headaches with vp shunt
 

Hey guys! Its been a while since I've been on, hope everyone is well. My husband Dean, has a vp shunt, is still having the bad headaches and still no help. See a new neurologist tomorrow. Hope she can help. He is on Topamax 100mg and not helping at all. Trying for botox but insurance has denied once. Any suggestions?

Hey Lisa,
I too have a vp shunt, it was reviewed/replaced surgically twice last year, and things have not been good since. I've been trialled on all sorts of meds from painkillers, which work but knock me so badly I can not function, anti seizure medication, migraine treatments, which just put my mind in a fog.
I've tried accupunture, chiropractic therapies and massage. I've seen ENT specialists, eye doctors and attended a pain clinic. With very little success.

I have also tried Botox. I found the actual treatment quite painful. The injections were in my forehead, jawline and the back of my neck and shoulders.
My previous headaches were extremely intense, covering the whole of my head. Some people are able to define their headaches to certain regions eg frontal, posterior and types eg. squeezing, throbbing, I was not able to do this as the pain was 'my whole head'.
Since having Botox things have improved in that the headache at the back of my head has reduced, not gone, but reduced. The pain in the frontal area has not improved at all. The pressure I feel within my face is massive, like my eyes are going to explode.
I have been told my insurance will only cover if the treatment gives me a higher than 70% improvement. Unfortunately, at this point, it has not. I have been told that I can have one further treatment, then if that treatment does not give me the 70% improvement, the treatment will be ceased. I am not hopeful. I understand that Botox will treat the tension within the neck and face but I do not believe my pain is related to tension and I am running out of options.
I hope you and Dean have much better luck and although for some people Botox has been the miracle cure, unfortunately not for me. I do hope Dean's headaches are tension related as often the pain is beyond belief along with the stresses on my wife, which you would have an understanding of.

The very best of luck
Merl1n

Wow merlin I sure hope things get better with you! Dean experiences the same pressure in his head as well, eyes feel like they are going to pop. his headaches are all frontal and pressure, insurance just approved botox so we go nov 5th. stress always makes things worse. We are in the same position if this doesn't help then he will have to go to pain management, which he won't be able to work on all that pain meds. hopefully the botox works.
good luck to you
Lisa and Dean :grouphug:

Hey Lisa and Dean,
I truly hope the botox brings some relief and an avoidance of the pain clinic. Pain is a unique thing, nobody can feel your pain, your discomfort and some of the comments of "..well toughen up, princess.." to "...ohh you poor thing..." or "... we understand you pain..." are not very helpful. The last statement was said to me by a nurse in a hospital, whilst I'm curled up in bed, clutching my skull after a craniotomy. My first thought was "MURDER":rolleyes:. Understanding and coping are two totally different things.
As for the meds, they can be NASTY. I've been on some real strong opiates which I quickly become addicted too and have awful withdrawals from when trying to stop use. I have some strong sleeping meds but again if I use them for a week each night, the following week I can't sleep without them. I was always in a cloud of drug, I wouldn't drive, it just wasn't safe. It was just yuck. I work with people with disabilities, normally. But I can't be responsible for another person, I'd be putting both my client and myself at risk.
Now, I've cut back on the strong opiates, I still need codeine to manage but at least it isn't oxy. I haven't returned to work and have been told by doctors I may simply not be able too. This I am less than happy about. I am SO, SO very lucky to have a loving and supportive wife, sometimes I wonder why she puts up with me, as when I'm in pain I'm not very nice.
I use alternatives to medical thinking. I walk daily. We bought a hydrotherapy pool, I tried different forms of massage and other alternative medicines. I have found a combination that works for me. I can now manage my pain at a level where I can at least function and not be curled up in a dark room. This is a plus because at one stage I couldn't leave that darkroom during the day. As I say I'm not back at work and somedays that room is till needed but it isn't my residence. I have been pushing myself to do more but end up paying for it the following day and 'slowly' is not a word I know very well, but I am learning to pace myself better. I've been off work for over a year now and although the first month was manageable, now I'm just going stir crazy. I try to give myself tasks to do each day, a goal to reach. Early on these goals were high, too high and I get annoyed when I didn't/couldn't reach them. So I've reduced the goals to sizes I can now manage. Not tasks I could manage prior to all this.
Its all a case of management and the team you have behind you. That's the medical team for the medical side but also your 'family' team, those close to you for the support you need. AND YOU DO NEED IT. I didn't think I did but I truly would be so screwed without my support team. As for the pain management, I need meds. I have cut them right back to 'manageable levels' now and they end up being useless if I take them for too long, so I alternate between alternate and pharmaceutical and sure when it gets unbearable I use an opiate, but I have other ammunition in my arsenal before I need to go opiate.
I hope all goes well with your treatment and please let us know how you get on. I'm very interested in all other treatment options. Heck, if standing in the corner on one leg singing Kumbaya works as a treatment I'd try it. :D

