The journey starts again

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?

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

: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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Hey Moltroub,

I have a man banging in my head most of the day anyway :confounded: :laughing: They’re just adding to the cacophony :laughing:
(I’ve got to joke about it 'cos if I sit and think I’ll be rippin my hair out and I don’t have much hair left :rofl: )

My surgeries haven’t all been craniotomies. This one will be my 4th craniotomy (if it happens) and my 7th neurosurgery. I’ve had a couple of further surgeries related to it all, but they’ve been shunt issues rather than neuro.

But I can assure you, I’m not going for any records. I had a high needs client who was in and out of hospital like a yo-yo. She had burr holes all over her scalp, she’d had 10 neurosurgeries by the time she was 25 :grimacing: And that was 10yrs ago. Not a record I’d want… …ever. My first, they took out a large portion 4x6 inch, the second and third were both smaller at about 4x3in each. I’ve got all of these plates and screws holding the lid shut :laughing: This one is endoscopic so, smaller again (I hope).

Merl

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I understand completely how you are feeling. My second aneurysm (left over from the first clipping) I have been told is unoperable because of it’s location. But, they keep sending me to those awful angiograms, the ones that they put you to sleep and go through your artery into your brain. I am sorry that I do not remember the correct or full name of the “test”. I hate them. I had not had one for teo years (I am supposed to have one every year). I did have one in January of this year, only because my oldest son had an aneurysm rupture in December that the were able coil. He needed the test so they could make sure the blood flow had stopped. He did not want to do it. I made a deal with him that if he did it, then I would do mine. We kept our deal. His is in good shape (thank you God!). Mine, same thing they have been telling me for at least 5 or maybe more years now, its 4mm, hasn’t gotten any bigger and is still inoperable. I am not doing the test anymore. Enough about me.I will pray for you that God guides you in the direction that you need. Only you can make the decision. I already know what mine would be, but you have to make that decision. I am quite sure you already know that. But I do understand the awfulness of the “after” and I sympathize with you. I will continue to pray for you as I hope others will and I will support you in whatever your decision is. Much love :heart: to you my friend.

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So, it’s been a while since I posted an update. I didn’t want to update with little to no further info, but just so you all know I haven’t dropped off the edge of the world, here it is.

I keep telling other members to get a 2nd opinion and decided to follow my own advice. I’ve tried to learn not to have any expectations when seeing alternative medicos. Going into it with such expectations can lead to disappointment. As expected :laughing: the opinions all vary from ‘Leave it all alone’ to ‘Operate’ to ‘Well, what does the other neurosurgeon recommend…?’ so not really an independant opinion at all. After all of that I’m STRONGLY on the ‘leave it all alone’ team at present.

I’ve received my next ‘Invite’/appointment with the neurosurgeon for the middle of next month. I figure if it was still as urgent as he made out initially, the appointment would be next week, not next month, so I’m taking a bit of comfort in that. It’s just a waiting game again.

There’s your update
Merl

Thanks for the update! I agree with you Merl, if it was really important he’d have seen you earlier, so very good news indeed! Although I’m not as patient as I once was🤣

OK, so the next appointment is tomorrow afternoon and I’m prepared.
I’ve already got my own information. I’ve got the scan reports too. I’ve been looking into options and I’ve got all of my questions ready, written out. I won’t say I’m not ‘shitting bricks’, I’ve just got more of an idea of the dimensions of the bricks I’m trying to pass :laughing: :face_with_spiral_eyes:

I’ll update y’all after tomorrow.

Merl

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Good luck today Merl! Don’t forget the mortar!

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Okay, so, we’ve had an appointment and it’s all as clear as mud (not clear at all).
The surgeon is advocating for surgery with a view of ‘It might help…’ (Might not help too though)
So I put the question to him:-

“…if there is some flow via the aqueduct and the shunt is there to compensate when/if needed, then why have another craniotomy??”

To which he ummmed and ahhed a bit saying it may assist fluid drainage.
The surgeon went on to explain positional hydrocephalus. In very basic terms, when we laydown, our brains shift inside our skulls. Sometimes this shift can reduce the flow of fluids causing positional hydrocephalus and because the natural flow is reduced for me due to the growth, any additional alterations could cause the fluid pressures to increase. Presently, this is all theory because to confirm it I need to be horizontal (laying down) for 6-8hrs prior to the scan, so I need to be admitted for an overnight stay. This should show my brain’s positioning during the night.

But it’s all theory and no one really knows, least of all me.

So, the long and the short of it all is more scans, they’ll work all of that out when there’s a bed free overnight. Then in 2-3months another neurosurgery appointment and we’ll discuss from there. If I can push that one out another 2-3 months, then another 2-3… and avoid it for as long as I can :wink: Well, that’s my plan.

Merl

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Jeeze Manetti Merl! I wish the Neurosurgery World could know more about the brain and give pat answers, but I don’t think that will happen as we are all so very different. You may be a guinea pig and they’ll use you to write up some papers! That would be kinda cool knowing you’re helping the rest of us with brain issues and not just here, but the entire world. All kidding aside, I really hope they can figure it out.

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Apologies for me being a bit quiet of late.
Bit of an update. I got the call for the scan, I was hoping it was without toner, gadolinium, but unfortunately, they gave it to me. That stuff always knocks me something terrible and it was no different this time round, I still feel like %$@&, even days later.

I again asked them for a copy of the scans but this time they told me I’d need to ask the requesting Dr. to approve release, so I’ll have to wait for the follow up neuro appointment in the middle of next month.

Merl

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Thanks for the update Merl! As you know I’m allergic to the gadolinium, drink a good amount of a sports drink and water! I find it crazy that they won’t release your images to you, they’re your images after all! Realizing your appointment isn’t but a month away, it can feel like a lot longer when you want something now. Be patient brother!

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