ICP monitor --- any input?

[paradice15]

Any info on this procedure would be greatly appreciated! I have several more MRIs scheduled, then my neurosurgeon is recommending this monitor. Since I did not realize there could possibly be any other diagnostic procedure that I had not undergone in the past 3 years, I did not question him about this one. So please help me out if you can!!
Thanks -
Marianne

[hemyinspain]

Hi Marianne
I had ICP bolt pressure monitoring done last october/november. They placed mine just behind the line of the forehead on the right hand side of a centre parting in the hair.
they shaved a small amount of hair where they placed the bolt.
I cannot tell you about the proceedure itself as I decided to have a general anesthetic as I was too petrified to let them do it under local.
My readings for the first few days were very high so the neurosurgeon decided that the wire was probably faulty and replaced this on the ward. I then had a few days of readings between -5 and 10. Predominantly below 5 for most of the time. I was laying down most of the time, or at least resting on the bed as i was attached to a mini laptop constantly.
the area was a little sore but not unbearable, they removed the bolt after 7 days again under heavy sedation.
They have decided that upon the results of my bolt readings I have migraines, although I know without any doubt whatsoever I do not, and I know I am leaking. But thats another story.
Also I believe that if there is an issue with CSf flow, then this can affect the readings so whilst I was told it is a good tool at diagnosing leaks, it certainly isnt the be all and end all of tests.
Good luck with it. And with the rest of tests. I hope you get the answers you need
Sarah
xx

[paradice15]

Sarah -- Thank you for responding so quickly.
I was told today that I would be in ICU for 1-4 days, depending on my readings. This threw me, since only VERY sick people are in the ICU! I may sound crazy, but these headaches are a roller coaster, and when I am headache free, I feel this procedure is only for those who are totally disabled and prone a good portion of the day. My dilemma is taking so many pain drugs several times a day -- what it must be doing to my body. I fight each pill I take, but eventually the pain wins out. My neuro has been very supportive, but feels I am not a drug-dependent type of person, so I should "give in" when I need it.
I know I am rambling, but does anyone else face the choice of going forward to get more answers, or just taking the meds and controlling the pain? My initial CSF leak was diagnosed 3 years ago, and for 7 months I went thru hell and was completely disabled. So I can recognize the ha from a leak vs what I am experiencing since. My neuro feels I may now have an intermittent leak, OR it could be a vascular problem from the blood clot in my brain that I threw with the initial leak. His feeling is that this ICP will determine where the problem is, but as you note, these tests are not infallible.
Sorry for this long explanation, but it would be so comforting to get a definitive diagnosis, and I almost want to just go forward with this test. Then again as you note, we know our own bodies, and it's easy for a doctor to just put down a general category for the headaches when we feel otherwise.

I wish you well with your "migraines", and hope you get answers soon.
- Marianne

[hemyinspain]

Hi
Wow ICU??? The thing is that if they want accurate readings, espcially upon getting up, sitting etc how can they then say the readings are accurate if you are laying down the whole time? It doesnt make any sense to me, surely myelograms or cisternographies are better with delayed imaging in order to see the changes in the flow when one is mobile. I was diagnosed with a leak in 2008 about 10 months after my initial leaks and repair surgeries. this was diagnosed with delayed imaging on radionucleartied cisternography over 72 hours. However a few months later a second cisternography with imaging over 24 hours and my being on complete bed rest for 10 days previously showed no leak. When are they planning on doing your ICP bolt? I do think it is worth asking/mentioning about the fact that you will not be mobile during the readings so therefore what would the difference be if you were.
I did a three month period of no drugs as was told my headaches were definately contributed to by drug overuse. The headaches just got worse. I now take very few pain killers as I dont find they help, I hate the side effects and to be honest if I do manage to mask the symptoms with pain relief then the doctors say that I havent got a leak! so I cant win either way.
after 2 years of a very few tests in the UK, they will not accept I have a leak nor will they do any of the more definate tests available. So I am waiting to see the outcome of an application to the exceptional treatments committee for a referral to Dr Gray. I know they made the decision last week but I havent been informed as I have to have that information from my neuro. I am going to ring again today.
What we all want, and have a right to is an accurate diagnosis and treatment plan, what we do not deserve is to be treated as if we are attention seeking, imagining things, or simply that we are wrong and we dont know best.
I cannot say how desperate I am to get a neuro on my side, one that will listen to me, accept I do know my body and give me the respect I deserve. I need to know that this awful head (not to mention my back and leg pain which is also constant) has an end date. Or at least all will be done to give me some relief. Right now NO ONE will do ANYTHING.
I am glad that you have a neuro who is so supportive, you deserve that. I hope that you can get some definate answers. x
I am getting very scared of my mental state again, I fought for a long time to get better and stronger mentally, but being in the NO, go away, brigade once again is dragging me down to a very desperate level. But of course, the doctors then use that and say Im physcologically ill and I havent got a leak, its because Im unstable, so i cant win either way!

