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Donna: Thanks for the head s up. We may have felt abandoned (really!!). Good luck with your hectic schedule but enjoy all that you can. Thank you for hanging with us.

Linda: WOW, you said it all. I hope you are able to continue to get relief. You have a great attitude which is difficult to maintain. Thanks for your positive outlook. I for one needed to hear all of that.

Shirley: I hope you get that pain down. It s so *#$%@#!* hard to go from good to bad, day after day after day. We re here for you.

Menzie: The waiting game is just that. You ve made it this far, keep faith that your D will continue to improve. Expect good and bad days. Always good to hear from you.

Lynne: How are you feeling??

I m still holding at overall better yet wishing I was pain-free but I ll take what I have for now. I stopped walking, just because. Hope to get back to it. Work is crazy busy and I don t feel like doing much else these days. And that s all I know about that.

Take care everyone,

Leesa
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Julie, I live in Middle Tn just south of nashville about 50 miles.

TO all of you who are considering the resection surgery with dr. filler: I too am having surgery but with one of the best surgeons and inexpensive in the world. His name is Dr. Henry Bohlman and he removes the complete muscle and I talked with a woman here in Michigan who had him remove hers and after 3 months, she is 100 % better. She has Blue cross and only paid 500 out of pocket! His surgery was 12K plus the usual extras, but nothing like dr. fillers astronomical fees! He is in Cleveland, OH and does one of these a week.I saw him 2 wks ago and he was positive I have P.S. I believe it is on both sides, but he will not do both at once, that is the main downfall, but i only live 3 hours from there, so it is doable, I guess. I feel for all of you, but maybe give this dr. a call. Google him. Good Luck! Denise

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Dr. Bolhman has been mentioned here before. He is an option, especially for people east of the Mississipi.

I just want to remind anyone considering surgery - there are no guarantees with this surgery. Yes, most people posting here have had positive outcomes. But that is of little consolation to those patients who have had negative outcomes. And all of these doctors (including Bolhman) have had unsuccessful cases.

Surgery should be the best & last option. And before surgery, you should acknowledge the possibility the surgery may not work for you.

Sorry to be such a downer. I'm just reminding people to be realistic. Mary
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Shirley

I'm still here.

Summertime in Texas and I havent been on the computer much. Trying not to think about PS too much.

The botox injection was worthless and actually aggravated whatever I have going on. That was five or six weeks ago. I've actually felt a little better in that area the last few weeks. Maybe because I've been up and about, who knows.

My phys med Dr. wants to try some prolotherapy, the Pain Dr. wants me to think about the little wire thing they stick in your back.

I had hernia surgery back in December, took some physical therapy several months after that and seemed to stir up the scar tissue in that area. Just another problem to deal with. Probably have to get cut on again for that.

Anyway, I'm still reading the posts. Just havent had much to add lately.

Aztec
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Shirley,

Sorry for the delay in replying. Yup, staples are out and the incision pain is, well, painful! I would add a profanity but I'll be good. At this point I'm just trying to recover from the surgery itself.

No word on the blood vessel of mystery. I am going to get the operative report in the next few week and will let you know, verbatim, what he did in there.

Julie
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Good to hear you Aztec. A Dr. back in Dec, scheduled our D for a spinal stimulator. Said it could mask some of her pain. We made the appt, but because we thought it was too soon, and we wanted to treat the problem, we decided to wait. Although at that time they only said they THINK her problem was from scar tissue. Now 1 1/2 years later, if this surgery from Dr. Filler hasn't worked. That will be our only option. She has had intense physical therapy prior to her March surgery. We would drive an hour to get quality PT, several times a week. Did not really do much.

I will note that she said she had a 2 good days, in regards to her pain, because she spaced her meds out longer than is her usual. 3rd day not as good. Yesterday, I think we were back to the same old day. It has been 9 weeks and I am banking on changes occuring soon. As she is only 21, I need her to have a life with friends and activity. Our youngest is graduating HS next week, and our D will not be able to attend. It is very hard to have one lively prickly rose, and a withered one as well. Our D watches all the activity of her sister and I know it is hard. Especially as she was the active one.

I hope you all are well. Menzie
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Hi Menzie,

I can really feel for you D. I am 22 years-old male and my story is very similar. I used to be very active as an athlete and worked out around 3-4 hours a day on average. Because of my pain, I haven't worked out for more than 4 hours in the past year. My pain is so debilitating that I too can't sit through a graduation ceremony or even lectures at college. I have been through intense physical therapy and two back surgeries with little to no results. I can really feel for how your "daughter" is doing. This pain has changed my life completely. I understand how difficult life can be. I will never again put people down for being dysfunctional or not normal because I know that I will never begin to completely understand another person's situation. I want nothing more than to dedicate my life to helping others by alleviating suffering.

