Piriformis release surgery, discussion and information

Hello,

Some of you may remember me, I was following the forum last Oct. and was being evaluated for piriformis syndrome by Dr. Barbaro just a step behind Margie. In Feb. after the gamet of scans and injections, Dr. Barbaro's opinion changed and he did not believe my problem was being caused by PS and he suggested trigger point therapy. As with all of you, I could write a book regarding the medical maze of my last 3 years....but I'll get to my point.

On each scan I'd ever had it was mentioned that I had a tarlov cyst at S2. Each and every medical professional I saw told me they are asymptomatic and it was not my probelm. Like your daughter, Menzie, my last alternative was a spinal stimulator and I just knew it wasn't my answer. I did my own research regarding the tarlov cyst, connected with Dr. Frank Feigenbuam in Kansas City, had surgery June 19th and am a world better!!

I share this because the symptoms for piriformis syndrome and tarlov cysts are almost identical. The cyst is actually the wall of the nerve root that has filled with spinal fluid and compresses the sciatic nerve just like piriformis syndrome. If I can possibly save someone else some struggles, please read your MRI reports, look at the scan itself. Mine was blantanly obvious. In Kansas City, Dr. F. showed me the scan, bone erosion and nerve compression! As hard as I try, I cannot comprehend why the vast majority of the medical community are blind to this diagnosis.

For those of you who have had surgery and are improving, I'm thrilled for you. I wish you all relief from pain and the patience to get through it.

Go Beavs!! I have 3 OSU graduates and will have one more this spring.

Take care, patty in Oregon (aka Sadie)

A friend of mine just told me about RIT and swears that it helped her friend's back problems. I'd never heard of it, and it's probably just another one of those "too good to be true" scams, but just in case... Anyone out there heard of it and explored this to help with their piriformis syndrome?

Leesa, so wonderful to hear about your progress. I have to say I am very jealous, but I am truly so happy for you. I hope you continue on with your super recovery. You are probably doing so well, because you remembered to tell Dr. Filler to talk to your body, Right. LOL. A big cheer for LEESA. :D :D :D

Jo, my D did have fusion from her L4-S1, on June 19. Was making a good recovery and then 3 months later, BOOM!!! Little did we know that the lives and family that we once had, was to quickly change to something we could have never imagined. My D was doing so well, then this leg, ankle, and Freddy krugger up the butt crack arrived. We have tried so many things. We would drive our d for pt to Eugene, OR, every week for a year, one hour from where we live each way. Her life has been on the couch. Tonight we are going out to dinner for our youngest because she is going to UofO, and will be moving tomorrow. Although, I am happy for her, I have great sadness in the fact that my oldest should be done with college. But it appears her younger sister may catch up to her or even pass her.

We had the screw removed because I had always felt the screws were not ok, don't really know why I thought this, except that one screw was possibly touching a nerve. The Dr.'s have always said that it SHOULDN'T cause her pain, but the pain was not there until she lifted a backpack with books in it. My idea my last idea was that maybe she did some type of torsion to her back that allowed the screw to protrude even more, and the mri's weren't showing it because of the artifacts that splay out from the hardware. I do not really know. Today's horoscope for her says Restrictive, crippling conditions will be alleviated through the good of another. You'll now have more freedom to pick and choose your activities and friends. Wow, how I would do anything to make this come to fruition!!!!!!!!!!!!!!!

Sadie, I too 1 1/2 years ago kept asking if it could be a tarlov cyst at the s-levels, and although she too had sac filled with fluid, you now will have me reading all the info again, and I am going to ask her neuro-surgeon on Tuesday about it. :wink:

Again, thank you to everyone who is a part of this site. You all keep me going. Someday I truly hope that there is great medical care for these conditions. A man on the moon is possible, but removing butt pain is not. Something is wrong with that picture. Have a great evening, 5:15 here, time to get ready for our dinner, as my oldest will have to stay on the couch, no one really thinks about accomodating the people who can't sit.

Hi Menzie

I read with great interest your story. I really do feel for your girl. It interests me because I too had spinal fusion but only at one level L5/S1 6 1/2 years ago.

Your daughter and I seem to have one thing in common, that we both had the screws and rods removed - that means two lots of surgeries. I was OKish post fusion but when I started to do physio, and increased activities = so stupid to get on my bike! (The physio said it would be OK!) Together with piriformis stretches, I have never been the same since. I've tried everything too and about to go for release surgery.

Piriformis problems were defined almost immediately when I went to physio. But stretching it wasn't going to make it any better because there was so much scarring involved - in fact it only made it worse. On the other hand, I think I had two pathologies right from the start.

1. Degeneration at L5/S1 level = the disc was virtually collapsed.
2. Piriformis syndrome.

It's plain to see that after surgery, the syndrome only got worse.

