Menzie
I'm so glad I read some of your messages. You may remember that I posted the results of my MRI from over a year ago. After having spinal fusion, then the metalwork removed a year down the line I have been battling with the devastating condition that I have been left in like your D.
I, like you, have done and tried just about everything but what I've left with in a nutshell is a definite piriformis syndrome (probably always there even when I went for fusion) and following the fusion, SCARRING AROUND THE S1 NERVES. This is commonly known as EPIDURAL FIBROSIS for which until now there has been no known cure.
I will send you links in a private email Menzie about a trial which I'm on and the various publications about this including Reuters, New York. Successful treatment has been carried out and in the final stages of trials in Paris. Treatment consists of a combination of Tocopherol (Vitamin E) and Torental (a vasodilator). Sometimes Clastoban is added which acts as a booster. I went to Paris in January and am on the trial. I have been much better, but the fact that my piriformis is atrophied is just another pathology.
This might give you hope Menzie. The majority of consultants/specialists tell you that for epidural fibrosis, there's not much one can do but I can assure you there have been great success, but it quite a long term treatment. Look at for a private message with the links and get back to me if you just want to air your views or chat. I'm going for piriformis release on 2nd October so will be off-line for a while after that.
KEEP SMILING :D
Hi Menzie,
Your post breaks my heart. It's just an idea, but why not send a copy of your daughter's MRI to Dr. Frank Feigenbaum? In my case, he proved all the other NS's wrong and was able to help me. I know your daughter's situation is different than mine, but maybe just one more opinion might be the ticket.
His nurse is Debbie West, they are both caring and compassionate professionals.
Good Luck, will be thinking of you, Patty in Oregon
Your post breaks my heart. It's just an idea, but why not send a copy of your daughter's MRI to Dr. Frank Feigenbaum? In my case, he proved all the other NS's wrong and was able to help me. I know your daughter's situation is different than mine, but maybe just one more opinion might be the ticket.
His nurse is Debbie West, they are both caring and compassionate professionals.
Good Luck, will be thinking of you, Patty in Oregon
Jo, thank you so much for the information. I truly appreciate it. Good luck on your surgery on Oct 2. My daughter did get relief from the procedure. Tell Dr. Filler he has got to say positive things to your body as he is doing surgery. It's a good thing. :D I hope your journey goes well and that you have a successful healing. I look forward to hearing from you. And more about your clinical trial. I did send you a reply. Good luck, Menzie
Shirley, I hope all is going well for you. I have thought of you all day, knowing it was your surgery day. For you too, I hope all is going well for you and that you are resting well this evening. I look forward to hearing from you, and about your healing. Good luck. Menzie
Shirley, I hope all is going well for you. I have thought of you all day, knowing it was your surgery day. For you too, I hope all is going well for you and that you are resting well this evening. I look forward to hearing from you, and about your healing. Good luck. Menzie
Hi Menzie and especially D
Thanks for your private message. I've sent my specialist in Paris an email to ask if any of her colleagues are carrying out trials in the States for epidural fibrosis. The University of Iowa are recruiting NOW for trials but for those patients who have fibrosis after radiation therapy for breast cancer, but please DON'T be put off by this as Dr Sylvie Delanian has taken this a step forward. Her theory is that this works on any sort of fibrosis, but it does take quite a time.
I will send you a private message and, of course, let you know what info I get from Dr Delanian. In the meantime, you might like to read the link but remember that this treatment is being applied to treat failed back surgery syndrome where there is evidence of epidural fibrosis, which I have.
Read right through it especially the credits at the bottom. There's strong evidence that this treatment does work. In the meantime, take care, I will be in touch with my story! I'd really like to help if I can. This forum is a godsend.
Jo
Thanks for your private message. I've sent my specialist in Paris an email to ask if any of her colleagues are carrying out trials in the States for epidural fibrosis. The University of Iowa are recruiting NOW for trials but for those patients who have fibrosis after radiation therapy for breast cancer, but please DON'T be put off by this as Dr Sylvie Delanian has taken this a step forward. Her theory is that this works on any sort of fibrosis, but it does take quite a time.
I will send you a private message and, of course, let you know what info I get from Dr Delanian. In the meantime, you might like to read the link but remember that this treatment is being applied to treat failed back surgery syndrome where there is evidence of epidural fibrosis, which I have.
Read right through it especially the credits at the bottom. There's strong evidence that this treatment does work. In the meantime, take care, I will be in touch with my story! I'd really like to help if I can. This forum is a godsend.
Jo
Hello Menzie
Just checked my message and the link hasn't printed how it should be but just click on it and it comes up.....read on.
Shirley - how ya doing honey? Thinking of you and keeping everything crossed for you. Have you managed to see Leesa?
Hugs Jo
Just checked my message and the link hasn't printed how it should be but just click on it and it comes up.....read on.
