Piriformis release surgery, discussion and information

Aztec, my recollection is that Donna did quite well after the SI RF ablation. She has had several but it seems to me hers lasted a year, at least her 1st one. I may be wrong so try to find her posts. You are probably too busy. You should go back and research her comments about it because others have asked her about it. My sister is having them on her facet joints but I haven't talked to her this past week because she and I have both had vistors.

I just got news that the fee St. John's Hospital will charge me is way, way less than Cedars Sinai would have charged me. Will tell you more later but have been sitting too long.

Margie, I loved your post about your grandchildren and your 13 inch scar. Your posts are always so funny and you are such an optimist. You always make me laugh.

David, sorry you are having troubleagain but if it is caused by scar tissue then maybe you can get the injection that LYnne had. She seems so much better. Lynne, I will get back to you soon. And David you always make me laugh too and so does Leesa and actually everyone has made me laugh at some time . Maybe you have to have a sense of humor when you are in pain all the time

Menzie, how goes it? Always think abot you and your D.

I think we should all have a butt/back/Si joint and what ever that was you had, Candy, reunion someday, how about in Hawaii. Sound good, Lynne?We can all show off our scars and Margie will have the most impressive. And Julie we would all want you there. Even though you aren't posting I hope you are follwing everyone's posts because we haven't forgotten you and hope so much you are doing better than youur last post said.

I will post more but it is getting late my time.

Bye for now.

Shirley

Maybe if I have time I will try to find Donna's post and tell you the page, Aztec

Oh, yes and by then Menzie, you D will be all better and you are definitely invited to the reunion. Your scars are on the inside and you have been a great supporter of all the butt/back warriors..

Shirley

Shirley, your post seriously made me smile. Today I have been a bit down, but your post truly made me smile in my heart. I will come to any reunion to honor all Butt Warriors. :) My D seems to have a few good moments or hours for a few days, and then she crashes and PAIN,PAIN,PAIN. I don't know. But she has been stretching and walking.

She has had the screws out for 37 days. So maybe I just need to be more patient, but it is about 2 years since the onset of this and I hate time. I do think she has had more painfree/less pain moments since having the screws out, but she is now having the back of thigh and calf pain, which we thought we had solved with Dr. Filler. I am hoping it is just flarred and will somehow magically go away.... Well, again Shirley, you made my day. SEE YOU ALL SOON, LOL :) Menzie

Hi I had the surgery with dr. Bohlman in Ohio almost 5 wks ago on July 8th. I
did not have numbness in my legs, but the hot burning pain in butt and horrible aching in butt when sitting, standing, biking, bending. I had to quit my job also.I suffered for 2 years before i found out on this forum there was a surgery. THANK GOD I FOUND THIS SITE!!! I was very sore and not able to do much until recently. I can drive now, as I had the left side done, however I had PS on both sides and dr. won't do both at one time. I am glad. He removed the whole muscle and a fibrous band that was on the nerve also. the most discomfort i am finding is the burning nerve under my leg near the butt and down to the knee. Nurse says it is normal and can take many months to heal. I hate that part. I want to do things now! I am very weak but have started doing a half hour in the pool, like Candy and I think it is helping. But now the right side is acting up and they told me to wait 2 months and then ask about that surgery. They said rarely does anyone come back for the other side, is that because surgery is such an awful ordeal?I wonder. But I go see the Dr. on Aug. 29th for a recheck and I will inquire about the other side.
Anyway, i have been reading this forum for many months and just have not been able to sit long, so i thought I would bite the bullet and write and suffer later. I am not able to sit for more than 20 mins mainly because of the right side now. BUt I think if it wasn't for that I would sit longer. I am no longer on any drugs, except ibuprofen or a Vicodin ev. now and then. That could also be why I am so sore these days. I know surgery takes a long time and it has only been over a month so I will be patient. Just wanted to let you all know how my experience went. I feel that if they don't remove the whole muscle that you could have a lot more probs. later like spasms, etc. My dr. just takes it all out and is done. My incision is 4 inches. It is still very sensitive but much better.
I can now put my socks and shoes on after a very trained massage therapist lightly massaged the awefullly tight muscles near the incision. I was nervous and kept telling her not to go there but she persisted and it really helped. I got lucky with her, going weekly now. I live in MI by the way and Dr. BOhlman's surgery has only costed me $300 so far, but still waiting on the hosp. bills.
Candy-Was your cost similar? I talked to a girl from MI on an MS forum who told me about Dr. B.and she had surg. in Feb and felt 100% after 3 months! Her total cost was $500 and she and I have Blue Cross.
that is how I keep motivated!
THanks for listening.
Denise

