Shirley, I like the idea of maybe seeing the physiatrist your sister saw at the Mayo Clinic in Jacksonville. I had never heard of that kind of doctor before.
It would be closer, covered by insurance and less invasive than surgery. If he could help.
If you could get his name for me, I will contact the Mayo Clinic next week.
Thank you so very much.
Dave
It would be closer, covered by insurance and less invasive than surgery. If he could help.
If you could get his name for me, I will contact the Mayo Clinic next week.
Thank you so very much.
Dave
I'm calling her tomorrow for her birthday.She got lots of relief from him but I don't want you to cancel your appointmebt wiht Dr. Filler because she is not fixed but got better functioning. She still has pain and has to be very careful but less pain than she did before. The doctor at Mayo Clinic knows a lot about myofacial pain and does a combination of acupunture, acupressure, trigger point and I am not sure what else. Maybe you should go for your appointment wiht Filler and then get the MRN, see what it says and then make an appointment at Mayo Clinic and then decide.
My sister has had 2 spinal surgeries in her back and neck and saw him after the surgery. So she did have surgerybut still had lots of myofacial pain. It may be that both the surgery and then seeing the doctor at Mayo Clinic both helped her.
I just don't want to be responsible for you canceling Filler's assessment when he may be able to help. And you may learn something from the MRN.
I will get the doctor's name for you.
Take care.
Shirley
My sister has had 2 spinal surgeries in her back and neck and saw him after the surgery. So she did have surgerybut still had lots of myofacial pain. It may be that both the surgery and then seeing the doctor at Mayo Clinic both helped her.
I just don't want to be responsible for you canceling Filler's assessment when he may be able to help. And you may learn something from the MRN.
I will get the doctor's name for you.
Take care.
Shirley
David, the doctor at the Mayo Clinic is Dr. Peter Dorsher and he is in the Physical Medicine and Rehabilitation Department and Pain Management Department. My sister said there is also a new neurosurgeon there who she has heard good things about. She had lots of muscle spasming and he got her to a point where she stopped having those. She also said he has a great personality and warmth toward his patients.
Hope this helps.
Shirley
Let me know if you decide to go
Hope this helps.
Shirley
Let me know if you decide to go
Hi Dave
I've been bullied by Shirley that I've not posted for a few days. Apologies folks. Shirley = thanks for that kick up the rear to check the Forum - I don't get any warning when there's a post.
Dave - reading all your postings and Shirley's replies, I would encourage you to go for the MRN. I had an MRI which only revealed that my left piriformis was atrophied and much smaller than the left side. No indication of fibrous bands or that there were anything amiss with the pelvic muscles. These problems sometimes don't show on ordinary MRIs.
I had positive and then negative results with the many marcaine and cortisone injections. Botox didn't give me any long term relief either. So after battling with this condition for 9 years AND having spinal fusion, I just decided to go for the op. MRN imaging isn't available in the UK yet and I couldn't sit for hours on a to LA.
It wasn't until the neurosurgeon opened me up that the true extent of the pathology. He found a thick fibrous band attached to the sciatic nerve at the sciatic notch. He released this, also the piriformis and pudendal nerve. I also had some problems at the sacrous tuberous ligament and supinous. (I think the piriformis attaches here too.)
Shirley's quite right by saying that you should not be put off seeing Dr Filler, at least for some sort of diagnosis. Good luck Dave.
Jo
Thank you Shirley and Jo.
I see that the MRN can also be done in Norristown, PA.
Since I've had guided injections before, I'm thinking of maybe just getting an MRN in PA.
I realize the injection by Dr. Filler is diagnostic, but I had the exact thing at the Cleveland Clinic with zero benefit.
Over the years, I find myself running around in circles repeating x-rays, mri's and injections.
The MRN would at least be something different.
Did Dr. Filler discuss the MRN with you guys while you were in LA, or was it by telephone later?
Thank you so much Shirley for getting the name of the Dr. at the Mayo Clinic.
Dave
I see that the MRN can also be done in Norristown, PA.
Since I've had guided injections before, I'm thinking of maybe just getting an MRN in PA.
