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Thanks Brandon. Glad to hear you are somewhat feeling better. 20% is better than nothing. I ll keep high hopes for you that you can return to school in the fall. Is there anyway you could keep a light schedule in the fall? Where do you live? That s horrible that you don t have A/C .yikes. Stay cool.

Shirley, very funny about the 2 day recovery and all of your thoughts! It s true that you should be able to walk around at 2 days, even day 1 for that matter. I think you re right, I may be feeling much better if not for this new problem. Oh well as we say.

Thanks for the thoughts and prayers Menzie. I understand going from an athlete s body to a couch body. Hard to take. Maybe we ll all get our bodies back someday. I ll be 45 this year and would like to look like 22 again ..hmmmm. Even without physical problems that s probably shooting too high! I can dream can t I??!

Hope you re all having as good a day as possible.

Leesa
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Leesa,

Everything is relative. I'm 57 and long to have the body back when I was 45 - your age! My PS journey started a year later at 46. I'm praying that your new proceedure will fix you right up! You've suffered enough so I say it's time you were released from all this and move back to your former self.

Note: I just waved a little sparkly want over my computer. Hopefully some of the fairy dust reached you. Ahhhhhh.....if only it were that easy.

Take care,

Margie

P.S. My physical therapy is helping quite a bit. I go twice a week in addition to walking and swimming. I really feel like I'm making some progress so am keeping my fingers and toes crossesd
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Hi to all fellow butt warriors.

So sorry I've been gone so long.....its been a very busy summer and I'm just not checking back as often as I'd like.

Aztec, I hope my answer isn't too late about the RF treatment. I've had 3 so far and they tend to last between 4-6 months for me. While the treatment itself is awful, the results have been great. I'm usually in the treatment room for about 2 hours, while my doctor burns the end of the nerves under x-ray guidance. I'm pretty sore for the next day, but after that back to "normal".
I agree with Mary that it probably is a band-aid that just deals with the pain and not the causes. But until someone comes up with a treatment that restructures the entire lower half of my body, I'll take what I can get. 4-6 months of pain relief at a time is great.

Shirley, I wish you a great "two day" recovery!!! Even though I seem to have recovered more quickly than the average, two days is stretching the imagination quite a bit! Two weeks....two months....but it doesn't hurt to dream and be hopeful. Just be sure you keep a bit of reality in there too. I'm really glad you have a date set.

Leesa, praying for your upcoming surgery and that it will give the much deserved relief.

Menzie, hang in there. Maybe the implant will be the answer and your daughter will feel better.

Hope everyone is having a good day.
Donna
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Donna, it was great hearing from you. I am hoping the implant(like a pain pacemaker) is not the way, for some odd reason if my daughter needed it for her heart-pace maker- I would be ok with it. But somewhere in my mind I really think she can be well. Maybe I am just seriously crazy and want to try everything else because I am not intouch with reality.

I feel like I am slowly becoming nothingness. I try to stay hopeful, yet, the here and now just seem so forever like. Maybe things can get better but I can not imagine living like this for much longer. Watching is making everyday harder and harder. To have to live with the pain, I can't imagine. I know people say there is hope, but truly sometimes there really isn't hope. I guess it could be said we are not that happy at the moment. It seems like we make a little progress then boom the big crash comes. I know when my D was having some good moments she then started stretching and doing some leg lifts maybe this made the pain worse. She hasn't done the leg things for a week now.

The other news is that I have to go back to work as the Summer closes, so she will be home again, alone all day long. I am trying to put a schedule together for her, like on the hour she goes out and walks around the block. Maybe several short walks will do her better than her 1 mile walk. After her walk around the block, she can do some light stretching, she would repeat this at the top of each hour. As you can see, I am still trying to find a way to heal my D. She seems much younger than 21, and seriously I feel much older than almost 40. :( :( :( :( :( :( :( :?
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Hi everyone - it's been some time.

I'm from over the pond and after seeing around 8 or 9 specialistS (not counting the PTs, therapists, chiros, osteos, cortisone injections, botox and a previous negative pelvic MRI), my new Neurosurgeon sent me for a repeat pelvic MRI. With these results it really does prove that it
depends on the skill of the professional who is interpreting the scans!

It's a pity I can't sit long enough on a plane to the States, but at least I have found someone in UK who might be able to help me. even though MRN isn't available here - yet! This is really an medical report, not a blog!

Referral for pelvic MRI as follows:

"This lady presents with a painful left buttock? Piriformis syndrome?
Sciatic nerve entrapment.

Technique:

Axial coronal and inversion recover (1) and proton density imaging of
the pelvis and buttocks has been performed.

Findings:

The piriformis muscle is atrophic with a decrease in size relative to
the right side. There is no fatty infiltration or denervation. No
focal lesion is seen. The sciatic nerve seems to exist normally into
the thigh and passes beneath the piriformis muscle and not through it.
The sciatic nerve remains nicely encased in fat and is not
particularly swollen to suggest any entrapment. The right sciatic
nerve is also preserved.

Buttock musculature is normal with no collection, mass or scar tissue
seen. Sacroiliac joints are preserved and the symphysis pubis is normal.

