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 hello again after long abscense

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lisap

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PostSubject: hello again after long abscense   Sun May 01, 2016 2:58 am

Hello All, it has been a long time since i have been on here sorry. well things have not really changed i had a second csf repair even tho my high pressure was not treated ,i was told a lumbar puncture would be performed under anesthetic and if raised, a lumbar drain would be in place for the post operative period, to prevent the repair from failing ,when i woke no drain in place. i presumed pressure must of been normal ,i found out tho that my consultant had tried to do multiple lps under ga but was unable to successfully do this ,so went ahead and did the csf repair .it failed 3 days post op at home. i have spent 2 more years presenting at A&E my gps etc trying to get formal diagnosis asking for 2nd opinion etc finnally last year i was referred after losing it with my ENT consultant who couldn't believe i was still leaking and (surely it was in my imagination), to a new consultant neurologist who confirmed that you can have iih without papilodema  he performed one unsuccessful lp and then one under x ray, opening pressure only 28 but this with topiramate and with an active cranial csf leak so although he says my case not straight forward he believed it was iih and refereed me to a new neuro surgeon .... Hooray i thought, answers at last he felt a shunt was the only way forward and told me to expect a quick appointment to come through,10 weeks later i went for my appointment scared but excited that i was on my way to feeling better again but nope not to be. they wanted me to have more tests ,and explained they wanted me to have an icp bolt. i was so upset i understand that this has to be done but the thought of more tests is frustrating and the wait is hard. i went for my pre clerking and was treated with indifference i was told by a nurse what an icp bolt involved that it was minor procedure.    and would be performed under local and mild sedation not looking forward to having a hole drilled in my skull whilst awake but hey if it helps me get better they can do it without anything, i am that desperate to feel better.i told the dr that my gp was investigating me for low pulse and blood pressure that she thought it might be an under active thyroid he was very pre occupied during my consultation his phone ringing requesting he attend the ward etc i was with him no more than 10 minutes.so in march over the easter break i was supposed to be having the procedure. we arrived at the hospital at 7 am having left home at 3.30 am we finally saw a dr at 11 am who went through everything, he saw my observation chart my pulse was 43 nothing said the anesthetist arrived around at 12 i was due to go down at 12.30. she asked a few questions i mentioned my low pulse and bp and what the gp was doing with regards to this, she said as it was a minor procedure it was not a problem but wanted an ecg done first, this was done and next thing i know a different dr turned up and told me i couldn't have the icp bolt done the anesthetist was refusing  to do the procedure, he  told me to go to my gp and get 3 day ecg and cardiology review when this was all done they would then consider me for the icp bolt but i would have to inform them of the results and get myself put back on the waiting list/ i asked had anything been seen on the ecg and his answer i dont know i have not seen your ecg.i was told anesthetist to busy to come back and talk, we were left no one came to check on me we were just told go home even though i was sobbing .so here i am still in so much pain most days i can t function i am  on morphinr syrup that does not help my visual Fields are deteriorating . my cardio review end of june. so here i am nearly 4 years on and no further forward, On the good side  i have lost 8 stone around 112llbs in weight but this has not improved my symptoms unfortunately, and i have stopped smoking as well. so well done if you have got to the end of my post so much has gone on since my last visit. have any of you taken this long to get diagnosis and treatment is this normal in the uk or else where for that matter. i am considering seeking legal advice at this point as i feel my whole case has been managed so badly but if this the norm i have to come to terms with it so for the rant .i have got very good at them. xx
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PostSubject: Re: hello again after long abscense   Sun May 01, 2016 5:38 pm

hi Lisa I am so sorry for all of that, it does sound like no one is paying attention.  what is your TSH level?  make sure you have an endocrinologist do a work up too because adrenal problems can cause the low pulse and BP and could be related to empty sella syndrome from the IIH.  you may go through the cardio workup and they will say go see endocrine and you will be chasing your tail before you can get them to pay attention to your ICP which is probably causing the low vital signs to begin with.
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lisap

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PostSubject: Re: hello again after long abscense   Mon May 02, 2016 1:34 am

thankyou so much i didnot realise that icp can effect your vital signs i am going to research it or try t and go to my gp armed with the information any tips where i might find out more about this subject i know i will need to go armed and feady for another battle .i really am not coping with the pain at the moment the topiramate i am on doesnot seem to help much
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PostSubject: Re: hello again after long abscense   Mon May 02, 2016 1:37 am

well I'm not sure that you will find a doc who will acknowledge it, but ask them about empty sella and getting an endocrine workup for that.  because if your hormones are out of whack from it then that can definitely affect vital signs.  but they just don't seem to pay much attention to this.  it's very frustrating!
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lisap

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PostSubject: Re: hello again after long abscense   Mon May 02, 2016 1:49 am

tsh borderline low a month ago, but they are not worried about it ,why does getting help seem so hard .i saw an endocrinologist 2 years ago and was told all working well would you think i need this repeated could it of changed i just feel very unwell more han mu iih ,  i thought it was my thyroid i am so cold all the time i feel tired more than normal but have insomnia due to my head pain my nails are ridged and whilst i have lost a lot of weight, recently despite tiny portions and  low fat low carb diet my weight loss has stopped .
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PostSubject: Re: hello again after long abscense   Tue May 03, 2016 6:25 am

UARS can cause low BP, feeling cold, and insomnia.  and any type of sleep disordered breathing can theoretically increase ICP.
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PostSubject: Re: hello again after long abscense   Tue May 03, 2016 3:47 pm

Hi Lisa! I was hoping we hadn't heard from you because you were doing well..I'm so sorry that isn't the case!!! Do they still have PALS for patient advocacy in your area? If so, I would contact them for additional support. I also hope you're still seeing a counselor because that is a lot for one person to take!

I will tell you that I had the ICP bolt and it wasn't that bad. A little odd more than anything. My surgeon told me they were going to make me a unicorn and that's basically what I looked like because of the way they wrap the bolt and attached wiring. You are awake for the procedure, but they draped something over me and talked to me throughout. I didn't feel anything, but pressure and them moving my head around..the sounds are more unnerving than anything! They hook the bolt to a machine that measures your ICP while laying, sitting, and standing. They're supposed to do it for 24 hours, but my ICP was so low they took it out the following morning without any further testing. I was also at the mercy of the staff and their schedules, so I understand your frustration. And, I feel like I always leave with unanswered questions. I was also in ICU, so someone was there to monitor..it is not a good place to rest! You should be able to resume regular activities the next day, but they had me off for a week to recover from CSF loss. I hope that helps with some of your anxiety regarding that test at least.

It sounds like you're doing everything you can..congratulations on the weight loss, btw! I would look into the patient advocate option, if still available. The symptom log may also be helpful. At my worst I tracked everthing..food, drink, medication, activity, urination, bowel movements..you name it. May have been overkill, but it was enough for my neurosurgeon to see something wasn't right and order more tests. I know it's exhausting and overwhelming, but it's all worth it once they find the right treatment. Good luck, and please keep us posted!
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