Omigod i cant believe it. I phoned the waiting list department again today and guess what the doctor due
to due the lp's has resigned and they have no one available to do them.

I am so upset - had a really bad 2 days extreme pain and heart palpitations (is that normal), I phoned the
complaints department and am now waiting for a answer.

Is there any other method that I can use to get somewhere with this hospital and its lack of care.

Any help would be appreciated.

Bonnie

Bonnie, I'm so sorry! I guess assistance depends on where you live..is the "complaint department" associated w/ PALS? I don't know much outside of the USA, but let us know where you live and I'm sure you'll get more specific advice. You can always go to ER, if the pain's too much to bare. I'm guessing the heart palpitations are from the anxiety and stress of the pain, but you should get it checked out. Do you have a neuro-ophthalmologist, neurologist, or PCP/GP that would advocate for you? That's all I can think of right now. Hang in there and let us know how you're progressing.


Julie

Bonnie I would get in touch with your hospitals PALSjust like Julie suggested. They are there to help you and to also respond to complaints and mediate for you. I would ring them and explain your situation and how you feel, and that you are not happy with the way your treatment it being handled. You can inform them that you wish to make a formal complaint if you wish as well.

I find it very hard to believe that in an entire hospital, only one doctor knows how to do a Lumbar Puncture! As an NHS patients you have rights and they have a duty of care, which they are not fulfilling. Ring PALS and please let us know how you get on. Good Luck!

hi Bonnie;
I get palpitations too. I don't have a good explanation for it. it always seems like the palpitations follow a bad night with my sleep apnea, which also makes my IIH worse. they have shown at Stanford that during the struggle to breathe at night during sleep disordered breathing, the abnormal pressures in the chest can actually cause the heart to collapse on itself (briefly I imagine). so even though my heart checks out normal, I suspect perhaps it's the sleep apnea that causes the palpitations. the hypoventilation raises intracranial pressure and makes IIH worse too. but lately I am wondering if there is something else going on, like pressure on the heart centers in the brainstem.

I'm so sorry about your troubles. I would think your neurologist should be able to do the LP; I'd call his office to ask what they want you to do. if you feel awful you can go to the ER; the ER doc should also be able to do it. but only the interventional radiologists can do it under fluoroscopy, so it's just not as finessed without that.

Deb

I know its mad hey that only 1 doctor in a huge hospital in Essex that performs lp's its ridiculous. I will phone PALS. I googled it and will phone them in the morning - thanks for that.
Thanks for the support have had a very emotional day but will solider on.

Bonnie