Conclusion:

Asymmetry of the pirifomi with the left muscle being small and
atrophic relative to the right. However there is no clear sciatic
nerve entrapment."

I had spinalL5/S1 fusion . Removal of metalwork . Still no better. In fact I had the butt pain before I had the spinal surgery. Makes me wonder!?! I have been left with chronic scarring around the S1 nerve roots, worse on the left than the right. I had a laminectomy on the left - not sure whether this was to harvest bone or not.

After exhausting all the possible conservative regimes including one
try at botox which made me very weak for ages, with severe flare up of
symptoms, I'm actually going for surgery. Release of piriformis,
decompression of sciatic nerve. Scheduled for 3 October.

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Thanks Margie! I believe the magic dust will work. SOOO happy to hear you are still making progress. Keep it up.

Donna, great to hear from you as always. Thanks for the prayers. Are you still having RF treatments or were you talking about treatments before your surgery? I hate to think you are still in need of that.

Oh Menzie. It is hard to keep hoping but you just never know where the next thing or next month will lead you and your D. Lynne struggled for so long and is now doing much better so as I always say it is possible . Always thinking of you and hoping for the best.

Jo: Good luck on your surgery in October. Let us know how it goes.

Leesa
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Leesa, Unfortunately I've had two RF treatments after surgery and the SI joint continues to be an issue for me. Dr. Filler wasn't hopeful that piriformis surgery would help the SI pain, and he was right. The RF treatments allow me to be relatively pain free for the 4-6 months and so I'm happy with that.

We're leaving for N Ireland on Monday for our son's wedding reception with his bride's family. Since they were married in the US, they're having the reception there. So it will be a long time before I check in again.

Take care everyone.
Donna
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Donna, thanks for remembering us all. You have been a leader here, and I really appreciate all of the info that you have shared with us. Have a great trip.

Leesa and Shirley, your surgery dates are upon us within the next few days. Please know that I will be saying positive thoughts for you both. Good luck, and may this procedure set you both free of pain.

I hope you are all having a great weekend. Your friend, Menzie
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Good luck Leesa!!!

I am still doing well. Its been 8 weeks since the sciatica let up. I still have some recurrance of pain if I do too much. Sitting too long, Bending, vacuuming, squatting and lifting, all have to be done very carefully still at 8 1/2 months post op. But when pain does come it is very light compared to before and it is usually gone the next day. I did hire a cleaner to do my floors and its been great. I hope to do it myself again oneday. All in all I am feeling like the nerve is finally healing. I still have butt muscle spasms when I do the above and the nerve gets irritated and reacts, but as I said, its not the mind numbing pain like before and rest, ice and a days time bring it back to painfree. I guess I will just have to be a little princess to stay painfree !!! I take motrin if needed only and I swim as much as possible, nothing fancy just getting those muscles to work, so far swimming does not aggravate it, it did prior to surgery so thats a plus.
I still wonder if complete removal of the piriformis muscle is better as its the muscles that tense ,then the nerve pain starts. I had a resection by Dr. Filler. I wonder why he doesn't remove the whole thing , never asked him, maybe a person seeing him now could ask that question to him??? It seems that would solve the future muscle spasms, or maybe its all the muscles he cuts thru?
Any way, just wanted to give hope to anyone in need of it. This recovery has taken way longer than anticipated but I guess we all heal at different paces. I hope I continue to improve, it took 6 1/2 months to get any improvement so anyone who had the surgery, take note and stay positive. It was hard for me as the oldtimers here know, they had to listen to some belly achin from me (thanks all of you). I may never be 100%, its hard to accept, but if I can keep the sciatica ay bay the majority of the time, I'll have to accept that and be thankful.

Brandon, how about an update, you too Julie ???
Margie, hope you are still doing stellar, hows the PT ??
My best to all, Lynne
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Hello,

I think my pain is continuing to get better. I have a lot more energy than I used to and I need less pain medication. I am so glad I got the surgery even if I don't get any more pain relief. I am hopeful of even more relative pain free days though! I can at least sit up now and stand without being in unbearable pain. I usually need more pain medicine if I plan on sitting up for more than 30 minutes but I can do it without going insane. I went through so many doctors and health professionals before I found Dr. Filler and I am very happy I found him but I am also very disappointed that our medical community is so stubbornly attached to spine disease as being the only reason for sciatic pain. Hopefully things will change soon.

Good luck Leesa, Shirley and Jo with your upcoming surgeries. I wish you the very best.

Leesa: I don't have A/C but it really isn't needed except for maybe a couple of weeks out of the year-- I live in Corvallis, Oregon. I am taking a light course load this coming Fall--only 12 credits.

Menzie: I really feel for your D. I am 23 and I used to have a very athletic body with many hopes of being a phenomenal athlete and all that changed when I started getting sciatic pain. I am now 260 pounds of chubbiness instead of being stacked with muscle. Your D is very special to have such supportive parents. I am sure it means the world to her. The spinal stimulator has always been a second option for me if the surgery didn't work and I know it is a very hard choice to make. Did your D get another MRN scan after her surgery with Dr. Filler and if so, what did he say? I know the screws were thought to be an issue but is that what Dr. Filler thought?