I realize the injection by Dr. Filler is diagnostic, but I had the exact thing at the Cleveland Clinic with zero benefit.
Over the years, I find myself running around in circles repeating x-rays, mri's and injections.
The MRN would at least be something different.
Did Dr. Filler discuss the MRN with you guys while you were in LA, or was it by telephone later?
Thank you so much Shirley for getting the name of the Dr. at the Mayo Clinic.
Dave
Just to report that I am having a great day and just had to report this. I think the steroid dose pack works if you just let it and don't go off and prove all you can do which is what I did yesterday with bad results but today I am really good and plan to just take it easy and let the dose pack do what it needs to do.
Dave, Dr. Filler did discuss the MRN wiht me and even showed me the pictures and pointed out where there were problems. I also got a copy of the report sent to me shortly after I got home. Then he did his injections accordingly. It turned out it wasn't just my piriformis but the obturator internus was spasming lots and the surgery showed that the nerve to the obturator internus was compromised. Everything he saw on the MRN turned out to be problems in the surgery and more.
I didn't get perfect relults from his injections but I will say that my trip home was very easy and even for a short time after. He told me that the main diagnostic criteria showed up in the first few days because I think he injects marcaine (a high dose) into the areas where he sees aggravation on the nerves as well as a cortisone injection. I will say his injections worked better than any I had had before and I was able to walk steadily and at a good pace for as much as 40 minutes with some pain but nothing like without the injection. When it completely wore off I was back to square one.
I know the struggle you are having and the frustration with all you have tried and pain can be so exhausting and frustrating and debilitating but you are a fighter like all of us on this forum who don't give up and keep looking for answers. There is an MRN in Pa. and I called Dr. Filler's nurse about that but was told it would be better if I went ot Ca. and actually got the full assessment and examination by Dr. Filler.For me I think it was the right decision because I just couldn't stop thinking about it until I just went ahead. I know you will make the right decision for you and only you know. Just keep us informed because we care and are interested.
And Jo, I am glad you responded to my kick in the butt--was it that bad--anyway I got you back on and that was my intent.
Maybe I will try the same with Leesa.
Shirley
Dave, Dr. Filler did discuss the MRN wiht me and even showed me the pictures and pointed out where there were problems. I also got a copy of the report sent to me shortly after I got home. Then he did his injections accordingly. It turned out it wasn't just my piriformis but the obturator internus was spasming lots and the surgery showed that the nerve to the obturator internus was compromised. Everything he saw on the MRN turned out to be problems in the surgery and more.
I didn't get perfect relults from his injections but I will say that my trip home was very easy and even for a short time after. He told me that the main diagnostic criteria showed up in the first few days because I think he injects marcaine (a high dose) into the areas where he sees aggravation on the nerves as well as a cortisone injection. I will say his injections worked better than any I had had before and I was able to walk steadily and at a good pace for as much as 40 minutes with some pain but nothing like without the injection. When it completely wore off I was back to square one.
I know the struggle you are having and the frustration with all you have tried and pain can be so exhausting and frustrating and debilitating but you are a fighter like all of us on this forum who don't give up and keep looking for answers. There is an MRN in Pa. and I called Dr. Filler's nurse about that but was told it would be better if I went ot Ca. and actually got the full assessment and examination by Dr. Filler.For me I think it was the right decision because I just couldn't stop thinking about it until I just went ahead. I know you will make the right decision for you and only you know. Just keep us informed because we care and are interested.
And Jo, I am glad you responded to my kick in the butt--was it that bad--anyway I got you back on and that was my intent.
Maybe I will try the same with Leesa.
Shirley
Shirley, I think you should..LoL get Leesa to update on her. We all still need her and to hear about her successes.
I am so happy to hear you are having a good day. :D :squint:
Jo, not sure if you go my pm, but I am glad you posted again. Great to hear from you. We are still trying.
I am so happy to hear you are having a good day. :D :squint:
Jo, not sure if you go my pm, but I am glad you posted again. Great to hear from you. We are still trying.