DMJames, Good to hear about your surgery. It is also good to hear that there are others Dr.'s in other parts of the US doing this surgery. My D has the condition and she is about 136 days post-op but I'm not counting. :) She is unable to sit!!!She is only 21, and she has no life except for myself and her father and the never ending reality shows.

Anyways, glad to hear from you, and please keep us posted. I know that although I am not the pain sufferer, I gain so much support from everyone. This site has truly been a blessing and gives me hope that my daughter can be healed.

Denise, thanks for posting. We like to hear from everyone who has had this surgery. As you see on our forum it takes time for healing to occur. You will hear from the others but I find people don't post as much on the weekend

I am having surgery in the fall and will probably pick my date sometime next week.

I hope you keep getting better. I think Margie has also found massage helpful. Right now I can't even let anyone touch my right butt. So I am hoping that once the surgery is done then I will be able to let smeone work on all the tightness.

Take care and keep posting as you are able to sit longer.

Shirley.

Shirley

Hi, everyone, thought I would update since joining this forum in May. Th e onset of piriformis problems started last Thanksgiving. I had 2 cortisone injections finally in May, which have helped bring the pain level down from a 10 to a 5, but has not really improved my ability to sit. At least I don't have as much pain when I stand anymore.

I am on disability from work, and trying to keep my spirits up. Have a meeting with a vocational counselor in Sept to try to some up with a career that doesn't involve sitting/computers. I guess career is a misnomer - it's just anything that will help me earn income.

I sit for meals briefly, and a few quick car trips, but that's about it. I noticed that I am getting vericose veins from all the standing. I watch TV on my back with my legs/butt up high - I look like a bug on its back, I guess.

I can't get more cortisone shots until later fall timeframe (only allowed 3 every 6 months), so I have to hang on with the pain until then.

Am interested in everyone's results with the surgery, and hoping that might be an option for me down the road. My husband has stuck with me thus far, but no idea how long his "patience" will hold out. Anyone else facing the same problem? It just compounds the pain issues.

LindaV

Just wanted to say HI to everyone out there. Not much change in my D. She is having either good moments in time, or really bad days. She took the psychological part of the implant process. It came back as invalid because they said no one registers that nice. Well, I said if all the questions that she did not pass like the kindness ones, revenge on others ect. came back like that, I had to tell them that she IS that good. Even in her dark journey she is truly the kind and gentle soul that she appears to be. Amongst some tears we were able to come up with a "typical" answer like holding grudges. She never really does, but we related it to her normal teen sister. She with tears rolling down her face changed a few of the answers. We do not want the implant, but she has got to get some type of life going. Who knows, we may still get healed, but I just want to cover all basis and have all paper work finished just in case.

I hope you are all doing well. We haven't heard much on the board. I would love to hear from Brandon. Leesa your day is coming up. I am sending you positive thoughts, that this surgery lessons your pain.

LindaV, sorry about your continuing pain. David , Donna and Leesa are all away right and they are the ones who had surgery awhile back. Brandon hasn' posted for awhile. Margie is doing great and she had surgery with Dr. Barbaro in San Francisco. And we haven't heard from our Julie who had surgery awile ago. I am now shheduled for surgery on 26th, just got my date settled yesterday. So maybe I can be of some help to you later.

Menzie, I just don't understand why in this day and time someone has to go on and on suffering from pain as your D has, but as we know pain has not been given much thought until recently and it will take years to get the needed research done. I just feel so much for her and you wiht her so young.