Take care,

Brandon

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Hi all, can't post much now except to say from allof kus that we will be thinking about Leesa and hope this is her final answer. Lots more to say but my son is in the middle of a separation andit has been a rather stressful week as I have only just found out.

Great to hear from Brandon and Lynne. Alos Jo, what good news that in the UK there are doctors recognozing P.S. I too have an atrophied priformis on the right and Dr. Filler says it is that kind of assymmetry that is one sign of P.S. I think he did lots of his research in England.

Lynne so glad you are still better. Brandon same with you and best of luck starting back to school.

Am going to watch Bill Clinton speak at the D. convention.

Good luck Leesa tomorrow.

Shirley
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I just found this website and have spend the past couple of hours browsing through it. I am a 35 year old male, and I have been in pain for a year and a half now, and like many of you, have tried everything -- physical therapy, acupuncture, cortisone and botox injections, etc. None of it helped. I finally found Dr. Filler's website and saw him a few weeks ago. The neurography showed that my sciatic nerve is inflammed not only at the piriformis level, but even more so lower down the leg, in the crease underneath the buttock. The pain extends from my lower back all the way into my foot and toes.

I am taking 3 percocets (10mg) and 2 oxycontin (2mg) a day which is a lot, yet not enough to make a significant difference. I have managed to keep my spirits up until recently, but i have been less and less able to function and am spending most of my time in bed, icing, and even writing emails and making phone calls has become an ordeal.

It seems that surgery is my last option, however I am very nervous about the possible side effects such as my gait being affected, a pain increase, etc. Dr. Filler is planning to make 2 incisions, one for each trigger point. In addition to his staff being completely disorganized, I have been very uncomfortable about him making the surgery sound like a piece of cake, that I would be back on my feet the same day and could resume all activities right away.

I used to be very active until I had the bad idea of building an Ikea wardrobe and twisted the wrong way. That split second seems to be what caused my current problem. Dr. Filler recently injected botox which ended up paralyzing my hip but didn't take the pain away, and although i am slowly going back to normal, i've been limping for several weeks because of it.

I know there are many entries here, but I was hoping to get the latest info... How many people out there have had the surgery and wish they hadn't, and how many are glad they did? I know healing can take many months, but what I'm not clear on is whether the healing everyone is talking about is the pre-op pain getting better, how healing from the surgery? How bad is the pain afterward? I am concerned about it might affect my gait, but my biggest concern is an increase in the pain, which I don't think I could handle (and I am amazed at the level of pain many of you out there are putting up with).

Thanks!

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And to you, Menzie please don't fade away to nothingness. We all love you. It must be hard tobe returning to work with your D, still at home in so much pain and I know it must be hard to hold onto hope sometimes but you must always know that yoou have done everything you cna and will continue to do everything you can--you are a true fighter and an inspitation to all of us who have to fight.

Just read Canicks post and more to you a little later. So sorry you are having to come to our forum but welcome. I am scheduled for surgery wiht Filler too in Sept.

Shirley
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CAnick72,

I had piriformis surgery with doctor filler about 2 months ago and I haven't experienced any problems with my gait. Dr. Filler also told me that not one person has had problems with gait after surgery. Also, my post op pain wasn't that much worse or better than the pain I was going through before surgery. I was actually excited because I felt more soreness pain and less sciatic pain. Most of the surgical pain was gone in about 5-7 days except for some lingering soreness around the incision site. I am now in about 25 percent less pain. I hope this info helps. It sounds like you have tried everything and I would definitely recommend surgery with Dr. Filler. Just be prepared for a long recovery. It can take up to 6 months or longer to notice significant pain relief. I guess nerves just take a long time to heal.

Brandon

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Shirley, I'm trying to be fade resistant, :) but I do have to say it is hard. We are trying very hard. I am sorry about your son's separation. Have fun at the convention. Thank you.

To our surgery friends of late August, I truly hope you are doing well.

CAnick72, My D had surgery exactly 5 months ago. For the most part her leg pain was/is better for having the surgery with Dr. Filler. We would do it again. But I will say it is/was not a piece of cake recovery. My D is 21 and has been in pain for just about 700 days or lol 2 years. She had pain and going to the bathroom was irritating for sitting is the most painful of all. No leg-gait issues nor have I seen any on this site. It is a chance, and no guarantee, but where are you now? I also have not heard of anyone having more pain long term after the surgery because of the surgery. Now that was a crazy sentence. :wink: My daughter I hope is still healing but she also has had her fusion hardware removed 8weeks ago. I'm not sure what you should do, but keep on trying.

Brandon, You do need AC in Corvallis.lol :) :) :) We just live South of you by 100 miles. Are you a Beaver? I am so glad to hear that you feel good about your recovery. I am truly happy for you and jealous at the same time. Keep up the good work and do not over do it!!

To all my friends here, I just want to say thank you again. YOU are a real blessing to me, and help keep me fighting the fight. Getting the information that you all share out on the web is helping people, and giving hope. Have a great tomorrow.

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