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Am I being too pushy?
Hi everyone!
I have Hemicrania Continua, which is a headache disorder. For the last 2 1/3 years or so it has been controlled with Indomethacin... only now I have developed a stomach ulcer do to the Indomethacin despite being on 2 stomach meds to try and protect my stomach... my kidneys also started to show signs that they were being affected as well. Because of this I had to stop taking the Indomethacin.
This ment my headaches came back full force. There are no other medications that work for it. My neuro had me try melatonin because it's chemical structure is only a bit different than the indomethacin... but it didn't work.
I did some research and found that Occipital Nerve Stimulation (ONS) is a possible treatment. I discussed this with my neuro and she thought it was worth a try but admitted she didn't know much about ONS and told be that the only other dr at the headache clinic who does them has a 4-5 month wait to get into be seen, but that she would be happy to refer me to her.
I asked her to but instead of refering me for an appt she sent me to her for an Occipital Nerve Block (ONB) she said that would be the first thing she would do to see if I was a candiate for an ONS.
On Dec 8th I had the nerve block done. When my pain was relieved with the injection of the local anesthetic the resident told me that was a good response to the nerve block and that if I responded to the steroids that were also injected it would be a bonus.
About a week and a half after the nerve block I wasn't responding to the steroids and called the office to see if I could speed up the process of seeing if I could get a ONS. The nurse called me back and said that the dr was waiting until my pain log from the two weeks after the ONB came back.
I mailed my pain log in on the 22nd of Dec. On Monday of this week I called to see if the doctor had recieved them and if she had made a decision about the ONS. I never heard back. :(
This all happened at a horrible time with the holidays and all. I'm in pain and it looks like the ONS is the only way out of it. I just need this dr to say she will do it.
Should I call in tomorrow and ask again? ... or is that being too pushy?
I'm really stressing out over this and being in pain 24/7 isn't helping and I'm sure none of this is helping my ulcer heal.
So... should I call tomorrow or wait and call Monday?
Thanks for any advice!
I have Hemicrania Continua, which is a headache disorder. For the last 2 1/3 years or so it has been controlled with Indomethacin... only now I have developed a stomach ulcer do to the Indomethacin despite being on 2 stomach meds to try and protect my stomach... my kidneys also started to show signs that they were being affected as well. Because of this I had to stop taking the Indomethacin.
This ment my headaches came back full force. There are no other medications that work for it. My neuro had me try melatonin because it's chemical structure is only a bit different than the indomethacin... but it didn't work.
I did some research and found that Occipital Nerve Stimulation (ONS) is a possible treatment. I discussed this with my neuro and she thought it was worth a try but admitted she didn't know much about ONS and told be that the only other dr at the headache clinic who does them has a 4-5 month wait to get into be seen, but that she would be happy to refer me to her.
I asked her to but instead of refering me for an appt she sent me to her for an Occipital Nerve Block (ONB) she said that would be the first thing she would do to see if I was a candiate for an ONS.
On Dec 8th I had the nerve block done. When my pain was relieved with the injection of the local anesthetic the resident told me that was a good response to the nerve block and that if I responded to the steroids that were also injected it would be a bonus.
About a week and a half after the nerve block I wasn't responding to the steroids and called the office to see if I could speed up the process of seeing if I could get a ONS. The nurse called me back and said that the dr was waiting until my pain log from the two weeks after the ONB came back.
I mailed my pain log in on the 22nd of Dec. On Monday of this week I called to see if the doctor had recieved them and if she had made a decision about the ONS. I never heard back. :(
This all happened at a horrible time with the holidays and all. I'm in pain and it looks like the ONS is the only way out of it. I just need this dr to say she will do it.
Should I call in tomorrow and ask again? ... or is that being too pushy?
I'm really stressing out over this and being in pain 24/7 isn't helping and I'm sure none of this is helping my ulcer heal.
So... should I call tomorrow or wait and call Monday?
Thanks for any advice!
I am sorry I have not responded to your updates sooner. I have pneumonia and it has zapped me.