Hi everybody. I m VERY happy to report I m still doing really, really well. I m back working (a lot), walking when I can and have very little leg pain. And I mean very little. Most of the time I have no leg pain at all. No butt pain to speak of for a long time now. The only real complaint is my tailbone which hurts when I sit too long which was never a problem before so I have no idea what that s about. I m hoping to be able to up my exercise soon. Not sure if running will be part of that but I d sure like it to be.
For those of you who are new here I had PS surgery with Dr. Filler on January 29 then had back surgery, also with Dr. Filler, on August 28 for a herniated disc. I have a pretty detailed log of how I did right after PS surgery on the forum after Jan 29th. Then developed the disc problem which I can only assume happened after PS surgery since there was no significant disc bulge on any of the MRI s or MRN while testing for PS problems. But who knows?
Dave- we SO understand your struggles with pain, doctors, medication, frustration, anger etc, etc. It s exhausting. This is a great place for info and support. I agree that the MRN would be a good idea. I believe it s a great test to show what s going on in there. Keep searching because although my pain journey was only 2 years I didn t think I d EVER feel good again and now I do. I know others have suffered far longer than that which is why I say only 2 years . I didn t have much relief from the injection either. This has already been addressed but as far as the MRN, Dr. Filler showed me mine too and explained it in detail and it was good to see it for myself. I hope you find some answers soon.
Shirley settle down over there!! Glad you had an easy day and feel better today.
Menzie Thanks for asking about me .Shirley have me a hint to check the forum!! I ve just been busy with work and haven t checked in much. I continue to pull for you and your D. You re both strong women and an inspiration to everyone who s struggling to keep trying to find answers.
Jo I hope you continue to recover with better and better days ahead. How s it going? I used to get emails when people posted but don t anymore either .hmmmm?
Nick I didn t have much luck with Lyrica for PS pain either. I hope the series of injections help you.
Hang tough everyone.
Leesa
For those of you who are new here I had PS surgery with Dr. Filler on January 29 then had back surgery, also with Dr. Filler, on August 28 for a herniated disc. I have a pretty detailed log of how I did right after PS surgery on the forum after Jan 29th. Then developed the disc problem which I can only assume happened after PS surgery since there was no significant disc bulge on any of the MRI s or MRN while testing for PS problems. But who knows?
Dave- we SO understand your struggles with pain, doctors, medication, frustration, anger etc, etc. It s exhausting. This is a great place for info and support. I agree that the MRN would be a good idea. I believe it s a great test to show what s going on in there. Keep searching because although my pain journey was only 2 years I didn t think I d EVER feel good again and now I do. I know others have suffered far longer than that which is why I say only 2 years . I didn t have much relief from the injection either. This has already been addressed but as far as the MRN, Dr. Filler showed me mine too and explained it in detail and it was good to see it for myself. I hope you find some answers soon.
Shirley settle down over there!! Glad you had an easy day and feel better today.
Menzie Thanks for asking about me .Shirley have me a hint to check the forum!! I ve just been busy with work and haven t checked in much. I continue to pull for you and your D. You re both strong women and an inspiration to everyone who s struggling to keep trying to find answers.
Jo I hope you continue to recover with better and better days ahead. How s it going? I used to get emails when people posted but don t anymore either .hmmmm?
Nick I didn t have much luck with Lyrica for PS pain either. I hope the series of injections help you.
Hang tough everyone.
Leesa
Always great to get updates from everyone. I just wanted to share the news. The pain was so bad this weekend it just pushed me over the edge. I just scheduled my surgery with Dr. Filler. December 4.
Nick:
I know it's not an easy decision to make. I wish you all the best. Have you had any surgeries before? I hadn't and was pretty scared but just remember, you will be "out" before you know it and then you'll wake up hopefully be on your way to some relief. Just remember, it could take some time to start feeling better after so patience, patience, patience and take it REAL easy.!
Leesa
I know it's not an easy decision to make. I wish you all the best. Have you had any surgeries before? I hadn't and was pretty scared but just remember, you will be "out" before you know it and then you'll wake up hopefully be on your way to some relief. Just remember, it could take some time to start feeling better after so patience, patience, patience and take it REAL easy.!
Leesa
Great, great news Nick. I know this has taken a long time to make your decision just like it did for me. There was some relief when I finally made the decision and got on with my plans so I hope that is true for you.