I too have been recommended to get a spinal stimulator but have held off because I am not willing to concede to the pain. I want to look into every possibility before I get a device that will only mask the pain and will make it impossible to get an MRI without having the device removed first.

My pain has put me in a situation where if I don't get better by this summer from Dr. Filler's piriformis surgery then I will have to put my education on hold and live with my mother or father. However, this would be terrible for me because of my inability to work unless I can find a job where I can lay down, and because I would be away from my girlfriend who is attending college right now and I love very much.

I just hope everyone the very best. This monster of a problem is so difficult. It is hard on the victim and on his or her family and friends. My family and friends have a really hard time understanding how the pain works and affects me. Even the most compassionate people become upset because they see me as a person that can move and talk so therefore I am normal. They don't understand that I have to wait for my pain meds to kick in before I get out of bed and do things in the morning. They don't understand that sitting up for more than 25 minutes puts me in severe pain unless I can slouch and get pressure off of my butt. But at the same time I completely understand how they don't understand. This kind of pain was unconceivable before I got it. I thought pain was an ouch or an ache every once in a while but not an ache, bite, pinch, rip, and nausea, all the time. The pain used to be way more manageable but it has gotten worse over the years.

I am sorry for such a long message. I just feel so strongly about wanting to help others who are in chronic pain and in finding the solution for my own pain. I will keep everyone updated about my surgery in June. I wish everyone the very best and if you have any questions or need help with anything, please let me know.

Take care,

Brandon
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Hello all.

I've followed this thread for a couple weeks now and I've spent the last few hours skimming over most of the previous posts. It's great to find some people that I can actually relate to with what I've been going through.

I have suffered from sciatic pain for over a year and a half now. Sports and exercise were basically my life. I ran, played baseball, basketball, tennis, and even competed in Dance Dance Revolution tournaments all across the country.

Last December I was training for my 3rd marathon when I hurt my leg. What's funny is that unlike a lot of other people there was no sudden fall or incident that started this hell. I simply remember my left hamstring being unbelievably tight during an easy run. I didn't think too much of it because little aches and pains aren't real uncommon during marathon training. So, I kept running... but the tightness wouldn't go away, and eventually it became painful. The pain progressed from the back of my thigh, into my outer calf, and into the bottom of my foot. Eventually it got to the point that I couldn't physically run anymore.

This started the parade of doctors that it seems most people here have been to. By now I've been to 2 orthopedics, 4 PT's, an osteopathic doctor, a chiropractor, had acupuncture, bought an ultrasound machine, and done more stretching than I had done in the previous 20 some years of my life combined.

Quite obviously the first theory was that my back was the problem. However, 1. the MRI's showed nothing relevant, 2. traction and physical therapy didn't help, and 3. an injection into S1 provided no lasting relief. I never liked the idea that my back was the problem because I've never felt any sort of pain in my lower back.

I had an MRI of the hip and it showed (and I quote), "There is minimal increased signal intensity in and around the right gluteus medius-minimus tendon insertion on the greater trochanter compatible with tendinosis. In addition, there is mild feathery edema along the left piriformis muscle near the musculotendinous junction." So I went to physical therapy to treat piriformis syndrome which also had no effect. Next I had a fluoroscope guided injection into the piriformis muscle... which also had no effect.

So now I have no idea where to turn. I'm not even sure that I have piriformis syndrome because my symptoms are a bit different than a lot of people here. The epicenter of my pain is on the back of my thigh, right on the border of the butt cheek and the thigh (if that makes sense). It then radiates down into the calf and into my foot. I am able to withstand some activity, but I always pay for it later. For instance, I have no doubt that I would be physically able to go for a 5-6 mile run today with only some pain. However, I also have now doubt that I would go through about a week of excruciating pain if I were to do so.

If I do nothing, and I mean NOTHING, my leg pain is manageable but it never goes away. I don't have the same problem with sitting that others here seem to. My leg only hurts in bucket seats, like my car. My current super scientific theory is that those types of seats pull on some sort of muscle or nerve that messes with my sciatic nerve. What's weird is that nothing seems to make my leg pain better or worse. While sitting doesn't make my leg any worse, laying down doesn't make it any better. I was on 300 mg of Lyrica a day for a while and I the only thing it did was make me tired. The only drug that seems to make any difference is Aspirin. I take them as needed when the pain gets real bad.

I almost wish I had a clear cut case of piriformis syndrome so at least I'd know where to go from here. I'd be willing to go see someone like Dr. Filler but I'm not sure whether that's the route I should be taking. What I do know is that I can't live like this, and I will do anything it takes to fix my leg. I feel like I've lost nearly 2 years of my life. I live alone in my apartment and all I seem to do is sit around stretching my leg and crying that this is what my life has come to.