But great news for you. Finally it sounds like you will get some needed medical attention. You are a perfect example that persaverence and persistence pays off. It seems there is a happy ending to your saga. Don't be a stranger. Please keep in touch and let us know how everything turns out for you.
Good luck on your appointment. I'm hopeful this will be the beginning of a positive and successful medical relationship. Peace to you, Tuck
But great news for you. Finally it sounds like you will get some needed medical attention. You are a perfect example that persaverence and persistence pays off. It seems there is a happy ending to your saga. Don't be a stranger. Please keep in touch and let us know how everything turns out for you.
Good luck on your appointment. I'm hopeful this will be the beginning of a positive and successful medical relationship. Peace to you, Tuck
Yesssss!!!! Finally some good news! :-)
They got me an appt with the new neuro! It's for Feb 17th... a little over a month away but thats a huge difference compared to the 4-5 months it usually takes for her. Plus... I have a good feeling about her wanting me to make an appt... this means she must be thinking about trying the ONS because otherwise I wouldn't need to see her.
They also put me on the cancellation list to get any cancellations.... however this office's cancellation list *****... because they tend not to call people when appts open up. I've been on the list 2 times before and the only way I got an cancelled appt was when I called myself to ask if there had been any cancellations. So I will be calling once a week now to try and snatch up any of her cancellations :-) Probably on Wednesday since she's only in the clinic on Thursday.
You guys have been awesome in supporting me and encouraging me to call and not give up. Thanks so much! :-)
They got me an appt with the new neuro! It's for Feb 17th... a little over a month away but thats a huge difference compared to the 4-5 months it usually takes for her. Plus... I have a good feeling about her wanting me to make an appt... this means she must be thinking about trying the ONS because otherwise I wouldn't need to see her.
They also put me on the cancellation list to get any cancellations.... however this office's cancellation list *****... because they tend not to call people when appts open up. I've been on the list 2 times before and the only way I got an cancelled appt was when I called myself to ask if there had been any cancellations. So I will be calling once a week now to try and snatch up any of her cancellations :-) Probably on Wednesday since she's only in the clinic on Thursday.
You guys have been awesome in supporting me and encouraging me to call and not give up. Thanks so much! :-)
Well here is some good news... my neuro is letting me start my Indomethacin again. They are doubling my stomach meds and I have to start slow with the Indo so my pain won't be gone all day but I should be able to have some pain free time.
I have also come to a decision on my other dr... I will wait til Thur when she is in the clinic... if I don't hear back from them that day I will call my neuro and ask for a referral to the clinic that only had the 2 week wait.
At leat I think thats what I'm going to do... lol it sounds like a good plan.
I have also come to a decision on my other dr... I will wait til Thur when she is in the clinic... if I don't hear back from them that day I will call my neuro and ask for a referral to the clinic that only had the 2 week wait.
At leat I think thats what I'm going to do... lol it sounds like a good plan.
Yikes!
The last clinic called me and they were super nice and quite helpful... but a wait for a appt with them was either 6 months to a years... but then they said it depended on who I would end up seeing and then it could be 3 months to a year on a waiting list before I could even get an appt! and appt that would be 6 months to a year out!! yikes!!!
The last clinic called me and they were super nice and quite helpful... but a wait for a appt with them was either 6 months to a years... but then they said it depended on who I would end up seeing and then it could be 3 months to a year on a waiting list before I could even get an appt! and appt that would be 6 months to a year out!! yikes!!!
ugh!!!
So I called this morning and they wouldn't let me talk to the nurse, they told me that the nurse hasn't seen the dr and today she's at the surgery center doing procedures and that they will get back to me once she talks to the dr. I hope she doesn't mean when she sees the dr again cause I know for a fact that the dr is only in the clinic on thursdays... but my pain log is at the surgery center so you would think I should hear back today.... but honestly now I'm not even thinking I'll hear back I'm just hoping and wishing.
2 of the other clinics called me today... but both want referrals from my current neuro... which is shaky because if I get a referral from her that pretty much closes the door on possibly seeing this other dr... and I really feel that overall things will happen much quicker once i'm 'officially' in with this dr.
