Helen still in hospital, no improvement...

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Helen still in hospital, no improvement...

Postby emmacos » Fri Apr 20, 2012 12:46 pm

Hi All,

Just wanted to update you... Helen is still laid up in hospital and there is no improvement - she is only getting any respite from the head pain when she lies down - when she sits up the pain comes back... She's not at all well and feeling quite sick and having sickness injections too. There's obviously something definitely wrong - these aren't just headaches! She can't function at all!

I sent her mri scans to a neuro surgeon in Birmingham who specialises in cm/sm earlier in the week, and he rang to speak to the NS she is under at our local hospital, even leaving his home and mobile telephone numbers, but the NS here wouldn't call him! I was furious - still am!!! This man was trying to ring to give his opinion on what is wrong with our daughter, and gave his personal telephone numbers, so he obviously has something important to say, and the NS here refused to speak to him! I have been so upset today, not knowing what to do...

Before we've left hospital tonight we've had a meeting with the NS registrar who was sort of explaining that the NS felt we were over riding him by asking for a second opinion from another NS and that it is unethical! I explained that I sent the scans before Helen had even been seen by this man, and that our only concern is to get the best opinions and help for her that we can, as she is so unwell.... we have said again that we want this man's opinions to be heard....

Anyway, its weekend again now, Helen has been been laid up in hospital for two weeks already with nothing done! Next week they plan to do some pressure monitoring by putting a monitor into her head and leaving it there for 24/48 hrs to check whether she has low pressure... they say if she has they will look for a leak, and if not there will be nothing more surgically that they can do!

I feel there is something definitely wrong, and needs to be found. I wonder if she has cervical instability or something like that - this is why I feel she needs to be seen by a cm/sm specialist. I am in two minds whether to take her out of our local hospital and take her to Birmingham to see the other NS, but she is so unwell I would feel bad taking her out of hospital, and we would probably have to wait for an appointment. It is just that I don't want them to do the wrong thing and possibly make her worse!

I feel like we are living in a nightmare at the moment!

Has anyone else had any experience of these kinds of horrible constant headaches, especially when sitting or standing up. Sounds like low pressure to me, but they don't seem to feel that it is!

Emma.x
(Mum to Helen, aged 20, cm/sm, decompressed Oct 2004. Manchester. England).
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Re: Helen still in hospital, no improvement...

Postby June » Fri Apr 20, 2012 10:18 pm

I don't know if this if helpful or not, but I had a terrible headache after a test caused a leak in spinal fluid. A blood patch took care of the problem--very simple, so must be different from your daughter's problem.

I'm really sorry you are going through such a hard time and hope you get help soon.

June
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Re: Helen still in hospital, no improvement...

Postby emmacos » Sat Apr 21, 2012 4:55 am

I think the idea of them doing the pressure monitoring next week is to see if Helen has low pressure, and if she has, to find a leak if there is one... I just hope they find something and can fix it. This head pain isn't just a regular headache! She can only lie down to get any relief!

Emma.x
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Re: Helen still in hospital, no improvement...

Postby razzle » Sat Apr 21, 2012 11:45 am

emma I sent you some stuff to read on FB did you get it
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Helen still in hospital, no improvement...

Postby emmacos » Sat Apr 21, 2012 12:14 pm

I'll have a look now Roz... I dont go on facebook much! x
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Re: Helen still in hospital, no improvement...

Postby emmacos » Sat Apr 21, 2012 12:19 pm

Hi Roz - Are you showing me that because of the TCI lawsuits, or because of the bit about connective tissue disorders...?
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Re: Helen still in hospital, no improvement...

Postby razzle » Sun Apr 22, 2012 3:41 am

connective tissue
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Helen still in hospital, no improvement...

Postby emmacos » Sun Apr 22, 2012 4:23 am

I was wondering the same to be honest! Thanks.
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Re: Helen still in hospital, no improvement...

Postby phyrehawke » Wed Apr 25, 2012 6:20 am

I think I would flatly state to that Neurosurgeon that getting a second opinion is NEVER unethical. Letting one's ego get in the way of listening to another expert's opinion IS unethical. This is about Helen's best interest and best care and making her better as quickly as possible.
IMO (former nurse) a doctor with issues like that doesn't have his priorities straight. He's already making bad decisions for the wrong reasons. Maybe you need to listen really hard to the neurosurgeon who was willing to give up their personal information to help your daughter get better. That doc cared...enough to risk personal rejection. That's not actually what they get paid for, and a lot of them won't take that kind of risk personally for patients. So that's probably the "keeper" of the two docs.
Just my 2 cents worth,
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Helen still in hospital, no improvement...