Linda I wish your husband would be more supportive. That is too bad. Most of the spouses and boyfriends have been very supportive. Would getting some counselling or talking to your doctor together help? Don't give up. There are a number of doctors who do this kind of surgery.

My desktop computer crashed Monday and I am not as good at typing on my laptop. Gotta go now.

Shirley.

Hello Linda and Denise,
Linda, please get on the internet and look up Dr. Aaron Filler and Dr. Barbaro and the doctor Denise used. There is hope, so please don't suffer any longer than need be. I suffered four years before a diagnoses and had surgery with Dr. Filler in Dec 07. I did not feel better at all until 7 months post op so as you can see it was just recently. My sciatica has really calmed down but I must be careful or it does flare up. I do feel tho that I am finally getting some benefit from the surgery. Please tell your husband, what about the better or worse vow he took, what if it were him instead. It is very wearing on our spouses, mine suffered along with me for years and took on extra housework, cried with me etc. I understand what you mean that his attitude makes the whole thing worse. Please have a talk with him, you must work as a team to get thru this!!!!

Denise, so glad you had the surgery. Only about 6 weeks out and you can swim? Thats so wonderful! This takes time as nerves heal slowly. Sounds like your nerve damage was not extensive since pain did not go down to foot so you may recover faster. Great about the cost for you. Unfortunately Dr. Filler does not participate with insurance so he is more expensive. Frankly he sounded as tho he was very qualified and I felt cost was secondary to expertise and experience I also wasn't aware of Dr. Barbaro in San Fran or I may have had a second opinion. Whatever, its done now and I pray I continue to improve. People on this site know of my many ups and downs and the support was a blessing to me. I would give all my money to be free of this monster!!!!! please keep us updated on your recovery and anything that is beneficial as we are all looking for as much help as possible.

Brandon, Julie, where are you?/ How are You????

Aztec, I developed SI problems after the surgery, or maybe it was there and the sciatic pain was so much I didn't feel it as much, anyway, I have had a chiropractor I sometimes go to who uses only a device called an activator, adjust it and my low back. After 4 visits the pain was significantly better. No twisting or cracking, just this handheld activator device. It was amazing. I hate chirpractors as thats what started my nightmare, but this device is really safe and has helped me and I trust her. You might want to try it, call around as this device is used extensively by them now.

David, please be sure to let us know if you go back to see Dr. Filler and what he says and does. Hope the hurricane missed you. We were almost wiped out by Iniki in 1992. The eye enveloped the island entirely, winds of 220 mph clocked. I've been thru 2 so far. Hope you had a great vacation.

Menzie, Do you mean an implant with pain meds in a pump for your D ??? Have you spoken to Filler about it? What does he say about her status???

Shirley, a surgery date, lordy, I can't believe it!!! Write me girlfriend.

Margie, thanks.....


Gods blessings on you all, you are in my prayers, your friend Lynne

Lynne,
thank you for your support and encouraging words. I keep thinking I should be much better than I am for 6 weeks. But hearing that yours got even better after 7 months, that helps. God Bless you too.
Denise

Hi All. I m back from vacation and gearing up for my back surgery in 2 weeks. This better be the fix. Not sure what I ll do if it isn t the solution. Guess I ll try to stay in the moment on that one and try not to freak out before it s even done.

Lynne: It was great to come back and catch up on the forum and find that you are still feeling better. Good, good news. Hoping it continues for you.

Shirley: I m still wondering if you REALLY have a surgery date!!!?? You have been such an amazing support to everyone on this forum for nearly a year or has it been longer? Anyway, we will be here for you to remind you that it takes a while to recover and not to get discouraged along the way. I m hoping you feel mentally better now that you have a date set.

Denise: Very good to hear from you. Time is key. Seems like some feel better sooner than others. It s really, really hard to wait it out because we ve been in pain for so long we just want to have surgery and feel better right away. The people on this forum are great and will be here for you. We completely understand.

