The journey starts again

General
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Subdural fluid can occur as a result of head trauma, external hydrocephalus, or as a treatment complication of CSF shunting and craniotomies. It is critical to differentiate simple hygromas. The most common cause of hygrona fluid-filled sacs that develop as a result of repeated trauma or pressure over a bony prominence. This would certainly be consistent with the caving in feeling you mentioned. In this case the answer as whether or not its a problem that needs specific treatment will come from your surgeon. In simple terms its a blister at the craniotomy site. Blood work would tell you if its infection. If its a shunting problem, you would know it. Merl can explain that one. The fix may be time.

That being said, the manifistations of injury and brain surgery are amazing and very subtle. My great grandaughter has spina bifida (repaired) and had a tethered cord as well as a hygrona. My wife and I were caring for her as her mother had massive complications from her SLE. Playing around I learned that Miles Davis music was soothing to her. I was fortunate enough to allowed into her surgery. Because in addition to the duraplasty (a type of craniotomy) she was having spinal cord surgery, she had to be semi conscious. There is a neurol specialist present that is tracking every nerve twich etc as the surgeon works so as to avoid any nerve damage. He is also in charge of patient soothing. I mentioned how Miles Davis Music soothed aurora so changed to music to smooth jazz. Immediately there was a change in Auroras brain waves not for the better. So here I am in the OR with arguably the top pediatric neurosurgical team in the world explaining that just because Miles Davis is a renowned Jazz musician, he plays with a 4th note blues conversion (very subtle but it is his unique sound). He changed to actual Miles Davis from the jazz play list and immediatly the 2 yearolds brain waves changed for the better.

All this to say each of our brains are unique and while we can have some commonality in experience, “Normal” is very individual and varies greatly. There is no formula and self research can drive you nuts. It takes a while to learn who “you” is. Its the same with your team. Putting all the little pieces together is truly a journey with lots of forks in the road. Don’t take a single piece of info and try to make something of it. It cannot be done.

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Around the brain and the spinal cord is an area called the meninges. The meninges is made up of 3 layers of membranes to protect the brain and spinal cord. The delicate inner layer is the pia mater. The middle layer is the arachnoid, a web-like structure filled with fluid that cushions the brain and the tough outer layer is called the dura mater. ‘Subdural fluid’ is a collection of fluid under the dura mater.

Now, post surgery, subdural fluid is not uncommon. They (the dr’s) have disturbed the natural flow of fluids, brain swelling also alters the fluid flow and it takes time for everything to heal and settle. The external scars/incision can be all healed, but inside can take longer, much longer, to settle. Our bodies can naturally manage the fluid collection in most cases. But when it can’t, medical intervention maybe recommended.

TJ mentioned ‘If its a shunting problem…’
The natural flow of brain fluid is established in our mother’s wombs. When that natural flow is blocked the pressure can build and build causing a condition known as hydrocephalus or ‘Water on the brain’. We produce approx a pint (600ml) of CSF daily. If that fluid cannot escape from the skull it can become lethal and surgical intervention is often required. There are a few procedures that can be performed depending on the cause and location. The term ‘shunting’ is used where they divert the fluid from the collection point to other bodily locations, sometimes the heart, sometimes the intestinal cavity. This diversion is often done by a device called a ‘Shunt’, a plastic tube. I have a VP shunt (V=Ventricular (Brain) P=Peritoneal (intestinal cavity)). It diverts (or shunts) the fluid out of my skull.

As I say ‘We produce approx a pint (600ml) of CSF daily.’ There is limited space in our skull and in there, there needs to be a balance of brain matter, blood and CSF. When that fluid cannot escape I become VERY symptomatic. Producing 600ml/day it doesn’t take long for me to know there’s an issue and I can feel the pressure building behind my eyes and in my face. In which case, I need medical intervention.

BUT I must agree with TJ, “The fix may be time.” And nobody, not even the dr’s, can say with any surety, exactly how much time could be needed for it all to settle.

Merl from the Modsupport Team

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When I ruptured, I had a bit of fluid collected. There was a great debate between the Residents and my Neurosurgeon on whether or not to have a craniotomy. She stood her ground and no craniotomy, mine eventually corrected itself but it took awhile. Let us know what your surgeon tells you please, it’s how we learn!

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I will!