As far as wait times the one clinic said it would be a month for a appt and the other said it would take a week for the referral papers and then about a week for an appt.
I just don't know anymore. It's scary to switch. Its just so much easier to switch drs when they are a part of the same medical system and they can easily access all of my records.
Plus... it's not like it will be only one or two appts to take care of everything... I can't be driving all over the state... I'm in school right now plus I'm an RA and my residents expect me to be around and part of my job is to be around. I sort of need the convience of my original set-up.
ugh!! I need to go and scream...
So I called this morning and they wouldn't let me talk to the nurse, they told me that the nurse hasn't seen the dr and today she's at the surgery center doing procedures and that they will get back to me once she talks to the dr. I hope she doesn't mean when she sees the dr again cause I know for a fact that the dr is only in the clinic on thursdays... but my pain log is at the surgery center so you would think I should hear back today.... but honestly now I'm not even thinking I'll hear back I'm just hoping and wishing.
2 of the other clinics called me today... but both want referrals from my current neuro... which is shaky because if I get a referral from her that pretty much closes the door on possibly seeing this other dr... and I really feel that overall things will happen much quicker once i'm 'officially' in with this dr.
As far as wait times the one clinic said it would be a month for a appt and the other said it would take a week for the referral papers and then about a week for an appt.
I just don't know anymore. It's scary to switch. Its just so much easier to switch drs when they are a part of the same medical system and they can easily access all of my records.
Plus... it's not like it will be only one or two appts to take care of everything... I can't be driving all over the state... I'm in school right now plus I'm an RA and my residents expect me to be around and part of my job is to be around. I sort of need the convience of my original set-up.
ugh!! I need to go and scream...
I am so glad you were able to find other clinics that can treat your condition. I know it sounds like a far drive but I have driven three hours for a treatment not offered in my ares. Sometimes it is just worth the extra effort.
I too would be uncomfortable with a physician and staff that did not return my calls up front. Is this an indication of how you will be treated down the road? If so is it worth investing the time and money to discover this clinic's philosophy and approach is not a good fit for you? If you have choices that is always the ideal position.
Thank you for the update. I will continue to watch for additional posts. Good luck with your new finds. Tuck
I too would be uncomfortable with a physician and staff that did not return my calls up front. Is this an indication of how you will be treated down the road? If so is it worth investing the time and money to discover this clinic's philosophy and approach is not a good fit for you? If you have choices that is always the ideal position.
Thank you for the update. I will continue to watch for additional posts. Good luck with your new finds. Tuck
Hi again!
Some good news... I've been looking around to find other clinics/drs that have exoerience with ONS and I found 3... they are a bit of a drive and it will make getting there and continuing follow-up a pain but I figured I could use them as back up if things don't work out with this current dr. It makes me feel much better to have some sort of back up even if in the end it will be more stressfull with the distance.
One is 1 1/2 hours from my school and 3 hours from my home... this one though has a program where you can email your doctors and get responses from them... I really like that.
Another it 1 1/2 hours from my home and 3 hours from my school.
The last one is 3 1/2 hours from my school and 4 1/2 hours from my home.
I have requested appts with all of them and mentioned that I was looking into ONS so I can see the dr that does that right away and I also asked how long of a wait it would be for an appt.
I figure I can always make the appts and then cancel the ones that are later.
I still am hoping for the other dr to get back to me though because it's sooo much easier! That dr is only 30min from my school and 2 hr from my home. Follow up is much eaiser then. :-)
Some good news... I've been looking around to find other clinics/drs that have exoerience with ONS and I found 3... they are a bit of a drive and it will make getting there and continuing follow-up a pain but I figured I could use them as back up if things don't work out with this current dr. It makes me feel much better to have some sort of back up even if in the end it will be more stressfull with the distance.
One is 1 1/2 hours from my school and 3 hours from my home... this one though has a program where you can email your doctors and get responses from them... I really like that.
Another it 1 1/2 hours from my home and 3 hours from my school.
