions and then ask questions about your questions.

Ask your doctor how many “cases” like you he’s done in the last year, 5 years or whatever time frame. And if he won’t give you a solid answer, ask again and again and again.

Find out from your doctor and your insurance company whether they could potentially cover plastic surgery consultations and procedures to put the scars under your hairline back into as minimally obvious as possible. As a 50 something white guy with “thinning” hair, I haven’t really thought much about hair loss. But when I had some patches that got really “non-existent” this summer, I got it all cut really short so that you really couldn’t tell which was just “short,” which was going bald “short,” and which was “radiation” kind of “fried” it and it fell out kind of in spots that looked like, well that looked like what my now 20 year old did when he was 6 and tried to give himself a haircut. :slight_smile:

One last thought for now - keep talking to us. Don’t worry about telling us the same thing again and again. We know what it’s like to be worried and if we can help by listening again and again, we’re in.

At least I am, and I’m pretty sure that Merl and Richard are to……

TJ

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