I thought it would be worth posting on here as there is quite a big collective of chiari patients on this forum,
I just wanted to share my girlfriends story in hope that somebody might be able to suggest something or give some
We are from England and all the procedures etc have been carried out at Walton Nuero Hospital near Liverpool
around 2.5 years ago my girlfriend started getting headaches and would randomly lose consciousness and vomit.
It started off quite slow she was 18 at the time.. but it would start with headaches.. and then she would suddenly be violently sick but faint in the process.. we went to the doctors and hospitals every time (my girlfriend lived at student accommodation as she was study to become an infantry school teacher so because she was on halls it was the universities policy to ring for an ambulance everything an occurrence happened) now we started to realise their was a bit of a pattern forming and we must of spent 5 - 6 weeks of her time in and out of hospital getting told that its stress, its in her head etc etc its a virus.. its this its that.. university life has hit her hard etc etc. basically we were being fobbed off, it was hard to get anyone to believe it was becoming severe.
It started getting to the point where she would get no warnings what so-ever you could be talking to her and then she would just hit the floor like a rag doll, she could do this from 1 up to 20 times a day form 1 - 3 minute intervals upto 30 minutes.. in most cases it was impossible to wake her, one night she fainted and hit her head on the side of a table so we were back in hospital, at this point we refused to have her home we kept getting told they need the bed for serious patients etc but we refused. So they kept her in for observations and indeed witnessed the fainting so they started doing checks etc.. But came back to us telling us its in her head.. its her state of mind not physical etc.
she was in the hospital for 4 weeks, them whole 4 weeks we were fighting with the doctors to not discharge her and keep her in or we would go legal the usual stuff anyone would do in our situation.
One day a specialist neurologist from walton was in the hospital seeing to his referrals and we caught wind of it.. so we demanded he took a look at her and to be fair to him he gave her his time, its amazing what doctors can do, at this stage of our lives id been with my girlfriend for nearly 3 years and in those 3 years of knowing her she would randomly hiccup just once.. It would be this exaggerated hiccup as if it was being acted out and we use to laugh it off.. now during conversation with this neurologist she did it.. and his face lit up, he had a hunch that she had chiari malformation and ordered this hospital who was trying to get rid of us for over a month to carry out an mri scan.. the results came back and he told us he was right and he could help.
We were then referred to Walton for the first time.. she went in there and had a icp monitor put in and it went of the scale whilst she experienced fainting. So we were told they would like to try a shunt on the brain diverting fluid to the stomach, so we went for it, finally something actually made sense and it felt positive.
Everything went fine with the operation, she was moving around 6 hours after and home 2 days later to recover, we managed to go 6 weeks and one day she started getting ill again and the fainting began, we got in touch with walton and they advised it could just be her body adjusting etc but it started out small and few and ended up with my gf spending most of her day unconscious, so back we went. They did scans etc and the neurosurgeon (Mr Brodbelt) decided he wanted to have a look at the shunt as they can go wrong for whatever reason) so he replaced the valve on the shunt as he said it wasnt draining properly but now it was.. again surgery went fine and away we went and 6 weeks later it starts again. So this time he decided he wanted to put a programmable shunt in so that he could change the pressure as he explained my girlfriend wasn't as straight forward as some cases of Chiari can be, shes very sensitive to pressure which ever way it is set, either too high or too low she has negative impacts and that she has very very small ventricles so its hard to position the shunt.
Over the next 6 months she had an operation every 6 weeks but in those 6 week gaps she didnt experience any symptoms,- the operations werent always the same, they would be to relocate the shunt from one side of her head to the other, front or back its been in all positions, then its had valves swapped etc. By this time she was told to leave university because they cant have her being ill unless she can provide a medical letter stating that she had been free from faints for some time.
Operation number 8 they decided to do the decompression surgery, again all went fine with this and 6 weeks later she gets ill again. Now by ill i dont mean headaches, the headaches she would be happy with although they are severe enough for her to be bed bound alot of the time its the fainting that worries her/us the most, the whole time this was happening iv'e found her unconscious in many different scenarios and each time i walked in on her id look around and think to myself, what if she landed that way? what if she hit her head on that?.
She had the shunt renewed yet again which bought us 6 weeks and they re positioned it by this time as im sure you have already realised we started using the 6 weeks as a relief point, if she made it past the 6 weeks without symptoms then its the best thing that could happen, a sign that we are getting somewhere.
I was in work one day and i get a phone call that she had been rushed to hospital, she had fallen down the stairs, she told me she was cold so she went upstairs to get a jumper and thats all she could remember next thing she knows she was at the bottom of the stairs in a tangle, luckily she had only badly bruised her arms/legs but as i knew sat there waiting to hear from the doctor, she could of jolted and snapped the shunt etc so off to walton we went. He revisited the shunt site again, made sure it was draining and did a series of xrays down the piping, let her go home a few days later.
We are now 2.5 years down the line and 13 operations in and she is as im typing on the hospital ward in agony with headaches, vomiting and fainting in-between and taking oramorph injections to take the edge off every time shes able to have it. This time round we didnt let him convince us operations are the way forward we have asked the, "what if we get a 2nd opinion" question as she cant continue to live her life like this, these last 2 years she has had no life she cant be on her own outside because of the fainting and with it being such a unique condition we know that each surgeon has different methods so we question if mr Brodbelts are the right ones for us? (He has done right by us, he gets things done. We have never had a single issue with him) but we have to do whats right for her.
So today they come to her and have told her he wants to double the pressure (hes spent the last 2 years lowering it) and see if she still faints as that is his main concern, if she doesnt faint whilst the pressure is that high he will get the pain management team to speak to her and provide her with some sort of daily routine to combat the headaches and all i keep thinking is, if shes rolling around clutching her head crying in agony whilst the pressure is set to what it is now, surely doubling it will make things twice as worse?
He has also said he wants to relocate the shunt from her head to the spine? And that is something we havent looked into and quite franky scares us, I was hoping somebody with experience could tell us how it affects daily life? some of the risks are obvious to us but are the risks common? Just looking for more information, sorry for ranting on.
WOW, first, thank u for being such a devoted BF and being an advocate for u GF...so many with Chiari can not get the partner to believe them, they tend to listen to the Drs that blow us off....so again, thank u on ur GF's behalf.
I have never heard of using a shunt first when chiari is present...do u know if a CINE MRI was ever done?
Did they do a MRI after her decompression surgery to see how things r healing?
And do u know what all was done in her surgery? IE- lamenectomy, dura plasty?
All Drs tend to do these a little diff .....so, it helps to know what was done, and what was used for say the dura patch.
Many with Chiari can also have ehlers-danlos and have issues with foreign matter, so a shut or dura patch can cause more issues.
Shunts can get clogged as well as malfunction, but they can also cause more CSF to be produced.
Just the decompression surgery can cause ICP or POTS to develop post op as well as other issues and conditions....
She should be tested for ALL related conditions....syringomyelia, tethered cord, Ehelrs-Danlos, ICP, POTS< sleep apnea....
And it is also possible that too much bone was removed during decompression and cerebral ptosis is possible too. And if she has an underlying issue even that can cause the HA's she is experiencing....cerviocranial instability can also be an issue...have they tried a neck brace to see if there is pressure on her brain stem from her head?
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