Hi Joalexa,it was cancelled the night before due to an emergency that came in! so disappointed! cant stick this headache much longer.Phoned them today,could be another 4 weeks yet they said! how can you be a priority but wait another 4 weeks?! didnt know with this leak you are at risk of infection,meningitis,brain slumping and death!!!! just feel so let down.Thanks for your message
Denise x
Joalexa said:
I believe your surgery is today. Best of luck for a full and quick recovery! C.
Hi susan,thank you for that.NS said he was putting me on his urgent list in May,then I got the date for 13th June,so you keep on going till then! then the night before they phoned to say they had 2 emergencies in so my op was cancelled.Was so upset was untrue.Just kept thinking last few weeks if I can just get to the 12th June then I will be fine,symptoms have worsened,cant even move my neck and the pain at the back of my head is unbearable.Phoned the NS secretary this morn and she said because your on the urgent list you should be in withinthe next 28 days!!!!!! why should I have to wait another 4 weeks if Im suppose to be urgent? its scary to think that I have had this leak for 8 months!!!! did your symptoms worsen Susan? I cant even stand up at the moment,the dizzyness and headaches are awful,all I want to do is to lie down and sleep,were you like this before your repair?
Denise x
Susan J said:
THAT IS SOOOOO UNFAIR! Can you be on a waiting list? I'm so sorry. The waiting is almost worse than the pain (I said almost :) . I hope they contact you soon with a new date and time.
Susan J
Hi Denise! Just wanted you to know I was thinking of you. I hope you got a new surgery date by now.
JoAnne :)
Hi Joanne,how are you? Im going in this tues and op is on weds 27th June,
Denise xx
Hi Denise! I am so glad that you are getting help! Of course I will be praying for a quick and smooth recovery! The NL have Alexa on Topamax and Diamox and her headaches and nausea are gone. A huge improvement. The NS thinks the fluid will reduce by itself and advises against an operation right now. They won’t even attempt to drain it. So we are on watch and wait mode. I will be sending you happy thoughts and please relax you will be good as new after the surgery! Love JoAnne x
Denise said:
Hi Joanne,how are you? Im going in this tues and op is on weds 27th June,
Denise xx
Hi Joanne,aw thank you for your message,means alot.Im on diamox and they help alittle but still have horrrendous headaches on standing?! I think from the sounds of it my pusedo is giant and its blocking my cervico medullary junction so maybe thats why?
Love Denise xx
Joalexa said:
Hi Denise! I am so glad that you are getting help! Of course I will be praying for a quick and smooth recovery! The NL have Alexa on Topamax and Diamox and her headaches and nausea are gone. A huge improvement. The NS thinks the fluid will reduce by itself and advises against an operation right now. They won't even attempt to drain it. So we are on watch and wait mode. I will be sending you happy thoughts and please relax you will be good as new after the surgery! Love JoAnne x
Denise said:Hi Joanne,how are you? Im going in this tues and op is on weds 27th June,
Denise xx
These fluid buildups have to cause pressure and pain. Alexa’s build up was large on the MRI. There’s no question it was causing her issues. The NS said he could get rid of it via surgery but because we are only 8 weeks out all the docs want to be conservative. For what it’s worth, you’ve been suffering for months and based on everything I’ve heard from the NS they will fix it and you will be fine. She is also on Topamax which is a headache preventer so maybe that makes a difference? I am praying for peace and healing for you. Love JoAnne x
Denise said:
Hi Joanne,aw thank you for your message,means alot.Im on diamox and they help alittle but still have horrrendous headaches on standing?! I think from the sounds of it my pusedo is giant and its blocking my cervico medullary junction so maybe thats why?
Love Denise xx
Joalexa said:Hi Denise! I am so glad that you are getting help! Of course I will be praying for a quick and smooth recovery! The NL have Alexa on Topamax and Diamox and her headaches and nausea are gone. A huge improvement. The NS thinks the fluid will reduce by itself and advises against an operation right now. They won’t even attempt to drain it. So we are on watch and wait mode. I will be sending you happy thoughts and please relax you will be good as new after the surgery! Love JoAnne x
Denise said:Hi Joanne,how are you? Im going in this tues and op is on weds 27th June,
Denise xx
Just thinking about you, hows Alexa?!?? xoxo
Hi Nicole, the meds make her tired but she still wants to go, go, go. Trying hard to keep it low key but it’s not easy! She does get a headache if she runs around/swims but overall better. How’s Julia?