Menzie and I just posted the places we stayed so hopefully that will be helpful. I think Days Inn is somewhat less expensive than the Best Western where I stayed but the B.W. was right across the street from the hospital where I had my surgery done, at St. John's. I had it done there because I was a fee paying patient but if your insurance covers your hospital cost I recommend Cedars Sinai as St. John's has taken on all the patients from a hospital that just closed and is understaffed. Cedars Sinai is outrageously expensive if you have to pay yourself as I did.
Promise to stay on and keep us all up to date. I will sure be on here for awhile because as Leesa says it takes time for the nerves and the piriformis to settle down after surgery. Mine seems to be one that will be a long recovery but I just have to be patient .
Menzie, think of you lots and keep hoping there will be an answer for you and your D. Hoe is she doing psychologically? How about you?
Jo, glad you are back on too and sometimes you stop getting messages about new posts if you haven't posted for awhile.
And Leesa, great to hear from someone who is doing so well. It cheers all of us up. And to think, you have had 2 Filler surgeries and are doing so well.
Today not as good as yesterday. I had to go out and get a flu shot and then go to the dentist. I should have cancelled the dentist and waited but oh well. Patience, patience.
Shirley
Menzie and I just posted the places we stayed so hopefully that will be helpful. I think Days Inn is somewhat less expensive than the Best Western where I stayed but the B.W. was right across the street from the hospital where I had my surgery done, at St. John's. I had it done there because I was a fee paying patient but if your insurance covers your hospital cost I recommend Cedars Sinai as St. John's has taken on all the patients from a hospital that just closed and is understaffed. Cedars Sinai is outrageously expensive if you have to pay yourself as I did.
Promise to stay on and keep us all up to date. I will sure be on here for awhile because as Leesa says it takes time for the nerves and the piriformis to settle down after surgery. Mine seems to be one that will be a long recovery but I just have to be patient .
Menzie, think of you lots and keep hoping there will be an answer for you and your D. Hoe is she doing psychologically? How about you?
Jo, glad you are back on too and sometimes you stop getting messages about new posts if you haven't posted for awhile.
And Leesa, great to hear from someone who is doing so well. It cheers all of us up. And to think, you have had 2 Filler surgeries and are doing so well.
Today not as good as yesterday. I had to go out and get a flu shot and then go to the dentist. I should have cancelled the dentist and waited but oh well. Patience, patience.
Shirley
Hi Leesa. Yes, I've had surgery before -- I had a sinus blockage and deviated septum that had to be operated on back in 2000, and although the post-op was no fun, the recovery was pretty quick, a week or so. The procedure itself doesn't worry me. It's the possible side effects and the recovery time that has me worried. Yet at the same time, I can't really function like this, and after 18 months of constant pain, I finally feel like there is something to look forward to, something that could potentially get me my life back. And yes, Shirley, as soon as I made the appointment, I kind of felt a sense of relief. And I want to thank everyone on here for helping me make this decision. :)
Hi everyone
Thought I'd better take a rain check on the Forum as I don't get an email if there's been any movement and.....WOW - you've been very busy with updates
Nick: GREAT news about your op on 4 Dec. Go for it, I am really sure you won't be disappointed - you've made that decision and must be so relieved. Just take some syrup of figs or organic prunes with you to the clinic - that's a tip from David and it works. Shirley, Leesa and I and many others will know that you'll be counting the days. Keep us up to date!
Leesa: You've doing just great. It's so uplifting to hear that you're back to working and obviously enjoying life much more - let me know when I can join you for that run! You've done really well especially after two lots of surgery. Whenever you can, post a few lines, just to encourage those of us who are planning on the next hill climb, or snowboarding holiday! If you do disappear, it'll simply mean life is far too enjoyable to be in front of the laptop. Don't worry though, cos Shirley and I will be catching up soon!
Menzie: I didn't quite catch what you meant by pm in your message to me? Does that mean you're still trying to find out about possible treatment for that epidural fibrosis for your d? I continue to take high doses of Vitamin E and the Trental - added to cross frictioning my 5" scar twice a day with liquid Vitamin E, I think I must be well oiled! Have you made any headway with contacts at Iowa Uni? You are a rock Menzie, and we all know you'll never give up because new things come along every day including hope and progress.