The last one is 3 1/2 hours from my school and 4 1/2 hours from my home.
I have requested appts with all of them and mentioned that I was looking into ONS so I can see the dr that does that right away and I also asked how long of a wait it would be for an appt.
I figure I can always make the appts and then cancel the ones that are later.
I still am hoping for the other dr to get back to me though because it's sooo much easier! That dr is only 30min from my school and 2 hr from my home. Follow up is much eaiser then. :-)
I am so sorry you didn't get a call back. I am sure they are busy but that does not excuse them. I certainly understand why you are concerned about seeing this Physician. I hope it is not a indication of things to come.
So Monday is a new day. Call Monday morning, and call Monday afternoon...and if you get no answers call Tuesday morning, and call Tuesday afternoon. Just continue to call until you get a reply.
Hang in there and don't give up. I'll watch for your next update.
Tuck
So Monday is a new day. Call Monday morning, and call Monday afternoon...and if you get no answers call Tuesday morning, and call Tuesday afternoon. Just continue to call until you get a reply.
Hang in there and don't give up. I'll watch for your next update.
Tuck
Never called back. :-(
This *****... I'm not sure I even want to see this dr... but she's the only one who does the ONS so it's not like I have much of a choice here and because I live in the middle of nowhere my options are just really restricted.
This just has to work its self out!
This *****... I'm not sure I even want to see this dr... but she's the only one who does the ONS so it's not like I have much of a choice here and because I live in the middle of nowhere my options are just really restricted.
This just has to work its self out!
your welcome. I wish I could do more to help you. Keep being persistent and they will know you can't and won't be brushed off.
Well I called back since I never got a call back again (thanks for telling me to do that btw otherwise I probably wouldn't have)... but the nurse was unavailable so they took a message for her and hopefully I will hear back! This is all so fustrating!!
Good news. I am glad you have the ball rolling. If you do not hear back before they close call them again:)
Well I called in this morning and they put me sright back to talk to the nurse and she said she would have to make some calls and then would call me back. Because apparently my pain log went to the surgery center where my block was done and not to the clinic... but the good news is that the dr is at the surgery center today so she just has to call over there (I think).
I'll let you know when I hear back from her.
I'll let you know when I hear back from her.
Please do keep us updated and let us know how things are going. As Tuck said you have to be assertive and call everyday if need be. You need treatment and you have to stay on top of things.
good luck:)
good luck:)
Thanks!
I think I always knew that was the answer but I just needed to hear it from someone else. :-)
As far as pain meds go thats where it gets tricky for me... the only thing that works is the Indomethacin... I've been on numerous other medications even strong opiates but nothing works except the Indomethacin which is why my neuro had me try the melatonin because their chemical structures are similar.
Again thanks and I will keep you updated about hopefully tomorrow will bring good news!
I think I always knew that was the answer but I just needed to hear it from someone else. :-)
As far as pain meds go thats where it gets tricky for me... the only thing that works is the Indomethacin... I've been on numerous other medications even strong opiates but nothing works except the Indomethacin which is why my neuro had me try the melatonin because their chemical structures are similar.
Again thanks and I will keep you updated about hopefully tomorrow will bring good news!
We must be assertive and be our own advocates in our health care. This physician does not have your pain, nor does she know how you are suffering. Call tomorrow!!
I hope they have prescribed you something to ease your pain in the meantime. If they have not than a request for a pain medication would be included in my call tomorrow. We all know that the health care delivery system can move at a snails pace. I would hate to think that you must wait 4-5 months before you obtain any relief from your headaches.
Actually I think you have been patient considering your pain. Please let us know how you are doing. I will look forward to your update. Take care, Tuck
I hope they have prescribed you something to ease your pain in the meantime. If they have not than a request for a pain medication would be included in my call tomorrow. We all know that the health care delivery system can move at a snails pace. I would hate to think that you must wait 4-5 months before you obtain any relief from your headaches.
Actually I think you have been patient considering your pain. Please let us know how you are doing. I will look forward to your update. Take care, Tuck
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