Postby pmaxwell » Wed Apr 25, 2012 10:28 am

Emma,

Just wanted to see how the testing went and if they found results. best wishes to Helen.
Together We Can...
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Re: Helen still in hospital, no improvement...

Postby emmacos » Thu Apr 26, 2012 12:35 pm

Hi, Well Helen had the icp monitoring this morning and she's hooked up to the monitor now for 48 hrs. She says her head is really painful now, but I suppose someone drilling through your skull isnt going to make your headache any better is it?!

Yes Rozanne, when we get Helen out of this hospital I'm taking her to see the NS who was willing to give his personal time to speak to the NS in the hospital where she currently is laid up in bed. He sounds a lovely man, and I just hope he can help her. The NS she is seeing in hospital now is not a nice man, and has a huge ego!!!!

Emma.x
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Re: Helen still in hospital, no improvement...

Postby toport20 » Thu Apr 26, 2012 9:05 pm

Emma,

I'm sorry you've had to run into doctors that it seems ALL of us have had to go through several before we find one that works for us. I wish I could give you advice in England, but I have only had doctors in the US. Best wishes, and good luck!
Pre OP:
SM 3mm C3-L1
Tonsillar Herniation 5mm due to TCS
TCS Surgery TCI 6-6-08
ICT 6-7-08

Post OP: 2011-MRI
CM 8mm
SM C2-C6 9mm

PFD done in May 2012
Arachnoiditis found
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Re: Helen still in hospital, no improvement...

Postby reedy » Fri Apr 27, 2012 2:41 pm

Hi Emma,
I'm so sorry to hear that Helen is in this terrible trap. I had a similar situation 12 years ago with the original infection that ultimately caused my syrinx. I had a doc who wouldn't communicate with an expert elsewhere even to explain the decisions he had taken in my care. My family ended up kind of kidnapping me and checking me in to another hospital in another country to get the treatment from the guy they thought was better. It was the right thing to do.

I think you are doing the right thing by taking Helen to see the doc in Birmingham. (BTW, would you be ok with me using the names of these doctors, at least the ones we are giving positive reviews to?). He is known as on of the best in the UK, and was, if I'm not mistaken, a student of Bernard Williams who was the pioneer of syrinx surgeries and had results better than ANY other NS to date. (Unfortunately Williams died at a young age in a motorcycle accident). Williams' other students (e.g. Connor Mallucci) are also well respected. I found many NSs in the UK were open to providing second opinions and considering other's perspectives. I think it is one of your patient rights to get second opinions, though your attending doc obviously doesn't have any obligation to follow another docs opinions.

Sorry its taken me a while to reply - in the meantime I've had surgery on my syrinx by Dr Heiss at the NIH. (I'm writing from there now with a big bandage on my neck and my walker/Zimmer in front of me). Heiss is very willing to discuss other's opinions, to the point that he took my scans to a conference, showed them to his colleagues and go a bunch of input (putting a 2 week delay on my surgery but worth it). We decided, in the end, that he should just go in there and make the judgement on what to do based on what he saw. He's a thinker, and observer, and with enough self confidence that he doesn't mind taking on other's opinions. You need someone like that, and there are a number of them in the UK.
good luck,
reedy
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Re: Helen still in hospital, no improvement...

Postby emmacos » Fri Apr 27, 2012 3:43 pm

Thanks Reedy,

Im sorry to hear you're not too good either at the moment, but it sounds like you have a good NS looking after you.

Helen's having icp monitoring at the moment in hospital, and her head pain has just got worse with this - she says her head is agony when she sits up in bed, although the readings as far as I can see look normal! I just don't know what is going on here, and it's pretty worrying seeing her this way!

As soon as we are able we will take her to see Mr Flint in Birmingham, but at the moment we are sort of stuck here in Preston, as she is too unwell to be moved at the moment. I've got an awful feeling that they will say all looks good with the monitoring, and her mri looks fine so she will have to live with it! She won't be able to live with this, its not just a regular headache she's got - she's in really bad pain at the moment....

Taking it a day at a time at the moment, as that is all we can do, but I'm just praying she will start to feel well enough soon so we can bring her home and get her over to Birmingham for their opinion on what is wrong!

Emma.x
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Re: Helen still in hospital, no improvement...

Postby kiminfla » Fri Apr 27, 2012 6:34 pm

Prayers that Helen will feel better and things will improve! I feel so badly for you...to have to watch your child struggle like this...it's heartbreaking. You are a FABULOUS mom and I know you won't stop fighting for her. Big hugs...Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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