Shirley: Well, at last you've had a really good day. What a relief. Don't you feel as though you've been reborn? I almost skipped down the stairs yesterday and felt as light as a feather. Did miss your email with my coffee though but then it was ok when I got onto the Forum to see your post there. Thanks! The steroid pack seems to be helping you greatly. Delighted for you. Just don't go charging around the department stores.
My physio is due again tomorrow - I don't think I need this help anymore. Got a call from my Consultant's secretary yesterday confirming that I should just be taking things easy and no particular physio. Walking yes, but as next week my 6 weeks will be up and I hope to make it to a pool. I will let you know if I make it and how the walking in the water goes. It's just not very inviting as its turned cold and damp and the thought of getting my kit off and getting into a pool that's not exactly the temperature of minestrone isn't that appealing. Well, I suppose I'll have to succumb if it leads me along the path to being able to do more without pain. Have greatly decreased the paracetamol by the way. Maybe a couple or 4 max a day.
Dave: I think you should take Shirley's advice. I wasn't lucky enough to have an MRN here in the UK. No such device or maybe more to the point, not the implementation yet although the technology is there. Perhaps another problem is training staff who are capable to reading these images. I had all my treatment under the National Health Service which didn't cost me a penny. I can tell you though that after years and years of suffering, I was almost at the point of selling my house just to get on a plane over to the US for treatment, even if I had to travel 1st class. But I would then be homeless! Go for it Dave, please don't suffer any more if there's a chance of getting a firm diagnosis. Once you have this, you can decide what's best for you.
I hope I've not forgotten anyone on this posting. Off to clear some leaves outside before it gets too dark. :D :D :D
Jo
Thought I'd better take a rain check on the Forum as I don't get an email if there's been any movement and.....WOW - you've been very busy with updates
Nick: GREAT news about your op on 4 Dec. Go for it, I am really sure you won't be disappointed - you've made that decision and must be so relieved. Just take some syrup of figs or organic prunes with you to the clinic - that's a tip from David and it works. Shirley, Leesa and I and many others will know that you'll be counting the days. Keep us up to date!
Leesa: You've doing just great. It's so uplifting to hear that you're back to working and obviously enjoying life much more - let me know when I can join you for that run! You've done really well especially after two lots of surgery. Whenever you can, post a few lines, just to encourage those of us who are planning on the next hill climb, or snowboarding holiday! If you do disappear, it'll simply mean life is far too enjoyable to be in front of the laptop. Don't worry though, cos Shirley and I will be catching up soon!
Menzie: I didn't quite catch what you meant by pm in your message to me? Does that mean you're still trying to find out about possible treatment for that epidural fibrosis for your d? I continue to take high doses of Vitamin E and the Trental - added to cross frictioning my 5" scar twice a day with liquid Vitamin E, I think I must be well oiled! Have you made any headway with contacts at Iowa Uni? You are a rock Menzie, and we all know you'll never give up because new things come along every day including hope and progress.
Shirley: Well, at last you've had a really good day. What a relief. Don't you feel as though you've been reborn? I almost skipped down the stairs yesterday and felt as light as a feather. Did miss your email with my coffee though but then it was ok when I got onto the Forum to see your post there. Thanks! The steroid pack seems to be helping you greatly. Delighted for you. Just don't go charging around the department stores.
My physio is due again tomorrow - I don't think I need this help anymore. Got a call from my Consultant's secretary yesterday confirming that I should just be taking things easy and no particular physio. Walking yes, but as next week my 6 weeks will be up and I hope to make it to a pool. I will let you know if I make it and how the walking in the water goes. It's just not very inviting as its turned cold and damp and the thought of getting my kit off and getting into a pool that's not exactly the temperature of minestrone isn't that appealing. Well, I suppose I'll have to succumb if it leads me along the path to being able to do more without pain. Have greatly decreased the paracetamol by the way. Maybe a couple or 4 max a day.
