I'm having huge problems with the health service here in the UK.
My MVD has been postponed THREE times in the past four weeks - the last time was yesterday when it was cancelled as there was no HDU bed available for me post surgery.
Am so frustrated at having worked myself up three times now, only to be let down. It was a huge decision for me to make to have the MVD...now the more I think about it, the more nervous I'm getting.
New date is now next Tuesday 17th - but who knows if it will go ahead. :-(
Hopefully it will go through.I know nothing about UK health care.I hope Obamacare isn't pushing us there.Try to keep your stress level down.Good Luck from Texas!
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
Hang in there; it will all be worth the wait once you are done with the procedure. When I have been faced with medical procedures it has always turned out much easier and with a better outcome than I had worried and imagined it would going into it. I had mvd in July and I am so thankful for the outcome. As I have said before on this site, my outcome was very successful and the recovery really wasn't that bad: much more tolerable than the pain of TN!! Be patient and just know that your doing the right thing and maybe there is an eternal reason for the delays that you don't even know about!
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
Dove said: Replying to RQTPIE: Your own family not understanding is the last thing you need. Hasn't your husband seen the symptoms of TN, ATN and atypical facial pain (pain of unknown aetiology) on the web. If he has he is very unjust.
I recently read how surgery has become more common and good results too. Best wishes, Dove
RQTPIE said:
I totally understand your frustration.
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
I am SO sorry for the problems you are having with your health service in the UK. I understand from other postings on the web that similar situations occur in Canada. One woman was on a 6 to 8 month wait list for an MVD, while others in both England and Canada have been told their existing meds are no longer available.
Here in the US I emailed the Mayo Clinic and was able to get an appt to visit within 2 weeks. They came up with an alternative med protocol that is working well, but told me that if I need surgery to call back directly to the neurosurgeon I saw (rather than thru the clinic scheduler) and he could work me in within 3 to 4 business days in an emergency, including for surgery.
I have good private insurance and can afford to keep it and it includes the Mayo Clinic. But under the new ACA (also known as Obamacare) the network of covered doctors and hospitals is very limited - it specifically excludes the Mayo Clinic, Cleveland Clinic, Cedars-Sinai, Sloan-Kettering, and many of the other best nationally known hospitals. Who knows what ultimate bad effects Obamacare will cause on the US healthcare system. It is very scary.
I was referred for surgery in March and was given a date in November, and I didn't really mind the wait so much as my pain meds are working really well - although I am TOTALLY zonked out all the time. I was so set to have the surgery on Nov 5, this was then postponed as the surgeon was on vacation until Nov 19, then on the 19 one of the anesthetists was called to another surgery, and then the surgery that was rescheduled for yesterday was cancelled due to no bed being available in the HDU. The last two times I have been in the hospital, had seen the surgeon and was waiting to be called down. Not good for the nerves.
Oh wow. My husband has had a hard time understanding some of my health issues. Eventually, he did get it and now feels like a dork for being so ignorant. Unfortunately, pain can't be understood by those who do not know pain to this level. I often refer to my attacks as seizures on the brain. Because my trigeminal actually hits me on top of the brain. Mine is not so much in my face. Some eyeball. I would think the stress of people around you not supporting you, make it even more difficult and stress is really hard on us. Find a support group. Somehow, you have to find personal support. Any illness, disease, syndrome.....is hard to fight alone.
wishing you well
Dove said:
Dove said: Replying to RQTPIE: Your own family not understanding is the last thing you need. Hasn't your husband seen the symptoms of TN, ATN and atypical facial pain (pain of unknown aetiology) on the web. If he has he is very unjust.
I recently read how surgery has become more common and good results too. Best wishes, Dove
RQTPIE said:
I totally understand your frustration.
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
I think this is the worst part for me. My family not understanding. I know it is hard to understand when they have not been through the pain. One day I am fine and the next I can't even talk the pain is so bad. They just kind of ignore it and never ask about it. I have so many days where I would do anything for the pain to stop. The doctors don't even understand. They can't fix it so they just want to keep giving you medication that makes you want to sleep and not able to function. I am still working full time but I am going to have to quit. I can't function between the medicine and the pain. I am on anti seizure medication but he won't give me pain pills. I told him it has been so bad I have wanted to go to the emergency room but didn't think I could make it there. He told me it would just be a waste of everybodys time if I went to the emergency room. All they would do is give me something for pain and send me home. REALLY?? That is what I need. I have never been a baby about pain but this is a pain I can't even describe. You just want to die.
RQTPIE said:
I totally understand your frustration.
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
RQTPIE: I feel sooo sorry for your situation. Perhaps your husband my want to take some time and just goggle TN face pain. It is enlightening sometimes for people like that. Just to think that Wiki states it the worst pain in human existence is enough. It is funny how some that are closest to us are the fastest to judge us. My husband is the most kind person I have ever met but my family is just ridiculous in saying much of what I have read in your message. This will be a long process for you trying to educate people. Hopefully you may find enough support from people like us to help you get through this.
