End of the line????

[monicad1974]

:confused: :confused: I am going tomorrow to have my shunt reprogrammed. I think there is only 2 or 3 more settings it can be turned up. So what can be done if I get to the highest setting and I am still having problems? I'm not asking this right. When the shunt is on it's last setting what do you do? I hope you all understand what I am asking.

[Nathan]

I don't know the answer to your question because I go back and forth on my settings. I get turned up, then a few months later, turned down. I don't think I've ever reached the last setting. I just wanted to wish you luck and I hope that they get it straightened out and you get some relief soon.

Nathan

[Nat Hyland]

is it necessary to have a PROGRAMMABLE shunt? I have never had a programmable (just the old "dinosaur" variety), and I have had problems with blockages (doesn't everyone?), but no problems with regulating the flow and pressure per se.

Sometimes the less complicated things are, the better? Or don't neurosurgeons use the "dinosaur" type anymore, unless that is what you currently have?

Nat.

[Joanne1974]

I have had a programmable shunt since 1999. My shunt has been reprogrammed a number of times. I am now on the last setting. The neurosurgeon has told me that if I have any more problems, that I will have to have a new shunt placed (old dinosour shunt), or have a third ventricular done. (I hope I spelled that right). I don't seem to be having any bad side effects lately. Most of my problems, I later found out, was from a Topamax reaction.

I, however, might have to have my shunt reprogrammed after my baby is born on Monday, March 5. I have to make an appointment with my neurosurgeon after my baby is born.


I hope that you feel better soon. You will be in my thoughts and prayers.

Sincerely,

Joanne

[CathyE]

I go back and forth on my settings. I get turned up, then a few months later, turned down. I don't think I've ever reached the last setting.

I found your reply interesting! That is what I feel I will need to do as the highest Strata setting is too high for me (I think, I was getting some of my pre shunt symptoms back plus my "flares" were much worse) but I just tried the one lower. I did well at first, but after 3 weeks was definitely draining too much.
Unfortunately our system won't allow me the flexibility of going back & forth.

What makes you decide to have your setting changed? as in what kind of symptoms?

Somewhere I read about a trial done in the states where a selected number of patients were given their own programmer. Some changed their setting frequently, some only occassionally. I dont' remember the results, but do know some felt it helped them a lot.

I keep wishing my VP shunt system had an on off switch so that when I am going to upright for a long time, (and not near my recliner!) I could turn it off! But since patients often mistake over draining for under draining & vice versa, I guess I can understand why we don't have that feature. But I'd still like it :)

Cathy

[Jordan]

Hey Cathy!

Sorry to hear you're suffering. I have a programmable too (that new one with two settings; one for standing and one for lying down) and am still having problems! On my last programmable before this one (a Codman) I pretty much had all the settings too. But they found out that the shunt was generally overdraining when they went to remove it....so it wouldn't have mattered what setting they put me on...it would always have been too low. Now I'm underdraining at night a little (I think) but as you say it's SOOOOO hard to tell the difference between under and overdrainage symptoms sometimes!! I try and leave it as long as I possibly can before changing pressures (unless symptoms are really bad) as that gives me a really good idea of how each setting feels. Maybe you do need a different model? The one i have now isn't perfect as I said but it's early days and I can do more on this shunt that I could on the last. Good luck to you! :)

[Brandon's Mom]

If the programmable shunt isn't working, and you've tried all the different settings, the NS will have to replace it with another shunt. The surgeon will have the option of trying a different programmable or putting in a non-programmable one.

The way Brittany's NS decided what shunt to put in her, after we saw the programmable wasn't going to be the one for her, was to take her into the OR. He took turns with 3 different shunts, allowed them to flow and just watched to see which one flowed the best. For her, the best option turned out to be an LP shunt.

[CathyE]

But they found out that the shunt was generally overdraining when they went to remove it....so it wouldn't have mattered what setting they put me on...it would always have been too low.

Gee. This is what I wonder is happening with my Strata. Do you know how they figured that out? (I assume it was during or after surgery).

I have heard of people finding out their valve was not working properly only when the NS "gave in" & operated. Unfortunately my NS does not believe I am bad enough to warrant a surgery. :(

Not that I "love" surgery and it's risks. It's just that my quality of life is so reduced by my over draining that I can't even go out for an evening like to the theatre with my husband. When we (DH & I) visit relatives, I have to lie down within 1 to 2 hours. A lot of talking makes me very noise sensitive. Even my own talking, let alone a "party atmosphere" where the noise level gets quite high!