Dave: I think you should take Shirley's advice. I wasn't lucky enough to have an MRN here in the UK. No such device or maybe more to the point, not the implementation yet although the technology is there. Perhaps another problem is training staff who are capable to reading these images. I had all my treatment under the National Health Service which didn't cost me a penny. I can tell you though that after years and years of suffering, I was almost at the point of selling my house just to get on a plane over to the US for treatment, even if I had to travel 1st class. But I would then be homeless! Go for it Dave, please don't suffer any more if there's a chance of getting a firm diagnosis. Once you have this, you can decide what's best for you.
I hope I've not forgotten anyone on this posting. Off to clear some leaves outside before it gets too dark. :D :D :D
Jo
Thank you all for the good, sound advice.
After much agonizing and discussing the pros and cons of everything with my wife, I cancelled my appointment with Dr. Filler.
I have an appointment with Dr. Dorscher, at the Jacksonville Mayo Clinic, in late January.
Another option I was considering was to get the MRN in PA, which would have been much easier than LA. The cost was $4020 for the MRN. I haven't met any of my $3000 insurance deductable yet this year. If I'm going to start throwing money at this thing, it makes sense to wait until after the first of the year so I'm not paying my deductable twice.
I have a new found appreciation for everyone here who has proceeded with the surgery. It is a monumental emotional and financial commitment.
It is encouraging to see the positive posts of those who are post-surgery.
Shirley, thank you so much for your advice. I think I would have cancelled with Dr. Filler regardless of Dr. Dorscher. I know by now that one more doctor visit isn't going to cure my pain. It will likely require surgery. But, I'll find out what they are doing about this problem at the Mayo Clinic and will post what I learn. Dr. Filler will still be there next year.
Dave
After much agonizing and discussing the pros and cons of everything with my wife, I cancelled my appointment with Dr. Filler.
I have an appointment with Dr. Dorscher, at the Jacksonville Mayo Clinic, in late January.
Another option I was considering was to get the MRN in PA, which would have been much easier than LA. The cost was $4020 for the MRN. I haven't met any of my $3000 insurance deductable yet this year. If I'm going to start throwing money at this thing, it makes sense to wait until after the first of the year so I'm not paying my deductable twice.
I have a new found appreciation for everyone here who has proceeded with the surgery. It is a monumental emotional and financial commitment.
It is encouraging to see the positive posts of those who are post-surgery.
Shirley, thank you so much for your advice. I think I would have cancelled with Dr. Filler regardless of Dr. Dorscher. I know by now that one more doctor visit isn't going to cure my pain. It will likely require surgery. But, I'll find out what they are doing about this problem at the Mayo Clinic and will post what I learn. Dr. Filler will still be there next year.
Dave
Dave,glad you have taken another step to get help and I really hope my advice turns out to be good. As I told you, whatever you decided would be the right decision for you. I will really be interested to hear how things work out wit Dr. Dorsher. My sister was very pleased with him. Tell him that Virginia Creveling's sister told you about him because she kept him appraised about me. She saw him lots so I am sure he will remember her. She stopped seeing him only because she moved from Jacksonville down to Boynton Beach where her son lives about 9 months ago. Her husband is a retired neurologist.
There has been some research saying that they use MRN at the Mayo Clinic in Rochester. If you go into Wikipedia andlook up MR Neurography, you will see that the Mayo Clinic says they have done some research using MRN. I think people have studied how Dr. Filler has developed MRN and have adapted MRI to scan accordingly. It may not be exactly the same as Filler because he claims to have a patent so I am not sure.
Happy that I was able to give you an alternative and I hope you are pleased with him. It may turn oout there is a neurosurgeon there who can assess you wiht regard to surgery. Promise to keep us informed. Thanks for letting us all know.
Shirley
There has been some research saying that they use MRN at the Mayo Clinic in Rochester. If you go into Wikipedia andlook up MR Neurography, you will see that the Mayo Clinic says they have done some research using MRN. I think people have studied how Dr. Filler has developed MRN and have adapted MRI to scan accordingly. It may not be exactly the same as Filler because he claims to have a patent so I am not sure.
Happy that I was able to give you an alternative and I hope you are pleased with him. It may turn oout there is a neurosurgeon there who can assess you wiht regard to surgery. Promise to keep us informed. Thanks for letting us all know.
Shirley