I realize this was very long and I truly appreciate everyone that takes the time to read through my post. I wish the best to everyone suffering through this nonsense.

-TJ
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TJ3, I read your post. I am so sorry that at this point in your life you are having so much pain and difficulty. All that I can say, is You are not alone. My daughter has had this since the end of September. She used to be athletic and was a very god runner. It happened just one day. She just started having this pain, which she was hospitalized for. She had ER trips too. You said you are having pain from the way I read where the buttock blends into the thigh, or as most women who are 35+ their butt cheek fold. :) I am no doctor but most of your symtpoms do sound like what most of the PS sufferers have. Maybe you need to get MRN done to get a solid diagnosis. Then you can explore the options for yourself. You are to young to be disabled. I am glad however that you can be mobile and have some activity. No one around you personally will be able to totally comprehend what you are going through, and since you are not mangled in some manner you must be well. Which as I watch my D, that just plain crazy. Just because you look well does not mean you are pain free. My D is 9 1/2 weeks post op. She can walk a mile but it is painful. She just has to get out of the house. As you live alone, I hope you have a positive network of people who can help you. At least just talk and watch t.v. These are things that my D does not have through others, but she does have us to sort of provide a buffer for the loneliness She was a junior in college and because the pain is so bad, she has to live back home with us. All of her friends are out having a life, in school, and growing as young adults should. But right now her life is at home with us. We are fighting the fight, and hope there is an end in sight. I will add you to our thoughts and prayers. Since you have read the prior posts you should know some options as to where you can get true MRN. That is probably your first step. Good luck. Menzie
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I did not spell symptoms correct. I did not read my post before I sent. :)
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TJ3
I agree with Menzie (Hi Menzie!). From my experience and getting to know people on this forum, not all symptoms are the same for PS. I never had much trouble sitting either but was diagnosed with PS and had the surgery Jan 29. So far, I ve improved A LOT. Have some set back days but still nothing like the pain I was having before. I walked 2 miles (hilly) yesterday and while doing it, not too bad but do have some pain today in my butt. However, not much pain in my leg at all which was my main complaint (and it was debilitating before). I do believe it will continue to improve. I totally understand the pain never goes away feeling. It s so unbelievably draining on the mind, body and soul. I also agree that maybe an MRN is a good idea just so you can either confirm it or count it out. I wish you all the best. Please keep us posted on how you are and what you end up doing.

Brandon and Aztec:
Good to hear from you both but sorry to hear you re both still struggling.

Leesa
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Hi TJ,


I really think you should get an MR Neurography scan at one of the Neurography Institute scan locations. You can find this information at neurography.com . More information about Dr. filler is at nervemed.com .

I am sorry you are dealing with sciatica pain too. I am also in my early 20's and the pain has been so difficult. I have seen so many health care professionals like you have, without any pain relief. Dr. Filler has given me hope that my condition can be treated. If you see him, make sure you get the MRN, see Dr. Filler and get the injection on the same trip, otherwise you will have to come back and spend more money on airfare. It costs a lot of money to get everything done because he is out of network but I think it is worth it. I am at the point and it sounds like you are too, where I will do anything for pain relief. If someone told me that cutting off my hand would get rid of my sciatic pain for life, I would do it.

Hopefully we can get back to being active again. I wish you and everyone the best.


Brandon

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I hope everyone has a great day. I have you all in my thoughts and prayers, although I am not sure if they are heard, or if I just talk to myself in my head. :) Menzie
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Hi everyone,

I have piriformis surgery scheduled on 26th with Dr. Filler. I am very excited and hopeful for the first time. No one has ever been able to give me such a definitive diagnosis and positive prognosis as Dr. Filler has. I feel like it has been a long journey with many sacrifices. I just feel for anyone who has been through this pain and I can't begin to imagine how bad it can be for some. I am going through a lot of pain and it is preventing me from functioning as a normal person but I can't begin to imagine the scope of pain some are suffering from. My heart and compassion goes out to everyone suffering from this pain and to the wonderful friends and family who provide the much needed support and only want the best.

Take care,

Brandon
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Good Luck Brandon. I truely wish you the very best. My D is 10 weeks post op. Her ankle and outer left calf seem a lot better. Her left buttock and "Freddy Kruger" pain in the butt crack is still raging. Because of the slight change in her ankle and calve I am still holding some slight faith that she is going to continue to get better. It is truely the most difficult thing to watch. Today she just cried because she wants to be able to do things. Go places and be a normal person. Only living on a couch is not much life, but for now we will just keep hoping. Good luck and thanks for keeping us in know. :) Menzie
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