LindaV: I had surgery Jan 29th of this year with Dr. Filler. I posted pretty detailed updates along the way after my surgery if you have the time to search through this forum and read back. Many other surgery people have done the same thing. I d say the most consistent thing is that it takes nerves a very long time to heal and it s not a quick fix. I hesitate to comment lately on how I am now because I now have a herniated disc. Hard to know how much of the pain I m having is attributed to the disc or continued PS recovery. I m sorry you are having so much pain. I know how hard it is to face each day but don t give up. Keep us posted on how you are doing and what you decide to do.

Menzie: Urgh. What a nightmare you and your D are going through. I m glad to hear you are not giving up and continuing to search for answers. I just know something will work for your D. Thanks for remembering and your well wishes on my next surgery.

Aztec: I don t know anything about RF but maybe Donna can shed some light on how it worked for her. Hang in there.

David: Did you survive the storm? How are you feeling?

Margie: Hoping you were able to find a way to swim without too much pain. I too hope the combo of PS and back surgery is the fix, like you think it was for you.

Ok, I guess I better get to work!

Leesa

Hi everyone,

I feel like my pain is getting better slowly but truly. I hardly notice a difference day to day but I am able to sit up and stand for longer periods of time. However, there are other times when I can't sit up for very long. I am taking around 3 to 4 Norco painkillers a day and when I do take the medicine it gives me more pain relief than before surgery. I was taking around 8 Norco a day and I was in around 20-25 percent more pain than I am now. So my pain is getting better and I am trying to be patient with hope that I will be able to go to college this Fall and perform well.

Lessa: I really hope your back surgery goes well. I have had two of them and the recovery from surgical pain is very fast.

Lynne: You are an inspiration for everyone. Getting pain relief after 7 months from surgery really shows that nerves do take a long time to heal.

Menzie: What kind of implant are you talking about. A spinal stimulator implant or a pain pump? From what I have been told, I really hope it is the former. I hope you D gets to swim a lot this summer.

LindaV: Welcome to the forum. I have had exactly the same problem as you. Because of my sciatic pain down my right side, I haven't been able to sit up for very long. However, I am six weeks post-op with Dr. Filler and my pain is at least 20 percent less. I can sit up for longer periods and standing is more bearable. Hopefully I will be able to give you a clear recommendation to have surgery in a few months. Are you taking pain meds for your pain?

Shirley: I am so happy you are finally getting surgery. I will definitely be there to support you through your recovery. If your recovery is like mine, then you will need a lot of encouragement. I wish you the best.

Denise: Keeping on waiting patiently. Anything can happen in a few months. I wonder why most people don't have surgery on the other side too.

David: I hope you missed that hurricane.

I will catch up with everyone else later. My computer is overheating and I am dripping in sweat. It is expected to get up to 100 degrees here and I live in an upstairs apartment with no air conditioning.

Take care,

Brandon

Hi everyone. Welcome home Leesa. We are all thinking about you as 28th approaches. Hopefully you will be like Margie who has had both surgeries and is doing just great. That will make 4 on the forum who have nhad back and piriformis/pelvic nerve surgery if we include Menzie's D and Brandon.

Brandon, so glad to hear you are doing better and progress is being made. We miss you when you haven't posted for awhile so keep in touch.Your progress sounds pretty much like everyone elses,slow with ups and downs but progressing. I am so glad I am on this forum so I won't have too high expectations regarding recovery or as Dr. Filler calls it healing.