Merl1n

Hey Merlin, I can understand the need for support team. We too have good support with family, but neurologist we don't care for, he is not there for us. Thinking of changing. Its almost like he thinks Dean is lying about headaches. He wont give him any pain meds cause they cause "rebound headaches". So Dean usually suffers, until the pain gets to a 9 out of 10 I have tordol shots I can give him from our family Dr, which he hates to use. God Bless your wife cause I know how Dean is crabby when he gets a bad headache, but trust me We love you guys or we wouldn't be here helping and supporting, and sticking by you, but that's what marriage is about right? the good and the bad. Dean has a new pain tonight right under his shunt behind his ear, he is at work but says there is no swelling. I hope its not the shunt catheter. Dean too can't do much or he's in the dark room for a day or 2. We put up Halloween decorations and he was down the next day. Just cant do what he used to. Luckily he is a boss at work and has been there for 23 years and they work with him or he wouldn't be able to work. but if he has to go on any pain meds he won't be able to, works around machinery. I worry about him every day he is there. Anyway we are praying that the botox works and like you said can avoid the pain clinic. I will keep you in our prayers. Thanks merlin, it helps me to just talk about it but no one around here really understands what he is going thru.
lisa

Hey Lisa,
Neuros can be such fun. Some are just university qualified @##$^*%^ in my opinion. 'We have a degree, we know your body better than you, we've fixed the problem, so its nothing we've done. It must be YOU!!'. This is why I've been going thru alternatives that I can do, differing ways I can manage. The other thing they came out with was that my pain was stress related, past stress, present stress AND future stress. Work stress and relationship stress were another couple.My actual surgeon asked me if I planned on suing him, which I have no plans on doing. In my view if they didn't operate, I'd be dead. The rebound effect is real and I know it, this is why I modify my medication intake, so my body doesn't become normalised to the meds. The last genius I went to see told me I was addicted to the pain meds and the rebound was why I am having pain. I know quite a bit about addiction and know the difference between head pain and rebound from experience, not a book, Good luck in finding a decent neurologist, one who will actually listen, they can be very difficult to find.

As I said previously pain is a very individual thing. I think the best advice is to 'be aware but not alarmed' I regularly get different pains. At first the wife would jump at each pain, now I wait to see what happens, if it increases then act, but not every pain needs instant attention.

I most definitely understand you finding it difficult to obtain people who may know or be in a similar situation. I too have found this a big dilemma. Lots of information on hydro, but very little specific. A large amount of info for children and hydro, but little for adults and little of specific pain.

Please do stay in contact let us know how Dean gets on after the treatment I've found sharing of experience to be very cathartic both in my own experiences and that of others. I'm often going "...PHEW, I'm not the only one..." This may sound selfish, but when you feel isolated by illness that understanding counts for HEAPS.

Merl1n

hey merlin~ thanks for reply. 1 1/2 more weeks for botox. we cant wait. hope it helps!! neurologist was cool this time, if botox don't help wash u may have a research group using magnets he can get into. hope you are doing well. your in our thoughts and prayers. thanks for listening and being a great influence on us.

