Me again.
 

Hi I have decided to contact a private sergeon about having an operation. They say its 90+% cure??? I'm scared as my health not fab And my disabilitys neumerous. will keep you informed. xxxxxx

what type of surgery are you looking into????? MVD ,Gamma??? neither of those are 90 % successful :( I hear equal good and bad on both of those but maybe you are looking into something different??
please please get all the info you can about it before you have it done.I have you in my prayers and positive thoughts for everything to work out and for you to find a way to control this T.N.monster.
I have a SCS for my pain and it has saved my life , given me my life back . it is a last option .I hope you find control before reaching that point!
:hug:
have you in my positive healing thoughts and my prayers also.
Keep us informed and if we can help feel free to post or send message (click on name and can send private messages to anyone here.)
Low pain to you :hug:
PEACE
BMW

Hi BMW, I have to be very carefull with all I have going on health wise hun. I will give you all the info I can as soon as I get it ok. Have istablished am not able to take Tegratol or Lyrica as affect my breathing and fluid retention. I cant put up with the pain any longer as painkillers don't help at all. :( I cant tell my husband but I'm really getting to a bad place. Don't want to give in though. Hope your ok. :hug::hug: Jackie. xxxxxx

oh sweetie I am so sorry the meds you have been on are not doing much to help :(
I know about that bad place... you get angry at your body for being like it is for the meds not helping, for no one around you who can really understand what this is like..... but please please reach out.. do not give up you should tell your doc how you are feeling...it usually speeds things up when they know your near or are in the bad place.I couldnt take it anymore had a few plans but i told doc and things changed for the better and it was fast too. I am here if you want to talk ..I will message you my email..
I have you in my prayers and send lots and lots of positive healing low pain energy to you.
Hold on things will turn around soon. we are here if you want to vent in fact I bet others would join in venting .
I will start right now with a ear bursting scream AHHHHHHHHHHHH I hate T.N and this pain monster. I hate the way it controls my life my days my meals , kissing, chewing, controls and imprisons ..ugh I hate you t.n. monster.
Keeping you in my prayers ...Dont give up.the bravest thing to do is reach out for help when we need it.. it is also the hardest thing to do ..but it is the only thing to do..so reach my friend reach call doc write hub a letter..let it out sweetie. and hold on! we are here for you!!! and check you box I am gonna send email address to ya.
:hug:
:grouphug:
:hug:
PEACE
BMW

Thank you so much hun it helps. so much your a good sperit. xxxxx:hug::grouphug::hug:

I'm a bit fed up! My TN kicked off bad again :eek: I have just had a hour long session of really bad belts :eek: cant bite so eating is hard again. Still no ferther forward with getting referal for op. Flipping Docters :mad: Sorry rant over:p Hope your all ok. Love Jackie.xxxxxxxxx :grouphug::hug::grouphug::hug:

Good luck Supermoo!! X

Thanks hun. How are you doing ? xxxxxxxxxxx:grouphug:

ME!! i'm not bad you know, :rolleyes:

I'm off to see the neurosurgeons down at the QMC in Nottingham for a chat about having the lumbar peritoneal shunt installed to sort out my Intracranial Hypertension tomorrow afternoon, so a little stressed about that, but what will be will be you know if it make it all better then it's the way to go!!:o

You take care and get better yourself Supermoo xx
:hug:

Good luck hun hope all goes the very best it can for you. xxxxxxxx:grouphug::hug::grouphug::hug:

The appointment went well Supermoo,

He's got to look at my MRI's first becuase he was unable to get them up on the screen :rolleyes: but I may be able have 2 options now rather than 1

my neuro advised the lumbar shunt but the neurosurgeon who does them week in week out said i could (if my ventricle is thick enough after looking at my MRI) be able to have the ventricular shunt which he seemed to "big up" to me, he told me the risks of them both and has left me to think about it and he's going to look at the scans and write to me then i'll go back and we'll reach some decision which we are going for and then it will be done.

I am not nervous about it as it will make life better, has when you've lived 2 years with something that is going to be made better you want it over with xx

xxx

Thanks for thinking of me MOO XXXX:hug::grouphug::hug:

I'm glad things are looking good hun :) If ya need a chat pm me will give you e.mail addy ok. Big ((((((((((huggs))))))))))))))) xxxxxxxxx

had VP shunt placed
 

Hi Donna,
*edit* I saw your post and wanted to let you know that my NS and I went down this same path, as they discovered IH in me after my MVD. I eventually had a VP shunt put in. Unfortunately, relieving the the pressure in my head had no effect on my trigeminal pain. I am so grateful that he gave it a try. Be careful in making your decision on getting a shunt, they are tricky and fallible.
The last thing that I want to do is rain on anyone's parade, though,*edit*
I am not implying in any way that you will have the same experience as me though! God forbid. Just...well...buyer beware...

*edit*

Best wishes,
Lily :)

Hiya Lily

Yeah thanks for your input on that, it's nice to know what people are thinking xx

No decision has been reached yet so i will think long and hard about which one i have, did you have the shunt removed then?!

Good question...no - it's permanent, since the IH was consistently there. I have had very few problems with mine. You might try a hydrocephalus forum, to get the input of others with shunts. There are folks that have gotten them as children, but also who have gotten them as adults. I received much good advice before I got mine.

Best of luck,

Lily

Thanks Lily xxx