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So, tomorrow is my next appointment with the surgeon. He wants an answer, Yes OR No.
But if it’s ‘medically’ needed, it’s not like I really have a choice.
My hope/wish/dream is that the surgeon has suddenly had an epiphany and changed his mind…
…then reality kicks back in.

I’ve managed to keep myself occupied enough not to go too far down the ‘what if?’ rabbit hole, but at the same time knowing it’s coming. I think it’s the ‘knowing’ that makes it worse. I don’t want to go through all of THAT again. OMG, who would?

It’s only a consult tomorrow, it’s not the surgery itself. But the reality of it’s getting closer and closer and clo… is getting very real. I have told them I want a couple of additional tests done prior and the surgeon did agree at the time, but they could do the tests prior, whilst I’m in for surgery. It’ll all be up to the surgeon.

Wish me luck. I’ll y’all update when I know.

Merl

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Thanks so much for letting us know where you’re at Merl, it means a lot. Luck and big hugs from the other side…

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@ModSupport
Best of luck with what’s ahead of you. I guess you are right, if the neurosurgeon thinks it is necessary with a new surgery then you have no choice…
When my neurosurgeon told me that a second surgery was needed to securely close of the aneurysm after it had ruptured, I was shocked and very sad. The neurosurgeon looked me in my eyes and said “I can not guarantee that it wiIl not rupture again, as the remaining 30% of the aneurysm couldn’t be repaired when it ruptured, he continued ”if it does, you will not survive “ . That was the words that made me understand that I had to do it.
I will be thinking of you.

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I too was shocked. For me, I knew further surgery was going to be needed at some point, but craniotomy was NOT on my list of possible procedures. Then when he said it, I just went numb.

And after much self reflection, that’s exactly where I ended up.

The words I received were “if we leave it, it’s only going to get worse”.
They never give guarantees, just percentages or best/worst outcomes. There were too many patients suing when their guarantees failed and, in all honesty, we’re talking about the brain. 1mm to the left vs 1mm to the right could make a world of difference. So, even giving some sort of promise of outcome is fraught with danger.

The ‘best and worst’ case scenarios I was given were “life goes back to normal or bedbound in a vegetative state.” Thankfully, most of us are somewhere in between. As I’ve said before this will be my 7th neurosurgery, so I know the routine. It’s the recovery I hate.

Merl

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I’ve just now returned home from the neuro appointment. Previously I stated:

I won’t say he had an epiphany, but he has slowed things down today. He’s agreed to do the requested tests/scans prior to any admittance. He again uttered 'This is not a ‘normal case’ and then went on to say he’d take it to a team conference, which I thought he had already done. Last appointment he was firm in his approach, today, not so much.

Here, when it comes to neurosurgery, they have ‘Team Conferences’. They say this is to discuss options, but it’s also a form of protection as the decision isn’t made by one individual but rather the team. If something goes wrong during the procedure, fault can’t be attributed to a single individual, but rather the ‘team’.

I’m pleased they’ll do the scans prior and just hope their conference can come up with a ‘Plan B’.
So, there’s your update.

Merl

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I think the doc finally listened to you Merl! It’s about darn time isn’t it? I imagine the cost of malpractice insurance is as high down under as it is here. It’s interesting that in Australia it’s the team, here it’s all on the individual doctor and of course the hospital if one is involved. It’s why they circle the wagons if something has gone awry in my opinion. I do know that my Neurosurgeon and her two colleagues do staff cases with each other, especially the tougher ones. I imagine you’d be at the top of their list. I do hope medical science will finally catch up with you…

Do you always see the same surgeon or do you have to see different ones each time? I believe I’m fortunate to have had just one keep exploring my brain. She knows it quite well.

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I am stunned that people have these serious bleeding issues and survive. Maybe not in as good a shape as they would desire but there is always hope if one is alive. Stay brave and get through this.

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There are periventricular and subcortical foci of white matter T2/T2 FLAIR hyperintensity, nonspecific but compatible with moderate microvascular ischemic disease.
Test results from my MRI can anyone explain this doctors have not got back to me yet?

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Hey Dawn,
often with these reports they are written in very scientific language and it needs to be interpreted, and translated, by a trained professional, a Doctor. I can see some language I understand, but as an entire sentence, that’s way over my education level.