Shirley - how ya doing honey? Thinking of you and keeping everything crossed for you. Have you managed to see Leesa?
Hugs Jo
Shirley,
I really hope your surgery went well. Best of luck on your recovery.
Brandon
I really hope your surgery went well. Best of luck on your recovery.
Brandon
Shirley:
I hope your trip back home was as comfortable as possible. How are you feeling? Let us know.
Jo:
Good luck with your surgery. I will be thinking about you and wishing success! Keep us posted on your recovery.
Leesa
I hope your trip back home was as comfortable as possible. How are you feeling? Let us know.
Jo:
Good luck with your surgery. I will be thinking about you and wishing success! Keep us posted on your recovery.
Leesa
Hey Leesa
Thanks for your good wishes - just about to pack my bags ready for the off tomorrow. Surgery Friday.
Dear Shirley: Hope everything went well with you. Really look forward to hearing from you.
Yep, will keep everyone posted.
Jo :mrgreen: :mrgreen:
Thanks for your good wishes - just about to pack my bags ready for the off tomorrow. Surgery Friday.
Dear Shirley: Hope everything went well with you. Really look forward to hearing from you.
Yep, will keep everyone posted.
Jo :mrgreen: :mrgreen:
Well, I am home and very glad to be here. Surgery went fine. Dr. Filler said there was lots to do, more than he anticipated. I had lots of fibrosis on the sciatic notch and the nerves he worked on. I got back home yesterday and wasn't too bad considering the travelling but am more sore today, especially in the leg and of course the butt--what's new?
Best of luck, Jo. Let us know as soon as you can. Thanks for all the well wishes. I haven't had a chance to catch up on the posts.
Bye for now.
Shirley
Best of luck, Jo. Let us know as soon as you can. Thanks for all the well wishes. I haven't had a chance to catch up on the posts.
Bye for now.
Shirley
Hi everyone!
I'm back home too! Just this afternoon. I was a bit drowsy when I was told that surgery was very succesful. Like Shirley, lots of fibrosis to release. The only thing which isn't clear is what's happened to my piriformis. I have a good photo of my butt! A long 4" cut from base of sacrum almost diagnally across left butt. Considering I'm not too sore and only have paracetamol & celebrex for inflammation and pain. I was quite topped up with anaesthetic yesterday but during the night didn't require any morphine. I've a follow up appt in 2 weeks time. No real instructions = just not to sleep on my back or put pressure on the wound. Nothing new! Have you Shirley or Leesa any hints, dos or don't to add as an indication of management in the next two weeks? Great to be home! Jo
I'm back home too! Just this afternoon. I was a bit drowsy when I was told that surgery was very succesful. Like Shirley, lots of fibrosis to release. The only thing which isn't clear is what's happened to my piriformis. I have a good photo of my butt! A long 4" cut from base of sacrum almost diagnally across left butt. Considering I'm not too sore and only have paracetamol & celebrex for inflammation and pain. I was quite topped up with anaesthetic yesterday but during the night didn't require any morphine. I've a follow up appt in 2 weeks time. No real instructions = just not to sleep on my back or put pressure on the wound. Nothing new! Have you Shirley or Leesa any hints, dos or don't to add as an indication of management in the next two weeks? Great to be home! Jo
Jo and Shirley so glad that you are both home and on to your recovery. I hope you are blessed with easy and quick healing.
Good luck to you both. :) :) :P
Menzie
Good luck to you both. :) :) :P
Menzie
Welcome home , Jo. Glad your surgery went so well. I think mine did too but I am still having quite a bit of pain. I think I was protected by the anaesthesia at first and the trip home was not bad but I am having more pain now and lots of spasming. It hasn't helped that my financial advisor came to visit me 2 days after I came home and gave me lots of bad news that happened while I was in California. Unfortunately I was pretty heavily invested in one of the banks that had to merge to keep going.
You asked about what we were told. I was not told not to lie on my back and I do lie on my back to ice the whole area. Basically we were told not to do any heavy physical activity until after the first post op visit which I think is 1 month. Mine will be a telephone visit since I don't live close by. Other things were don't stay in bed, not to sit stand or walk more than 15 to 20 minutes, not to lift heavy things, no squating or stair climbing, and not to drive if meds make us drowsey.
As Leesa will probably tell you, I am not the best at doing what I am told. I went over to see my grandchildren today and at least didn't lift the 17 month old but I kept getting up and down from the floor while playing with her which my butt did not like and since my daughter has no bathroom on the first floor I did stair climbing but one step at a time and only using my good leg. I have to say I probably overdid so Leesa I promise I will underdo tomorrow because I know I should take this seriously if I want to heal. Right??!!