Anyway, thanks for your sympathetic reply!

Cathy
PS I do have frequent times when I feel OK. Just never for a whole day! Not even sure about half a day!

[Jordan]

Cathy, I think that sometimes surgeons don't realise themselves the full picture of a situation until you're in the operating theatre. I was overdraining badly...and we all knew it....but in the 4 months I had to wait for my surgery to replace my overdraining shunt with a new one, the drainage got so bad that my ventricles virtually disappeared...and my NS didn't realise how bad things were until he opened me up. Even the CT scans he said hadn't reflected an accurate enough picture.....I'm not saying that to scare you, just to let you know that sometimes surgery IS the only option if all other tests aren't coming up with the goods. I felt rough but I'm better now...but CT scans aren't always the answer. My symptoms then were similar to yours now...I'd keep pushing if you can. Underdraining is horrific but overdraining ain't no fun either! :rolleyes: Have you tried drinking lots of Diet Coke? I drank it by the pint glass before my op...I know it's terrible stuff but it had the right amount of caffeine to give me considerable relief on a regular basis from the overdraining. I'm still overdraining now (we think) but not nearly so much....maybe some are more likely to suffer overdrainage than others?

[Nathan]

I have heard of people finding out their valve was not working properly only when the NS "gave in" & operated. Unfortunately my NS does not believe I am bad enough to warrant a surgery. :(

Not that I "love" surgery and it's risks. It's just that my quality of life is so reduced by my over draining that I can't even go out for an evening like to the theatre with my husband. When we (DH & I) visit relatives, I have to lie down within 1 to 2 hours. A lot of talking makes me very noise sensitive. Even my own talking, let alone a "party atmosphere" where the noise level gets quite high!

PS I do have frequent times when I feel OK. Just never for a whole day! Not even sure about half a day![/QUOTE]


Cathy, I feel your pain. That is the situation I am in right now. My neuro has brought up shunt revision a couple times, but doesn't want to because I have had so many already. But I'm in the same boat you are. I have constant headaches, cognitive problems, light/noise sensitivity, etc.

I go by how i feel on adjusting the valve. If I get worse than the "normal" or start getting new symptoims (i.e. vomiting as opposed to nausea) I go to the neuro clinic and tell them my symptoms and they [B]usually[B] will reprogram my valve.

I hope you find relief soon,

Nathan

[smitty]

Hi,
My mom just had a third ventric, and a cyst drained, after surgery she initially did pretty well and then seemed to decline, so I asked for a Ct and the ventricles were enlarged so they had to turn her exsisting shunt back to 1.5(during surgery they didn't think she would need it to drain much so they set it to 2. (Medtronic programmable)Anyway, after the shunt was adjusted she did much better so now we know she needs both the shunt and 3rd ventric. Smitty

[CathyE]

If the programmable shunt isn't working, and you've tried all the different settings, the NS will have to replace it with another shunt. The surgeon will have the option of trying a different programmable or putting in a non-programmable one.

The way Brittany's NS decided what shunt to put in her, after we saw the programmable wasn't going to be the one for her, was to take her into the OR. He took turns with 3 different shunts, allowed them to flow and just watched to see which one flowed the best. For her, the best option turned out to be an LP shunt.

Oh how I wish this is how it worked in Ontario, Canada!

Our NS's seem to think if the shunt is working there's nothing to be done. I guess this is IF you have Communicating Hydro.

I see my NS today. I mentioned to a hydro friend I wanted him to rule out Chiari. Her response was "they don't like us suggesting things" and, I believe she is right. So IF I even get a consult as opposed to just my setting changed, I guess all I can do is confirm my symptoms and tell him I would feel better if I had an MRI with contrast done on both my head and spine. Because there has to be some reason I over drain (but not according to ICP monitoring). I say mine is "accumulative over draining", meaning the longer I am up over several days, the worse I get.

And lately it has been the intense exhaustion, pressure on chest, forced breathing and long deep "naps' from which I wake up very brain foggy.

I hope I can make an appt. for 2 months from now because probably my symptoms will change somewhat after having my setting raised. Having just written this, I guess it's best if I get my consult 2 months after the setting change.

I have a feeling I keep posting the same info. So forgive me if I am getting repetitive. I don't remember my posts like I used to :(
And I have difficulty reading a lot on the laptop.
--------------------------------------------

Anyway, getting back to Monicad. Did anyone help you with your question. I am sure Brandon's Mom's reply is a possibility, depending on your NS.

Monicad, I hope your problems get figured out :)

-mine too :D

Cathy