Also, when discussing it with a Dr, if you have further questions regarding what it all means and what are your options (If needed), they maybe able give you a bit more appropriate direction in knowing some of your medical history. Do you have a regular PCP? Some neuro’s/specialists have waiting lists months long, but a PCP may be able to translate it for you.

Merl from the Modsupport Team

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Prior to my last episode I used to teach people with disabilities. Many stroke victims, and the resilience and determination some people can have is just mindboggling. I could easily fall in a heap some days, but there’s people out there WAY worse than me and they keep going. It helps give me some perspective.

And that’s about all I can do Joe. In all honesty, none of this is up to me anymore. I have no control. It’s all up to the medicos. The ‘rollercoaster’ continues…

Merl from the Modsupport Team

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Hey Moltroub,

That’s exactly why they do so as a team. You can only sue an individual, not the team. Some would say that’s a very cynical view and that they have team approach to share ideas. And it’s true, they do have a sharing of opinions BUT it’s also a form of protection. I think the protection is needed because 1mm to the left vs 1mm to the right can mean life altering changes. It’s finding that balance, not just for the dr’s, but the patients too.

Nope, my ‘former’ surgeons have all moved on. I know a couple have retired, I think one became a ‘consulting neurosurgeon’ (non-surgical) or sees only private patients. Others have moved interstate and overseas, following the $$$$$$. We had one of the country’s best neurosurgeons have a patient pass away, stressful for everyone, but the family sued. He lost his registration, now he works in China.

Ohh, they already have.
Quickest answer: Chop it off at the neck. That’ll fix it :grimacing: :laughing:

Merl from the Modsupport Team

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:rofl::rofl::rofl: I’ve told my Neurosurgeon and BH in the past to take me out behind the barn and get it over with….we haven’t had a barn in a very long time​:crazy_face::rofl:

It’s what we all have to do Mr. Joe, truer words were never said!

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Hello People,
So, I went and had the MRI’s and nuclear shunt tracing done yesterday and today I’m just ‘yuck’. I’m absolutely exhausted.
It was a long day of sitting around waiting, but it’s all been done. Now I need to wait for the neuros to have their meeting, come up with an agreed plan and then (hopefully) they might tell me about the plan.

So, again, I wait.

Merl

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Waiting is the hardest as we can’t control the situation isn’t it? Get your much needed rest and well earned rest brother! Thank you so much for the update…

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Apologies for being so quiet of late, let’s just say I’ve been a ‘little’ preoccupied.

Bit of an update.
Haven’t heard from the neuros, but that’s not surprising.
Spoke to my pcp to renew prescriptions and informed him of the scans being taken. I asked him about obtaining copies of the scans, "Ohh, you’ll need to go through the hospital for that, they belong to the hospital…’ Then he told me he had received copies of the scan reports, so I asked for copies of the reports which he then forwarded on to me.

Now, the present problem for me is fluid related, specifically CSF and it’s flow. The flow was completely blocked at the aqueduct at one point and they inserted a shunt to allow the fluid to drain from my skull. But my symptoms didn’t resolve, then they did the craniotomy to clear the aqueduct, but no stent was placed in the aqueduct. I can’t say my symptoms resolved post craniotomy, but rather changed. Some did improve, but then some didn’t and then there were these weird, ‘oddball’, symptoms that seemed to appear from nowhere, like a bolt of lightning.

So, I have a natural drain, the aqueduct, which was blocked. Then I have an artificial drain, the shunt, which was draining. According to the report I now have ‘restricted flow’ via the aqueduct and no flow via the shunt. This all has me very confused as only recently they altered the shunt valve settings and my system went haywire, but if there’s no flow via the shunt, those changes should have made minimal difference, if any at all :confounded:

This new surgeon is not a proponent of shunts, seems the shunt is no longer his preferred treatment. He wants to perform a procedure called an ETV (endoscopic third ventriculostomy) with the possibility of a stent, but if there is some flow via the aqueduct and the shunt is there to compensate when/if needed, then why have another craniotomy?? I haven’t heard from the neuro team, so I’m taking that as a good sign as either it isn’t as urgent as he first indicated or he still hasn’t consulted the ‘team’. Either way It gives me hope (and time) that I could still avoid another craniotomy. :crossed_fingers:

Merl from the Modsupport Team

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I hope it’s all good for you Merl! Sounds like they’ve been banging their head, well, really yours against a brick wall. I wonder if your close to having the universe record of craniotomies, I imagine so.

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