I will go back and read your postings Menzie but there seems to be a link here. I wish you all the blessings in this world. Maybe as a mother, you are suffering more than your daughter. Mothers hate to see this suffering and you're doing your d real proud. Keep on hanging in there Menzie because somewhere there's an answer to all this. I have the reverse here at home in the UK. My daughter has been my carer for far too long and is probably so fed up with it all but still does all she can to help and I thank my lucky stars.

Chin up - keep positive.

Jo

Sadie, aka Patty :D Thank you for taking the time to come back on this site to inform others of your ultimate correct diagnoses and subsequent surgery. I am so happy for you!!! It just goes to show how difficult these things are. I am curious and hope you will share , When Dr. Barbaro came to the conclusion you did not have Piriformis Syndrome, Why did he call for trigger point injections if he did not think a muscle was involved in nerve impingement? What did he think injections would accomplish? Did he refer you to Dr.F or did your research on the cyst lead you too him? You said the cyst was mentioned by all Docs who read the MRI, so did you just decide to investigate further after Barbaro came up with no PS? Is this Dr F a cyst removal specialist? Your story is Very interesting. Again, thanks for sharing and so happy for you.

I am now 9 months post op and am still improving, slowly ,but moving forward. Piriformis surgery side is still weaker and I get muscle spasms sometimes if I overdue things. The sciatica has settled down but the skin all along the sciatic nerve route is still sensitive or numbish in some areas. Sitting on hard surfaces or for long periods brings on some uncomfortable feelings. Right hip always feels very tight . Area at sit bone and upper thigh is the most sensitive. Lifting anything over 15 lbs is a no-no. Hopefully all of the above will continue to improve, I take only advil when needed. I only give updates to hopefully be helpful to others and keep them moving forward. It is a very long hard road and I want to provide encouragement for others. You might walk out of the hospital the day after surgery, but its a long recovery process after that.

Shirley, thinking of you and knowing how close you are to surgery am saying extra prayers for you! Glad to hear Filler finally got a new nurse, just in time for you !!! :D

Menzie, what can I say??? Just to keep your D's muscles from weakening from couch life, can she get someone to take her to a pool so she can keep swimming and stay strong? Plus that sounded like it was a real boost for her mental health as well when you wrote of it awhile back.

Aztec, good luck with the move, check in when you settle.

David, would love to hear an update, hope IKE didn't hurt your family or property.

Leesa, :D :D :D :D :D :D Whopee.......

Take care all, Lynne

Hi All, I have been very busy in the past few weeks trying to get everything organized around the surgery and would like to do a post tonight but it is very late so will promise to post just before I leave for Ca. on the 23rd. Am hoping to meet up with Leesa again. After being quiet for awhile the forum has really picked so there are lots of kposts to go over before I send mine. I promise one on the weekend.

My surgery is scheduled for the 26th as you may remember and Jo you are one week later so we should keep in touch.

Moe on the weekend. I too hope David's family was not hurt by Ike in any way. These are hard times between the price of gas, the hurricanes and the financialo markets--wow!!!!!!

OK, more on the weekend.

Shirley

Hi Shirley
Yep, that's a good idea. Please keep in touch. What kind of surgery have they planned for you?

I've looked back at some of your posts and it's quite amazing that we joined this Forum exactly the same time. We have a lot of similarities. Even for me the swimming was virtually impossible. Not much fun just floating trying to keep legs still - felt like a mermaid!! :D

Good luck for 26th Shirley - you're nearly there. Be careful with the sitting. Are you able to accept emails on this site? Sometimes it's quite difficult keeping up with all the messages and tying in names etc.

Lynne - you're making such good progress. Over the moon for you.

Have to go and replace the batteries in my keyboard. Taking ages typing this - butt is killing. Why is it we sit down when we're on a good day and spoil the progress. Ah well.. :)

I got a couple private messages that I then responded to and they are stuck in my outbox and will not go out. I wish to reply to you who sent them but I don't know why they will not send. Anyone else having trouble sending a private message?

Hi Lynne:

It usually takes FOREVER for messages to go out. Not sure why!

Leesa

Nick,


My sciatica was a constant burning feeling not a throb or a zing feeling. The bottom of my foot felt like it was on fire or I was walking on a bed of nails. The muscle in your butt you feel is probably your piriformis muscle in spasm. over stretching it will intensify the pain. Ice packs are a big help, 20 minutes at a time.it will take down the inflammation and relieve the pressure on the nerve temporarily, unfortunately. I hope you have support at home as this is a hard one. You look fine, but are in pain so others find it hard to sympathize. Keep us all updated we care.

Welcome Jo, good luck with your surgery, keep us informed as well.

Margie, been trying to private message you to see how the Pt was going but it won't go thru. Please let me know if it has been helpful.