[paradice15]

Sarah -
I hear your desperation and obvious frustration, and can only send you prayers and say hang in there- hopefully you will find answers soon. Do NOT feel you are cracking up -- chronic pain is so debilitating. Perhaps you can see a psychotherapist, as I am doing. I just vent to him, and it comforts me immensely!
Continue to press for the trip to Dr. Gray!! The squeaky wheel...
My neurosurgeon told me he is in awe of the comprehensive workup she gave me at Duke University Hospital - and this from a dr at a very prestigious teaching hospital in NY! So I am confident she will be able to help you, and hope you hold on to that hope as well.
Please keep us informed --- there are many here who care!
Best - Marianne

[hemyinspain]

Hi marianne
I saw a counsellor for 15 months 4 hours a week! she was amazing, saved my life. That is why I now know that my physcological issues are not the cause of my headaches. I use a lot of the things I learned through her with CBT and other coping strategies.
You didnt say when your ICP bolt is scheduled for?
Good luck
Sarah

[paradice15]

Sarah -
What is CBT?
I'm learning distraction techniques, and adaptation, which certainly help me!

We are discussing my ICP next week after I undergo 2 more MRIs with contrast. I've had so many but each surgeon wants his own, I guess. Seems like a waste to me, but that's the protocol.

Thanks again for your concern, and I hope you have a good day today!
- Marianne

[hemyinspain]

CBT is Congnitive Behavioural Therepy. Used a lot in Post Traumatic Stress disorder which I was diagnosed with after my one and only failed blood patch. the neuro couldnt even get the needle through the scar tissue despite attempting various places in my back over 1.5 hours. It truly was the most traumatic experience I have even been through. Akin to being ***** or personally violated.
Distraction techniques are good. I learned to throw my mind back to a good memory, and have a silly little thing I do with my hands to take me back to that memory when i get panicky or overwhelmed with my emotions.
Please let me know how you go on with the discussion re ICP bolt, I would be interested to hear their reasoning and methodology and especially why the ICU.
Do your MRI's show anything?
I hope you have a good day too. We have had *******ial rain all day and Ive done nothing, which is good for the head but crap for the monotony of life! Then again I dont do a lot anyway after about an hour or so of being mobile in the mornings Ive started to rest the rest of the day. It does help but its no life.
xx

[LauraL840]

My opinion on ICP Monitoring:
ICP bolt pressure monitoring for LEAKERS should include a different protocol than that which is normally used for ICP monitoring. Protocols should allow you to 'live' a fairly 'normal' lifestyle while inpatient. Meaning, lay down only to sleep at night, spend most of your day sitting and or standing. Walking around, bending over to tie shoes, etc. You see, if they cannot get a realistic picture of what your pressure is doing NORMALLY when they monitor, the results will be inaccurate. If they put you in ICU and make you lay on your back for 4 days your pressure(s) will be fairly consistent and fairly normal (unless they are really really low). Most NS don't understand this .... most NS that choose ICP monitoring are not monitoring LEAKERS and don't understand the dynamic changes that occur with NORMAL daily activity that influence head pain.