Hey Lisa, Counting down the days I bet, my only recommendation is DO NOT put all your eggs in one basket. I too was hoping/wishing botox was the magic bullet, but not to be for me. If it helps, even a little, then this can be the bonus you both need. As for the magnets, I now have a programmable valve which is controlled by using a magnet. I had a magnetic underlay on my bed but after being fitted with this valve had to remove it from my bed. So the magnetic treatments are now a big NO, NO for me. I'm going to have another scan next week and a follow up appointment with the NS, but I'm not expecting any great resolution. I've found having those expectations then not receiving any resolution can be so soul destroying that I no longer develop such expectations, this way I can't be let down. It also means that if there is a success I can enjoy it fully.
Best of luck and best wishes for the Botox being a HUGE success. Let us know
Merl1n

Finally botox!!
 

Hey Merlin~
So He got the botox today, said it wasn't too painful, no side effects so far. Neurologist said it would be 2 days to 2 weeks to see any results. So we keep our hopes up and fingers crossed that this is his cure! Deans shunt is adjusted by magnet too but neurologist said this would not effect it:confused:. I thought that kinda strange as well. well thanks merlin, I wish you all the luck at your up coming appt.:)

Hey Lisa and Dean
Well, not to sound rude or insulting but Dean you're one lucky bugger having little to no pain, mine stung HUGELY, brought on a huge pounder of a headache afterwards, that lasted 2 days.
I'm jealous :D I do admit that eventually there was some reduction in the pain at the back of my head, which lasted a couple of months, but the pressure/pain behind my eyes remained. Since then though the full blown headaches have returned. I was told by the n.s. that the shots were 4 monthly, so now I wait.
The patient just before me came out of the surgery saying she could feel the benefit straight away, which I was real hopeful about. But the n.s. also told me 2days to 2weeks, mine took about 4 days. The n.s. said to that some patients have a bit of a placebo effect and this may have been why that particular patient stated she had an immediate effect.
Hope you get a decent long term relief. I have heard of some really good results from the treatment for some people. Hope you are one of them

Merl1n

botox worked
 

:Dwell its been a week and for last 2 days no headache!! :D hopefully we found the cure for him. I only hope you have as good a luck!! keep us informed
:hug: lisa and dean

Hey Lisa and Dean,
That's great news, hope it continues. I've been to see the NS this week, had ct scans prior, they told me that it seems more fluid is being retained than I need and the ventricles are again expanding. They altered the shunt settings and although the mornings HA have shown some improvement the evenings HA have gotten worse, off the scale worse (which I was hoping wasn't possible). I have been told and have read that it can take a week to 10 days for any such adjustment to settle and take effect, 10 days of this and I'll be ready to kill (joke)(well sort of).
When they first inserted the shunt I had bad HA for about 5-6 months, this time round its been about 2 years and still no light at the end of the tunnel. But then I remember a lady who was in hospital at the same time as me. She had had major complications and infections and was in a much worse state then myself. So as bad as it may seem, it could be worse.
Dean I'm glad you've had some success with the botox. Long may it last.
P.S. If you ever feel the need for a HA, just ask I could donate you one at anytime, free of charge. :D

Merl1n

Hey Lisa and Dean,
So, I've been and had 2nd botox, had scans and seen NS again. Seems this is as good as it gets, which is disappointing/depressing to say the least. Hope all is going OK on your end
Merl1n

Ha's back
 

Hey Merlin
Hope You r doing a little better..The botox really helped Dean but Dean's insurance has change & new will not cover the botox..so we r going to talk to a plastic surgeon about this (I think) its a nerve decompression surgery...not sure if he is a candidate or not or if insurance will cover but its worth a shot, his ha's r back real bad. Hope You can get some relief from that botox :)

Hey Lisa,
Ahhhh that's disappointing for you both. Me?....well in technical terms I'm screwed. My HA has not improved, if anything has gotten worse. Dr's have not given me any answers, they want to point the finger at me like I enjoy the HA, "it's psychosomatic.." like I'm imagining it, a figment of my imagination, I wish it was, then I could just figment it away. My income protection insurance runs out this month, it only lasts 2years. So now I'm really up to my eyeballs in it. I'm trying for disability but when the dr's have 'fixed' the problem then the problem is me. So disability won't pay. ahhh What fun? NOT. So yea, as I say, I'm screwed

Merl1n

Well Merlin that sucks and am truly sorry to hear that..maybe once we talk to plastic surgeon maybe you would b a candidate for this procedure too. but you have to have a positive outcome to botox. I hope everything works out for you!! Hang in there :grouphug: You will be in our thoughts and prayers. maybe try new neurologist, im thinking bout that for Dean. Its in gods hands.

