The journey starts again

General
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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

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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🤣

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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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We had a medical incident where specialist scan results were released. The results showed the opposite to what the patient was told, at the next specialist appointment the patient showed up with a support person, his lawyer. This has made many medicos guard their back sides.

Private scans, outside of the public health system, I always get copies of, with reports. Hospital scans, that’s a totally different story. They have to be requested to be released by a treating Dr or by going via an official ‘Release of information’ request. ROI requests can take months to be ‘processed’. I’ve had to make such ROI requests for my former clients. I asked for specific information on one man’s behalf and they sent me 4 folders full of EVERYTHING. I had to go through it all. One client had some serious criminal mental issues. I had to get a court order, signed and certified to get access to his records, even then lots of it was redacted/blacked out. But it’s good I know how the system works, often when ‘Joe Public’ is confronted with it, he gives up “…'cos it’s all too hard…” or blows up because it is so hard. I ‘try’ to take the shortest route :laughing:

Merl

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That has been my experience as well. When I undergo a radiological procedure at a private radiological company, acquiring a copy of the written report and accompanying visuals is an easy matter. I just present my ID and the copies are produced. On the other hand, and when I undergo a radiologcal procedure at a hospital-affliated location, I have to jump through a number of form-driven hoops to acquire their copies. Which is why I have instructed my specialists to direct their referrals for radiological exams to my PREFERRED private radiologoical company. It pays for patients to flex their muscle, from time to time.

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Ohh ABSOLUTELY. I have found that if you allow them to ride rough shot over you, they will continue to take the upper hand. I’ve played those ‘The Dr is ALWAYS right’ games before, that’s why I’m in this position. I no play those games, no more. Some medicos don’t like my approach…when they ‘push my buttons’ I tend to push back… …I don’t care. This is about me, not them and I WILL stand my ground. I have been listed as ‘a non-compliant patient’ because I don’t take their word as gospel. In other words: I question everything, then investigate for myself. They don’t like that. Many specialists make themselves out to be the only oracle of information, so when I question them, I’m seen as questioning their knowledge. Ohhh, they don’t like that at all.

A hospital visit for me is a full day excursion, I live out in the sticks (rural). For many years hospitals were the only access for MRI’s. Now, my closest MRI machine is only around 30km, whereas the city/hospital is a few hrs away. For 90% of my scans I get the request sent to my local radiologist, but as this was considered a ‘specialized scan’, I had to go through the hospital system.

Merl

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That’s very interesting as I’ve never ran across having issues getting my own scans as our local hospital has a group of Radiologists that are their own company, so perhaps that’s the reason. Less than a handful of times, I’ve been told I had to get them from the requesting physician but that’s easy enough to get around, one just needs to know the State Statute for that. At the big hospital that treated my rupture they now wait for my Neurosurgeon to review the findings before putting them in my portal. My guess is because they put someone else’s in mine and we had a mountain of questions.

I laughed at loud when I read “Joe Public”. I actually could hear my old Supervisor telling me “What would Joe Public think?” One time I told her I really didn’t care as Joe Public apparently doesn’t know the State mandates.:joy:. At work, we always had release of information forms that clients weren’t compelled to sign as the mandates allowed us to gain information for our cases. When HIPPA started, every medical place of business handed out a copy of HIPPA, they forgot to include CPS was allowed access and thus had to make new ones.

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We don’t have HIPPA as such. Our privacy laws already covers everybody. We have a privacy commissioner and if that line is crossed, they will come after you. If it’s a serious breach or a breach for financial advantage, they have the power to put you in a cage (gaol). I know of a few investigations where someone with a disability made claims. One claim was proven to be correct, but inadvertent, without intent. The other was dismissed.

As a court ordered financial liaison person, a client would come to me for requests for monies, at times we had to say ‘No’, often for lack of funds or frivolous requests. Some would try to get others to call to convince me the money was needed. I had to be just SO, SO careful not to disclose. As I said to someone else, ‘I know the systems, I know how they work and I know how to make them work for me…’ If I’d REALLY wanted copies I would have been at the neuro’s office the following morning (or arranged it prior). I will get them, but honestly, if it’s bad news ie more surgery… …I don’t want to know and if it’s good news, it won’t matter if I don’t know. (somewhere in the back of my mind I can see an ostrich, with it’s head buried in the sand :laughing: :laughing: :laughing: ) What’s that old saying “Ignorance is bliss”.

Merl

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Ignorance is no excuse for the law is what the first Judge I saw told me for my first traffic violation. Right before he asked me if I wanted to be a sheep as I still had my driver’s permit and not yet my license.:joy:

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OK you lot, here goes…

That “The journey starts again…” line has suddenly has taken a dive into the land of shocking.

Last week I had and infection, a throat infection I thought, but my ‘normal’ sore throat management wasn’t working. Went to the GP and was told '…probably dental, here take some antibiotics. Upon visiting the dentist, she removed ALL of my lower teeth :roll_eyes: :astonished: The infection didn’t clear up, if it was dental that should have fixed it. It didn’t . Returned to the Dr, got stronger antibiotics and was told to go to the local hospital. Due to all of the neuro involvement, they didn’t want to know and sent me to the city base hospital.