[hemyinspain]

That is exactly what I believe too. Laying down as we all know improves our symptoms, so therefore surely improves the pressure. Just a waste of time, money and also unnecessarily causing pain as if we havent got enough. I lay in my bed all the time and was only really sat up to eat, and then when the doc came round on the ward on the last day he said ok, stand up for 5 mins. I went from laying down all night to standing up for 5 mins and the pressure dropped extremely slowly. He said if you have a leak it would have dropped very quickly. I said not if I have a slow leak it wouldnt. he said he knew best and that was that. Why cant they get this!!!

[paradice15]

You are both so on target! Just like when my LP was done, and the opening pressure was completely normal. Well, of course! I had been lying still for almost an hour while being prepped and filmed, etc., so what is so difficult to understand!

In addition, I have to go thru another brain MRI with contrast next week, when my last was done only a month ago. So I suggested we do a Standing MRI this time - perhaps getting a better visual of whatever they search for, when my headache is being triggered. The NS said that was a brilliant idea, and jumped on it. Now why do I feel this should have been his idea?? Maybe those of us going thru this have a clearer understanding than all those talented doctors we count on. Scary!

Sarah --- there is also such a thing as an intermittent slow leak, where you have symptoms for a bit then they recede. At least that's what I have been told by several of my neuros. I think we deserve a medical degree, don't you?? lol

Good luck!
Marianne

[sadlisa]

Hi Marianne

Let us know if there is a difference in the findings with the standing MRI. Since my symptoms are always worse when working I would think it would be better to have and upright MRI done too. Will you be active before this scan? It will be interesting to see if brain sag shows up in the upright position.

Keep us posted, Thia

[paradice15]

Thia --
I will definitely post the results of the Stand Up MRI, since I have shown no brain sag at all in my prior brain MRIs.
My headaches are particularly triggered by riding in the car, and this facility is 30 minutes from my home so I am expecting, and actually hoping, that one is triggered by the drive.
Unfortunatly, it is being done very early in the morning, when I'm at my best. The worst pressure comes after I am vertical about 1 1/2 hours. So maybe I'll get up earlier just to get the best situation.

Nothing like trying to bring it on! I am still doubtful anything will show, since I've heard the Standing MRI is less precise than the normal lying down test. We will see!

- Marianne

[Robbysmom5]

Good luck Marianne! For ICP bolt monitoring, they do need to drill through your skull to place the bolt on your dura ... it is invasive and thisis why you will be in ICU. As Laura said, it is normally done to test high pressure patients, and I am not sure how great it is for leakers .... would depend upon what you do and how they interpret results. (Worth discussing w/ the nsg beforehand.) I forgot, but when your headaches come on, does lying down help them? does just sitting still help them? If you stayed lying down all day, do you NOT get headaches then? Do your headaches ever go away without taking the pain meds? I know Dr. Gray did see leaks .... but I (like your nsg) also wonder if this is what is giving you the headaches. Sooooooooo frustrating!

[hemyinspain]

I really look forward to hearing the results Marianne. Personally my worst position is sitting, then going from sitting to standing, shame they cant do MRI's of that. All my mri's have come back normal, but then Im always laying down! I feel quite normal laying down anyway! If and when I get up, then decide to be mobile for a while, say to prepare dinner, go outside and see the dogs, drive to doctors (driving is horrid especially over bumby roads even tho my car is automatic everything) then my head starts to get worse. Being stood up straight from laying down isnt so bad and I can manage an hour or so then my first symptoms are my back and gradually get worse, especially my backache and my legs. The worse my back and legs get the worse my head gets. Then I sit down or rather lounge on the sofa, and then going from sitting to standing is awful.
One thing I have also noticed a lot lately is the pain in my legs being so much worse at night, cramps and just generally irritable legs once I lay down. Takes me ages to get to sleep despite sleeping tablets. Does anyone else have this?