I've gone down the path of trying different neurologists before and unfortunately they all talk to each other. I saw an ophthalmologist who reckons it maybe scar tissue that is the problem, but my GP does not agree. It seems scar tissue is made up of collagen. The brain tissue does not contain collagen. Scar tissue within the brain tho does cause seizures and I'm not having seizures. So I have one specialist telling me one thing and another telling me the opposite. Nobody seems to have any answers other than the problem being me. As for the problem being in god's hands, I went to a Catholic boarding school and after that experience I can confirm there is no such thing as a god, cos if there was there would be no such thing as a catholic boarding schools. Sorry but that's my experience.
Merl1n

Sorry Merlin if I offended You...I'm sorry You had such a horrible experience. Dean went to a catholic gradeschool and doesn't think much of the church anymore either....How are You doing? I'm worried about both You and Dean. no word from insurance co. if they will cover surgery so it's a waiting game..in the meantime dean suffers. we are going to ask for a referral to a new neurologist, will c how that goes. His neuropathy in his legs has really flared up. Has a hard time walking. I hope something has changed for the better for you. Thinking of you. Lisa and Dean

No offence taken Lisa. Yea, religion and education should never be mixed imo.
Anyway, things aren't good. My friend pain seems to have setup house. :mad: Been back to see neurologist, he's the botox man. He told me if I didn't have an 80% improvement from botox, it wouldn't be funded anymore. Now he's changed his diagnosis from migraine to cervical dystonia, so the funding can continue. So now that's just another diagnosis to add to the list. None of these 'specialists' really have any idea. Each dr I go to see tells me something different, but nobody is pointing at the shunt as a cause. But I just have to go with the flow, do as I'm told, follow their advice cos otherwise I'm not following medical advice and that puts a big red 'X' next to my name. I just want to get back to work, but that ain't happening. Tsk. Damn headaches
Merl1n

Ya Dean feels same way damn headaches! we are trying to c new neurologist but nothing happening so far. Still waiting to c if the surgery is covered by insurance. They have 90 days to drag their feet :mad: In the meantime headaches are worse than ever since botox has worn off. Has fallen 2 x's this week. Dean is really getting depressed cause the headaches just never go away. Hopefully we hear something soon. Hang in there Merlin!!

'Hanging in there' is about all I can do. I try to keep myself motivated. I find if I sit and think about the pain or allow it to take priority it is as if I'm encouraging the pain. Please tell Dean that he is not the only one battling with the "Black Dog" of depression. I go there regularly. Pain is a strange beast. If someone has a sore leg they limp and you can see their pain. But a damn headache is so very unique, individual and isolating. I find some people trying to empathize with statements like 'oh headaches, yea I get headaches occasionally' and I want to say 'Not headaches like these ya don't' or 'headaches occasionally, oh that'd be nice' but I bite my tongue and just agree, when what I'd like to do is grab the person, shake the daylights out of them and tell them "YOU HAVE NO BLOODY IDEA!!!" But you can't do that so you internalise it, which can be even more destructive. This is why I find I need to keep myself occupied. I can stir myself into such a mess if I just sit and think. Just awful. I can do this by myself, the judgement of others just gets me there quicker. We had a family gathering and my nieces husband was giving me a hard time because I had a headache "It can't be that bad". Two weeks later and he's off work because of a sore leg. For some reason he didn't appreciate me telling him "it can't be that bad", then I reminded him of his own statements weeks earlier. He did not like that, but he hasn't made any statements since, so maybe a dose of his own medicine had the desired effect.
Dean, you do learn to REALLY enjoy and cherish the good times while you can, because only you truly know how bad the BAD times can be. Good luck with the NS or doctors in general, some of them can be extremely difficult to work with, so if you find a good one, grab hold and don't let go.
Let us know how you get on.
Merl1n

I hope you don't mind me jumping in here. I joined the forum last week and posted a question in this section, but it seems like you would have thoughtful responses for me given your experiences. I don't want to hijack this thread, though, so if you'd rather check out the "Is is worth trying again?" thread, that's mine.