-Ann
Cindy said:
Oh wow. My husband has had a hard time understanding some of my health issues. Eventually, he did get it and now feels like a dork for being so ignorant. Unfortunately, pain can't be understood by those who do not know pain to this level. I often refer to my attacks as seizures on the brain. Because my trigeminal actually hits me on top of the brain. Mine is not so much in my face. Some eyeball. I would think the stress of people around you not supporting you, make it even more difficult and stress is really hard on us. Find a support group. Somehow, you have to find personal support. Any illness, disease, syndrome.....is hard to fight alone.
wishing you well
Dove said:
Dove said: Replying to RQTPIE: Your own family not understanding is the last thing you need. Hasn't your husband seen the symptoms of TN, ATN and atypical facial pain (pain of unknown aetiology) on the web. If he has he is very unjust.
I recently read how surgery has become more common and good results too. Best wishes, Dove
RQTPIE said:
I totally understand your frustration.
Luckily for me, my healthcare has been nothing but a miracle. It's everything else for me. I have my surgery scheduled this Wed., Dec. 18th - MVD also. I wish you all the best.
For me, it has been the family not understanding. My husband and I fight regularly because he can't understand my pain. He gets mad at me when I miss work. He and I fight all the time about money because I have a hard time getting to work when I am in serious pain. He doesn't get it. My boys are little, still. I have a 7 year old, 9 year old, and a 12 year old. They don't get it. I hate that they have to see me like that. My husband has convinced them that I am lazy. He has also convinced them and others that I need to be put into a mental facility because I am so depressed.
I am hoping that things will be somewhat better when I have the surgery, but I am not sure.
Grace and RQTPIE: Please do not stress over the MVD surgery. Let your surgeon do the worrying. I had mine two years ago after 8 years of awful TN pain and it give me my life back.. No more pain, no more meds since.
My only issue was post surgery anxiety due to too rapid Lyrica withdrawal so take care not to drop your existing medication dosages too quickly. You brain needs to get back to its 'normal' chemistry slowly.
Hi, I can understand your frustration, my MVD operation was cancelled four times due to them having no intensive care beds. You must keep fighting and don't give up, its well worth the wait to be pain free. Wishing you well xxxx
Just a note to those scared of the ACA or "Obamacare" in the US:
I am honestly grateful that many of you have been blessed with good insurance & the ability to take care of your needs with this disease. It's a horrible burden. Contrast that fact with those of us who have been declined insurance b/c of the disease and have limited or no access to needed care b/c the insurance industry will not help. Add that to the inability to sustain regular employment & therefore, the inability to gain insurance in that way. Please don't misunderstand: I'm NOT trying to argue the ACA one way or the other; just that there are effects on both sides. It shouldn't be an "all or nothing" case. I want to see help for ALL of us :)
VAgirl said:
Dear Grace:
I am SO sorry for the problems you are having with your health service in the UK. I understand from other postings on the web that similar situations occur in Canada. One woman was on a 6 to 8 month wait list for an MVD, while others in both England and Canada have been told their existing meds are no longer available.
Here in the US I emailed the Mayo Clinic and was able to get an appt to visit within 2 weeks. They came up with an alternative med protocol that is working well, but told me that if I need surgery to call back directly to the neurosurgeon I saw (rather than thru the clinic scheduler) and he could work me in within 3 to 4 business days in an emergency, including for surgery.
I have good private insurance and can afford to keep it and it includes the Mayo Clinic. But under the new ACA (also known as Obamacare) the network of covered doctors and hospitals is very limited - it specifically excludes the Mayo Clinic, Cleveland Clinic, Cedars-Sinai, Sloan-Kettering, and many of the other best nationally known hospitals. Who knows what ultimate bad effects Obamacare will cause on the US healthcare system. It is very scary.
RQTPIE: I believe there is an article on this site for families/loved ones of those with TN. Perhaps it could help your husband understand a bit more. That has to be incredibly tough. I'm very sorry.
Hi grace, hang in there, it will all be worth it… It will be the best decision you have ever made… You’ll be feeling miles better by Christmas… Fingers crossed for next week. I’ll be thinking of you, look forward to hearing all about it soon. Love anne
A bit worried that I'll be poorly over Christmas - but we are visiting family I'm sure I will be well looked after.
anne morris said:
Hi grace, hang in there, it will all be worth it.... It will be the best decision you have ever made.... You'll be feeling miles better by Christmas.. Fingers crossed for next week. I'll be thinking of you, look forward to hearing all about it soon. Love anne
Four times? That's horrendous Mark. I just need to get it done, I've had TN for almost 5 years now and I'm getting fed up with having to take my medication. Can't wait to feel normal again.
mark said:
Hi, I can understand your frustration, my MVD operation was cancelled four times due to them having no intensive care beds. You must keep fighting and don't give up, its well worth the wait to be pain free. Wishing you well xxxx