Nicole Casella Piotrowski said:
Just thinking about you, hows Alexa?!?? xoxo
one month today- hard to believe! Julia is in full summer mode! She really is doing great. Just says her scar get itchy but thats it. Follow up MRIs and NS appts on 8/15. She is trying to convince my husband and I to let her try out for gymnastics, I say no Dad is a softey! Im still holding my breath, not so sure everything is as good as it seems-especailly with so many reporting other issues but that is just the worried Mom in me. Please give Alexa hugs from us! talk soon, xoxoxo Nicole
Gymnastics! LOL! She must be feeling just fine and that’s wonderful. I know Alexa’s doctors are figuring out when her next MRI will be and we are hoping for much less fluid and complete healing. Julia gives me hope! Talk to you soon! JoAnne x
Nicole Casella Piotrowski said:
one month today- hard to believe! Julia is in full summer mode! She really is doing great. Just says her scar get itchy but thats it. Follow up MRIs and NS appts on 8/15. She is trying to convince my husband and I to let her try out for gymnastics, I say no Dad is a softey! Im still holding my breath, not so sure everything is as good as it seems-especailly with so many reporting other issues but that is just the worried Mom in me. Please give Alexa hugs from us! talk soon, xoxoxo Nicole
Hi Joanne,
so glad she a little better on the tabs and fingers crossed the fluid will go by itself.Please keep me informed on her progress
Denise xx
Joalexa said:
Hi Nicole, the meds make her tired but she still wants to go, go, go. Trying hard to keep it low key but it's not easy! She does get a headache if she runs around/swims but overall better. How's Julia?
Nicole Casella Piotrowski said:Just thinking about you, hows Alexa?!?? xoxo
Hi Denise! Good luck at the hospital tomorrow and surgery (finally!) on Wednesday. I will be thinking of you and praying for a smooth recovery. Keep us posted! Love JoAnne
Denise said:
Hi Joanne,so glad she a little better on the tabs and fingers crossed the fluid will go by itself.Please keep me informed on her progress
Denise xx
Joalexa said:Hi Nicole, the meds make her tired but she still wants to go, go, go. Trying hard to keep it low key but it’s not easy! She does get a headache if she runs around/swims but overall better. How’s Julia?
Nicole Casella Piotrowski said:Just thinking about you, hows Alexa?!?? xoxo
Thanks Susan and Joanne,speak to u soon,
Denise xx
Susan J said:
Denise,
You have been in my thoughts and prayers. I will be praying that everything goes great tomorrow. There is relief in site!
Susan
I’m pretty sure Denise’s surgery was today. Hopefully she’s doing great!
Susan J said:
Has anyone heard from Denise? Many prayers that everything is great and she is on the road to pain free days.
Hi Joanne and Susan,have had a nightmare!!! was all ready for theatre and the NS changed his mind and decided to try a e pidural blood patch first before doing the dura repair!!!!! can u believe it! had a spine mri which didnt show any holes but he said with all the lumbar puntures I had after the chemical meningitis there could still be a tiny hole leaking! so they went ahead and did the blood patch yesterday and said give it 6 weeks and if no better then they will do the dura repair surgery.Im so upset its untrue,why leave me 8mths and then decide the morning of the surgery to try it?????!!!! His argument was he doesnt know if its the pseudomeningcele causing the low pressure headaches or if its the spine,should of been done mths ago and not the morning of the surgery.Ive lost all faith in the NS,going to get a 2nd opinion,evenhis under study said if it is the spine then the chances of the blood patch working are slim because of the amount of time it has been left.So I now have to wait again for another 6 weeks,just one nightmare that wont end!
thank you for all youe thoughts and prayers
love Denise xx
Wow. That stinks! Unless the blood patch works? It’s time to see another NS if this doesn’t help. I am so sorry…I can’t even imagine how you’re feeling but don’t lose hope. I honestly don’t understand the reluctance to repair the dura and get this fixed once and for all. Is the pseudo getting smaller and resolving? How would a blood patch help with blocked CSF flow? I am praying somehow the blood patch works! Love JoAnne
Thanks Joanne,thats my thoughts exactly!just doesnt make any sense! the pseudo hasnt got any smaller.he said both conditions have the same symptoms so he will try this one first and then if that fails they will see about doing a revision repair.The spine mri didnt show any holes so I dont know where he is coming from?! he said the pseudo wouldnt give the valsa manuevers that im getting when i cough and laugh so it must be from a spinal leak rather than that,just all so confusing.
Love Denise x
The pressure from a large pseudo can cause all kinds of problems…it’s just common sense. Did your NS say the repair is a huge deal (not to downplay any surgery but our NS said its an easier surgery than the decompression). How are you feeling now? I would certainly seek a 2nd opinion if you have no relief.
Love JoAnne
I dont feel any different.He said it was major surgery with very high risks?! even his under study said,even if you do have a spinal leak,then 8 months on its highly unlikely that a blood patch would repair it! so what the hell is the NS on about! he is just an idiot! said i shouldnt be getting an increase in pressure when I cough or laugh from the pseudo? is this true? defo going to get a 2nd opinion,thanks Joanne xx