One question that came up for me when I was reading through this thread was whether either of your (Merlin & Dean) shunts are the anti-syphoning type? When I called the hydro association the woman I spoke with asked me if that had been the case with the one that the NS implanted and removed. I don't know if mine was, and I don't know if it would have made a difference. All I really know is that the NS dropped me like a hot potato and that my symptoms are getting worse and worse; my latest fall injury was a dislocated collar bone at the SC joint. Between the falls and my cognitive decline (my wife helps me with stuff like this, btw), I'm feeling increasingly vulnerable and scared.

Hey Tecari,
I don't mind ya droppin in ere, if you've got questions then please ask away. I don't have all the answers, but if I can answer, then I will.
Unfortunately you'd have to ask a NS if yours was antisyphon, mine is now but it took them 7 surgeries to decide to add one eventually.
I have found the medical neuro community very difficult, as in, 'we are the dr's, we know better than you, so don't you dare question us'. Often it can be better to get your Dr to ask the questions of the neuro, in writing. It can all be very scary as the patient and if you are not getting acceptable answers, then that can exacerbate the fear. But often the neuros/medicos don't seem to understand this. But if you are having falls then you must follow it up. Can you get a referral to another neuro or a physician to investigate for you. At least that way you'll have someone doing the 'hunting for an answer' for you.

Merl1n

Hey merlin and tecari. I don't mind u dropping in on us tecari, glad to hear from u, I agree with merlin u definatly need a new neurosurgeon! R u on any seizure meds? Dean was really bad when he was on them, falling and stuff. Merlin hope u r doing well. De'an has been referred to a behavioral medicine institute, which deals with chronic headaches and the depression that comes along with the shunt. He is very hopeful. I hope they can help him. We r both getting to the end of the rope. Appt is the 17th. Tecari good luck to u!

Hey Lisa, Dean, Tecari,
I have an appointment with what is called the pain management clinic here, which sounds a bit like your behavioural Medicine institute. I have a bit of a concern with it tho as from all reports they point the finger at a psychological problem as a starting point. My very first appointment is with a head shrink dr. Its taken them 2yrs to make an appointment, so I'd better attend or they'll say I'm a non cooperative patient (again). I'm not expecting any miracles, in fact I'm expecting them to comeback at me with psych meds because, as one dr put it "you can't be in that much pain, you must be unstable" TSK
So I go along to their appointments and go '...yes sir, no sir, three bags full sir...' and then manage the best way I can.

Please tell Dean not to take their judgement too much to heart. In the beginning I took it very much to heart and it got me way, way down. I must admit almost to the end of that rope. That was when I decided I have to manage this for me. Not them. Their information is useful but to think they have ALL the answers only lessens your options. Try to think outside the medical box. I use massage, hydrotherapy, relaxation techniques, alternative medicines and in combination I get some relief. As they say "Don't be putting all your eggs into one basket", use the whole arsenal at your disposal to your own benefit, whether it's medically approved or not. If it works, who cares what the dr's think, if they can't help, then help yourself any way you can IMO.
Merl1n

Hey guys. Hope you are still around on here. I have hydro and just had a a VP shunt put in. My shunt is a Codman Hakim programmable shunt. I was wondering what type of shunts you guys have? Also what pressure are they set at?

2 weeks after having surgery I went back to neurosurgeon to have my first check up. My symptoms were exactly the same as before the surgery. He adjusted my valve down another notch and I began having horrible headaches.

I saw him a couple days later and he raised it back up and I haven't had any headaches since. I'm still not 100% but I think I'm slowly getting better with each adjustment. I have read that I'm your pressure is too low that you will get low pressure headaches. So I'm just curious about what pressure you guys are set to?