At the base hospital (They already had all of my info) they go through my info with a fine tooth comb, confirming and I’m think ‘That’s a bit odd’. They had a nurse, OMG, tries to take blood (I’m sure she was a student). She stuck me and missed. Stuck me again, got it, but went straight through the vein and out the other side. But instead of slowly withdrawing it until the flow increased, in the vein, she pulls it out and has yet another go in the other arm. This time she’s got the angle all wrong. I says to her ‘Give the needle to me…’ ‘Ohh, we cant do that…Hospital policy…’ comes the response. and I told her “You can’t go digging around like that though” THANKFULLY, a senior came and took over. But a few days later and I’m still all bruised to buggery. Ohh, she made a mess of it.

They scanned me, had a chat, ummed and ahhhed. Then scanned me again with more deep discussion in hushed tones, then again and I’m thinking “WTH, something’s going on here…”. So, me being me, I ask ‘What’s going on?’ the young nurse turns to me white as a ghost and stammers without being coherent. The older nurse moved her on saying we found something on the scan. Even I’d already figured THAT out. “There’s an abcess…” OK, abcess/infection/antibiotic that’s fairly parallel, I thought. Then she says it’s multilobed and you need a biopsy. VERY rarely is an abcesses termed multilobed, unless there are multiple sources of infection. They often take swabs for infections, but a biopsy that’s looking for an even greater nasty and click…, …click…, …click the pieces all started falling into place.

Now, our hospital system is fairly overwhelmed and I thought “Maybe in a month or 2…” Ohh, no. One dr says ‘within 3weeks’. Next dr says, by the end of the week :astonished: They NEVER act that quickly for an abscess. Late Sunday night we got a call for the appoint Early Monday morning, the next day. They NEVER act that quickly for an abscess. So off to the city hospital on Monday I go. The ENT says ‘Well, we’re calling it an abscess… …at this point…’ but we need to take a clear margin around it". They don’t use that sort of terminology for an abscess, that’s a cancer terminology. Then he tells me they’ll probably need to take the tonsil too. OHHH FFAARRKK. This wasn’t just an ENT appointment, this was pre-op assessment. The ball is already rolling and it’s picking up speed.

In the mean time, knowing all of this, I’m also trying to keep wifey ‘cool, calm and collected’. So we’re calling it an abscess, at this point. We’ll have this biopsy then see where we’re at, just taking it one step at a time… …despite the fact I’m probably 10 paces ahead in my mind. The hearing in my right ear has slowly decreased, for the last 2days I’ve heard nothing on that side, just a humm. And the headaches… But then as one doctor said “That’s normal for you tho…” which is true even if I didn’t want to be reminded of it. I think he knew where my mind had gone, cancer, and was trying to divert my thinking (unsuccessfully). Look, they could come back and confirm an abscess and my reoccurring head pain is just that, reoccurring head pain despite the changes in headaches. Here’s hoping, but the reality…

Not quite the ‘Update’ I wanted to be giving, but here we are. I reckon they should just chop it off at the neck. Quicker and simpler for everyone that way :laughing: :wink: I’ll try to keep you all updated as time goes on.

Merl

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Christ on a cracker Merl! Your journey reminded me of two things - the first time I remember being admitted into a hospital was when my younger brother complained to Mom of his sore throat and off to the doctor we went. Doc checks out my brother and because I’m 3 years younger, he says let’s look at your throat. My Mom got a very stern lecture and it scared my brother and I both. We had never heard someone chastise our Mom in such a manner. Apparently my tonsils were more infected than his and Mom had been brushing off my complaints as me being Sarah Bernhardt. We didn’t like being in the hospital for those 3 days, it was a horror show and I sorely missed our dog and her litter of puppies. :joy:

Back in my early college days, I had a seriously infected lymph node and the university clinic doctor had me in for blood tests three times a week. I always had a very nice guy take my blood except for once and the woman jabbed that needle in and right through the vein. She was drawing out fluid and it hurt like the dickens. The young man heard me tell her that I had told her twice to take it out and if she didn’t do it I was going to punch her, came and took over. Why does it hurt so much when they go completely through?

I’m going back to my youth and I’ll send a prayer to Raphael. But since it’s you, I may have to talk with Jude as well. Fingers crossed it’s not as bad as you think.

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Like I say @Moltroub “…The ball is already rolling and it’s picking up speed.” I keep going back to the neuro appointment at the start of all of this topic. He wanted to do a craniotomy because ‘it might help’ If I’d agreed to that surgery, I’d still have to manage this too :astonished:

From here I just have to go with the flow. Handing all of that control over to the medicos AGAIN.

Ahhh yep. My language has been much more extensive I can assure you (He wasn’t just on a cracker :laughing: :astonished: ) but, here we are. I honestly can’t do anything from here. It’s all outside of my control. As someone else has pointed out, until we get the official word, it’s just an abscess. When it’s identified as something else, we’ll go forward from that point. Step at a time.

So, from here it’s again all up to the medicos. I must admit I’m a little frustrated the repeated head scans I’ve had annually haven’t showed. I thought any changes would be identified, but they weren’t… …hmmmm.

But the long/short of it all, let’s follow the steps. Plain and simple.
I’ll try to keep you informed.

Merl

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Step one - Hug your wife

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