I am curious to know whether your ever had a very hard fall on the buttock as I did because the more I read the more I think that is what precipitated mine. It was such a hard fall on the right buttock that I literally couldn't get up for about 10 minutes and I had to crawl to the bed and was left with the worst bruise which took lmonths to go away. The reason I am asking is that more than one article I read showed how a hematoma forms after trauma to the butt followed by scarring in the muscle and subsequent scarring in the nerves as well as atrophy in the muscles including the gluteals which I also have.
Hope you continue to do well and maybe I will too if I take it easier for the next week. Hope to hear from you.
Brandon, how are you doing? Sadie, I stillhaven't read all the posts so can't say much about yours. Thanks Menzie for the welcome home and well wishes.
Leesa, I will get back to you tomorrow but my butt says get up tonight. Also Lynne, I will get to you. I haven't forgotten you and Leesa and I talked about you when I was in Ca.
Gotta go.
Shilrey
You asked about what we were told. I was not told not to lie on my back and I do lie on my back to ice the whole area. Basically we were told not to do any heavy physical activity until after the first post op visit which I think is 1 month. Mine will be a telephone visit since I don't live close by. Other things were don't stay in bed, not to sit stand or walk more than 15 to 20 minutes, not to lift heavy things, no squating or stair climbing, and not to drive if meds make us drowsey.
As Leesa will probably tell you, I am not the best at doing what I am told. I went over to see my grandchildren today and at least didn't lift the 17 month old but I kept getting up and down from the floor while playing with her which my butt did not like and since my daughter has no bathroom on the first floor I did stair climbing but one step at a time and only using my good leg. I have to say I probably overdid so Leesa I promise I will underdo tomorrow because I know I should take this seriously if I want to heal. Right??!!
I am curious to know whether your ever had a very hard fall on the buttock as I did because the more I read the more I think that is what precipitated mine. It was such a hard fall on the right buttock that I literally couldn't get up for about 10 minutes and I had to crawl to the bed and was left with the worst bruise which took lmonths to go away. The reason I am asking is that more than one article I read showed how a hematoma forms after trauma to the butt followed by scarring in the muscle and subsequent scarring in the nerves as well as atrophy in the muscles including the gluteals which I also have.
Hope you continue to do well and maybe I will too if I take it easier for the next week. Hope to hear from you.
Brandon, how are you doing? Sadie, I stillhaven't read all the posts so can't say much about yours. Thanks Menzie for the welcome home and well wishes.
Leesa, I will get back to you tomorrow but my butt says get up tonight. Also Lynne, I will get to you. I haven't forgotten you and Leesa and I talked about you when I was in Ca.
Gotta go.
Shilrey
Hi Jo! Congrats on having the surgery "behind" you. That's a huge hurdle. You sound pretty good which makes me happy. I think Shirley pretty much covered all of the 2 week do's and dont's. All I can say is to take it as easy as possible. Surgery is a major thing and taking care of yourself is key. Let yourself heal. It's real hard for most of us to do very little but you gotta. The 2 weeks will go by faster than you think it will.
Shirley:
I read your post after I sent you an email. Hoping you really will take it easy tomorrow!! Again, I'm glad you are home and that the surgery is done. Thanks for keeping us posted on your recovery. I'm glad you and Jo are going through it at the same time. Kind of nice to have a partner. Hearing everyone's experience while I went through surgery and recovery was so helpfull.
Take care you two.
Leesa
PS: Hi Menzie....how are you doing? How's your D?
Shirley:
I read your post after I sent you an email. Hoping you really will take it easy tomorrow!! Again, I'm glad you are home and that the surgery is done. Thanks for keeping us posted on your recovery. I'm glad you and Jo are going through it at the same time. Kind of nice to have a partner. Hearing everyone's experience while I went through surgery and recovery was so helpfull.
Take care you two.
Leesa
PS: Hi Menzie....how are you doing? How's your D?
Jo -I hope your recovery is speedy without complications. And, most importantly, that the surgery resolves your pain. Once you have your two week follow-up, please tell us what the surgeon did to the piriformis muscle. Thanks, Mary
Shirley - Best wishes to you as well. Here's hoping for a steady recovery, both for your body and for your investments. Please stay in touch.
Shirley - Best wishes to you as well. Here's hoping for a steady recovery, both for your body and for your investments. Please stay in touch.
Shirley and Jo, glad to hear everything went well. Fingers crossed for a speedy recovery. I am still trying to decide whether to have the surgery so your experiences will definitely help me make up my mind. In the meantime, my physical therapist has told me to try prolotherapy. It helped her a lot after all else failed, so i'm going to give it a try. The doctor I just saw spent a good hour examining me and actually feeling the muscles, joints, etc, which is more than I can say for any doctor i've seen so far. I'll post updates on here to let you know if I'm getting any relief. Has anyone else out there tried prolo?