Had what I thought was the regular follow up yesterday. By regular I mean 'Hello, Goodbye, see you next appointment." That was not the case.
Seems the former neuros I’d been seeing had all moved on, either retired or found other positions. So I repeated my symptoms to the new neuro and showed him the recent scans, then he decided I need to have yet further surgery. ‘Ahhh WHAT??’
I have a VP shunt draining the fluid off of my brain. A few years ago it broke or fractured and was replaced. They left the broken bits floating around inside of me and now he wants to go get the floating bits. This was a shock as the former neuro knew this was there but did nothing about it all, despite the symptoms.
They’re not real sure what they are going to do, yet. They need to establish all of that, and I have to go have another MRI, but ‘…Ohh dear, here we go again…’ More surgery.
What an absolute bummer, Merl. Obviously, the new neuro has a different view of the shunt world than the old guys. So the neuro’s tune is different than the previous ones’. Have your symptoms changed?
Seenie (“Mod”)
Merl sorry for yur news and I know it’s easy to say from the outside but try not to get bummed out before a second opinion and I would ask what the down side is if you don’t do anything.
Hang in there
Deffinately get a second opinion and ask specific questions. If you are not dealing with toxic shock or an infection you might be better off just leaving that bit of nalgene where it is.
Oh my…Thats a tough one…Yea definitely second opinion needed…But if he is right maybe in the big picture surgery would be a good thing?..Hang in there and I hope you keep us posted!..Im sure you were quite shocked to here what he said!
Thank you all for your responses.
My symptoms have increased, I do try to hide it from the wife 'cos all she does is stress. But my hiding charade hasn’t exactly been working of late. I often go see my dr for meds but never really mention any of this, only because I’ve been on that merry-go-round before, I get sent from one dr to another, no one has any great answers and eventually they turn it around and point at me. I don’t need it, so I haven’t bothered.
With my last pcp appointment I was in LOTS of discomfort and he could see it, he sent me for scans. He got the radiologists report and called my home telling the wife I needed an appointment ASAP. So what did she do… …PANIC. Went to the pcp with wifey in tow and was told ‘might be a 2 year wait’ she was not impressed and she told him so. But it’s the public system so you’ve got to go on a waiting list.
We got home to find a letter from the hospital neurologists for the regular appointment, I thought nothing of it, but ‘she’ had other plans. Went to the appointment not expecting much and wifey was giving me the evil eye, and without saying it was telling me ‘TELL HIM or I WILL’ I got the message and told him. I took the scans and report from the pcp and the neuro got real concerned. Seems the tube is drilling its way into my bowel. If we leave it, it could pierce the bowel and result in septicaemia. Not good. It could pierce the bowel and progress to pierce the stomach itself. Even worse scenario. So the long and short of it is they have to go fish it out.
But at this point they don’t know if its the fractured shunt or the functioning shunt that’s causing the issue. My ‘hope’ is that its the fractured one because then it will just be a case of removal. If it’s the functioning shunt the whole damn thing will need to be replaced AGAIN and all the dramas that come with that. Ohh fun, fun, F#$@%^& FUN. Happy? I am not.
I am ‘trying’ not to stress, ‘she’ does enough of that for both of us. One ball of stress is enough for this household. I ‘try’ to look at things logically. At this point there are too many unknowns. Stressing about unknowns is a waste of time and energy. We need to get the information, make a plan, then work on that plan. Presently this is all up to the dr’s, I have no control, no information and no plan. I have pain, but then that’s pretty normal for me, so I have to manage that and that’s enough for me at the moment. Then we’ll get further info and act on it from there.
Does that sound logical?? or Am I just burying my head in the sand?
I’m still a bit numb about it all to be honest, I have TOO many questions, not enough answers and a wife I’m trying to stop from going worse case scenarios lines. I could easily go ripping my hair out, but there ain’t much left to rip out lol
Aww, Merl I hate to hear this. I think I’d be numb too. I don’t think you are burying your head in the sand…Are you comfortable with this new doctor? I would make a list of my questions and go back to the doctor, if that’s possible and try to get some answers. Since your symptoms have increased, it sounds like they really do need to do something, I’m so sorry you are having to deal with this. The bowel stuff sounds scary to me.
I wish you all the best and you are in my thoughts.
Thanks Aly,
"Are you comfortable with this new doctor? " PCP? Yes, I am. He’s very thorough and if I have questions he’s willing to answer and if he doesn’t know, he’s willing to say that too, rather than just having a guess. As for the new neuro’s ? I’m not sure at this point. I’ve just received mail for the next couple of appointments in the process for early next month. One’s for another MRI scan, which I was told I couldn’t have due to the programmable shunt, but the neuros now tell me otherwise ??? I don’t know.