I questioned him once abut his website on piriformis where he said recovery takes just a day or 2. He told me what he meant was being able to get up and walk unassisted. Healing takes longer he told me. So if I had just accepted what he said on his website I would have expected to have jumped out of bed, run out of the hospital in my gown shouting "I'm recovered, I'm recovered", gotten on the plane and upon arriving home planned my next cycling trip, my next walking tour in Europe, my next hike to the top of whatever, my next pilates class , my daily 1 hour walks at a very brisk pace, and sitting at the computer for hours to let all my forum friends know I 'recovered in 2 days"--oh, but wait, I wouldn't know you would I??? And this is just fantasy based on Dr. Filler's website stating recovery takes a couple of days. By the way, has anyone had just a local??Oh well, we can dream, can't we? So thanks to David, Leesa, Preacherman, Candy, and especially Lynne who really made us aware that healing can take a long, long time and to Brandon who is in the process. I won't say that Donna or Margie took long but have both stuck with everyone of us and been great supporters. Their recoveries were quicker for whatever reason. And we all wonder about Julie still and if she is still reading this I want her to know we all still think about her. I probably missed someone but can't think now.

I leave Kingston on the 24th and have surgery on the 26th. Then Ihave to wait until Monday to have the incision checked. My friendJanet is coming with me. I will be having surgery in St. John's Hospital which is in Santa Monica. They are charging me $13,050 instead of $50,000 which Cedars Sinai would have charged me. Wow, what a difference and what a relief for me. I told Dr. Filler that I may have to die early because I had run out of money if I paid C.S. His surgical center is not yet ready so I can't tell everyone whrer I would spend the night if I had it done there.Just remember, anyone who is thinking of surgery and has to pay that St. John's or his surgical center will be options in the future and will charge much less than C.S.

Lynne, you have been such an inspiration to all of us as well as a wonderful support to everyone and you always know just what to say to encourage everyone. Thanks for sharing your long journey and for coming back on the forum. So don't go away.

Thanks, Leesa and Brandon for your thoughts and kind words. I will be thinking about you Leesa on the 28th and wishing that you would be able to jump out of the hospital bed and run down the freeway shouting you are recovered and you know what else--a little joke between me and Leesa who if you remember I met in L.A. and she came to my rescue when I feared driving on the L.A. freeway. Incidentally she was only 3 weeks post surgery from her P.S. surgery when she drove us so she May have had a quicker recovery than she later thought since she subsequently nhad this disc problem.

I never post such long winded messages so I must be wound up about my finally taking the plunge for surgery. It only took me a year to decide.Never let it be said I took tis surgery lightly.

OK enoughs enough, Shirley. I will close and keep everyone posted about my upcoming surgery but meanwhile we have to think about Leesa.

By the way, Menzie, I wasn't sure what implant you were referring to either.

Bye for now.

Shirley

Don't feel like editing

Shirley, I loved all the things you wrote you would do if you were recovered in two days. I had a big smile on my face. Thanks to all of you who kindly remember me in your responses. You are my friends and I totally appreciate you. The implant if there were to be one, is the spinal stimulator. We have not wanted this, and have really tried every modality except for this. We are just lining up everything in case that is what we have got to try. It is not something I want for my D, and I have fought it with my heels in the ground for almost 2 years, yet my D will be 22 at the end of September. It will mark 2 years on this journey. She deserves to have at least some chance at life. She can not sit, not even for a few minutes.

Our whole family has been ravaged by the pain beast. My daughter seriously is so good, that she even flunked the psychological part of the assessment for the implant. :? It would not give a score because apparently no one is that good. Bingo, when we were reassessing her I asked the Dr. if she missed all the goodness questions? The Dr. looked right at me and said yes, I said well, I do not know what her answers were but honestly she is that good. However, we did convince her to change some answers, we just told her to think about her 18 year old sister. Bingo, she passed, or at least I think she did. She was a runner with an atheletes body, now she has a couch body. She had a ready smile for all to see, she has always meant the world to me. :) Ha ha I made a Rhyme.

I do not think we will persue the implant for a few more months, somewhere I have this crazy idea that my D can and will be well.

Shirley, is your surgery this month? I think you should tell Dr. Filler that when he is operating he should talk to you and your body as he performs the operation. I think you should tell him he must tell your body that he is performing this surgery to release you from this pain and that surgery is a good thing. He should tell it continually, that it is now time to release you allow you to heal quickly and permanently. Same to Leesa as well. It is a bit quirky I know, but I still think you should tell him. I will pray for you both. Thanks for being there for all of us.