Then I have another appointment with the neuros for them to make a plan, so it’s all in process and considering it’s the public health system which is fairly overwhelmed from all reports, they seem to be acting rather promptly, so that’s a plus. (I have to take every little plus I can get at this point). I have my list of questions all ready to go.
Scary ya reckon, hmmmm just a little, and this is just the start of the process. I’m sort of caught somewhere between a rock and a hard place, with no control at all. And for a control freak like me, that’s a problem. I’ve repeatedly told other’s
"God, Grant me the serenity to accept the things I cannot change
The courage to change the things I can and
The wisdom to know the difference"
So where’s that bloody wisdom gone now. LOL. I told the surgeon the other day “Just chop it off at the neck. That’ll fix it all” He looked at me in shock/horror. He did not see the funny side of it at all, but I have to make light of it all or I’d curl up in a ball and lock myself away from the world and there’s no use in doing that either. So around and around we go. AGAIN.
Thanks again, writing it all out helps me get it outta me (another plus).
Merl,
I’m glad you like your pcp, but hate that you’ve been told different things by different neuros. How are we suppose to know what to do when they have differing opinions about major health issues? At least they are moving quickly, it sounds like. And you sound well prepared with your questions.
Glad you have kept your sense of humor, you just keep those drs on their toes with it!
Thanks again Aly. They seem to be great at giving minimal info with the idea that it saves us from over thinking things. WRONG!!! For me, when they leave gaps in the info my mind wanders off and tends to fill the gaps with all of those worst case scenarios. I’d much rather they give me the full story, good, bad or indifferent. At least that way I have the scenarios and less chance of my mind heading off on a 90degree tangent.
Had an appointment with neurosurgery today and you could have knocked me over with a feather. We saw a younger female neurosurgical consultant and when we were talking about the headaches she stated “We know a lot about the brain BUT we do not know it all… …we do not know why some people have surgery and recover with very little pain and yet others have on going issues…” WHAT!!! A neuro who will admit they don’t know it all??? I looked at the wife, mouth a gape in shock. I was NOT expecting that AT ALL. What I was expecting was for them to say it was something I had done that had caused my pain or my use of pain killers that had exasperated my pain, but I got none of that. In fact she stated she understood that people need pain meds to manage daily pain, just to use in moderation (which I do anyways).
When I explained the situation she was empathetic, went and consulted another dr, came back and said she needed to talk to another surgeon but would keep my file open and get back to me within a few weeks. This was pleasantly shocking, what I expected was a ‘Hello… …goodbye, see you next year’ but instead I got genuine concern.
So, let see, they may, just possibly, act, instead of flogging me off (again).
One can only hope.
Ha! Well, Merle, the wonders the never cease, I guess! This sounds positive and I’m happy for you. Freaking finally. I hope this lady can help you. Have you heard anything else from this dr?
No Aly, not yet. As I say its all happening within the public system, so it’ll take time. They have a conference once per week to discuss patients, it’s been just over a week since my appointment. But she did say that I would probably expect to hear something within a month, which is fairly speedy for the public system here. Usually I’d be waiting months and months, that is, if I heard anything at all. As I said …"what I expected was a ‘Hello… …goodbye, see you next year’… If I’d gotten a call within a week I’d be suspecting there was a MAJOR issue.
I’m sorry that the new neuro wants to do different stuff, make sure that the risks of non surgery are greater than the risks of surgery. Maybe things will be good. But it sounds pretty involved.
Yea Marty, I’ve been putting off the surgery route for a long time (6yrs) and things have gotten progressively worse and worse. Now we’re at the point of “We’ve gotta do something…”. If the tubing pierces an internal organ then I’m in BIG trouble. They now need to establish how involved the other anatomy, blood vessels etc are. If they simply go in and pull it out without doing so I could end up having a major bleed or worse, but the wheels are turning (slowly). That’s about as much as I can hope for.
Hey Aly,
Still having lots of discomfort, but it isn’t considered life threatening, so I wait.
It’s all a waiting game at the moment. Waiting, waiting, waiting…
The neuro I saw said I should hear within 4 weeks but then that’ll be up to the surgeons. There seems to be a bit of an attitude of ‘Well you’ve waited this long, so you can wait a bit longer…’
Hey People,
OK, so we’ve had the follow up and, yup, they’re going to operate. When? well, that’s a whole other story. The best I can hope for is within 12 months, I’m not at all surprised, in fact I was expecting longer, so 12 months ain’t too bad. Just have to manage the pain and I’ve been doing that for a while, so just a case of same, same. If there’s an opening (No pun intended) they may decide to do it sooner, but don’t bank on it, so within 12 months it is. Am I happy about it all? Not really, but one thing I have learnt on this journey is that I can’t make them do anything until they are god damn good and ready.
So there it is, within 12 months.