God Bless you all, Lynne

Hello,

Lynne, I'll try to answer some of your questions.....I had a microdiscectomy in June which gave no relief. 18 months and many therapies later my local NS was pushing for a spinal stimulator. I was persistent that my problem was anatomical. He then referrred me to Dr. Barbaro, I believe mostly for a 2nd opinion regarding the stimulator. My husband and I were both surprised and thrilled when Dr. B told us he "could fix" me and my symptoms were "classic for piriformis syndrome." Over the next three months, I had the MR neurogram, sciatic notch injection and piriformis muscle injection, all of which were inconclusive for P.S.

Dr. Cynthia Chin was the Neuroradiologist who performed my CT guided injections at UCSF. She made the remark that the tarlov cyst was very close to the sciatic nerve, then it was dropped.

After Dr. Barbaro changed his opinion and told us piriformis surgery would not help me, he basically was done with me. He did suggest the spinal stimulator or maybe to try trigger point therapy if the muscles were in constant spasm. I did ask him about the tarlov cyst and he shrugged it off and told me I could have an injection at S2 for diagnostic purposes, but it could be done in my home town which is about 7 hours from San Francisco. I have great respect for Dr. B., and am thankful that he did not perform a surgery that wouldn't have helped me.

I then tried trigger point therapy without the injections. It was very painful and gave no relief. At this point I'd been on oxycontin for over 2 years and I was a wreck. My last hope was getting a fair evaluation for the cyst. Remember, all along the way, I'd been being told that tarlov cysts are asymptomatic and don't cause pain. I then began reading on several t.c. forums, I found Dr. F. Feigenbaum in Kansas City to be the most experienced neurosurgeon dealing with tarlov cysts. I sent him my MRI and he offered me surgery. I'm now 3 months post-op, and am a world better. Total recovery after t.c. surgery is 9-12 months, I feel I'm doing very well, my last oxycontin was the day after surgery! Tarlov cysts are very contraversial among the medical community, and I truly believe it's because the vast majority of neurosurgeons do not know how to treat them, so they won't acknowledge them....it's a real shame. Dr. F has changed my world and I am so very grateful.

Wishing you all good days, read your reports, do your homework, and don't give up. Thanks, patty

Hi Patty,

Thats is a wonderful story and I am so happy your are feeling better. Like many of us, you have seen multiple doctors and have been through so much suffering. I just hope other people will have the perseverance you have showed.

Can you try to contact your previous neurosurgeons that didn't feel surgery was necessary to remove the cyst. Maybe they will learn something.

Overall, I have been feeling worse lately but still maybe 15 percent better since surgery. School starts in about a week and I am waiting on an anti gravity chair to take to class. I still get uncomfortable with prolonged sitting and eventually it gets unbearable. The chair will let me lay back without all the pressure on my butt so I can concentrate on learning.

I hope everyone is doing well. The election is stressing me out. How can a guy like Sen. McCain that has voted with President Bush 90 percent of the time even be close in the polls to Sen. Obama. We need someone who will go after national health care and end poverty and create renewable energy but instead McCain wants to extend the Bush tax cuts for the wealthy and end employer based health care. We will be in a much worse situation.

Brandon,

Without experiencing it, a person really hasn't a concept of the magnitude of chronic pain.....my kids are grown and I'd been a stay-at-home mom, so my days were pretty undisciplined, you have my admiration for continuing on with your education even through your recovery.

Stay strong, and I hope better days are coming soon, patty

Go Beavs!

Well, I never got around to reading through all the posts, just scanned but just wanted to say I leave tomorrow, surgery is Friday. Leesa and I are hoping to get together provided she is feeling well enough. Brandon, good luck in school and I hope you start to get much better faster. Good to lhear from you Sadie and I will look at your post more thoroughly when I get home. Lynne, I promise to get back to you when I get home. I am so glad that you contine to be so much better. Jo, wishing you the best wiht your surgery and I'll llet everyone know know how I progress. Canick, have you decided? I can't remember. Leesa hope to see you soon and if you are too uncomfortable driving then I will figure out how to get out to see you--I mean that. And Menzie, always thinking about you and wishing something good would come your way.

Wow-- I can't believe I am doing this finally. Gotta go finish packing.

Shirley

Shirley, Remember to tell Dr. Filler to talk to your body and to tell it that what he is doing is a good thing. I truly wish you the best outcome ever. May your journey be blessed and in the end dance to your dreams. Good luck and best wishes.

My D and I are about at our end for real hope. She had a MRI on the 16th and because the hardware is out, the images were more clear. She has scarring that has clumped some nerve roots. So now who knows. I just feel in my heart if we can just find the right modality, she can be well and functional. But maybe I just refuse to see the reality that I have already lived with for the last 720 days since the onset of her being incapacitated. I kept trying and maybe what we have is exactly what we will have for the rest of our lives.

I had a daughter that was joyful and excited about life. She was an athlete who was always ready to do more. She was an outstanding student and was always kind to everyone. Good or bad she was kind. Most of all she was/is beautiful inside and out. She always liked to see the good. She had a driven spirit. She wanted to experience life and everything it had to offer. She always thought she would have big adventures. She loved water and snow sports. Honestly, the day she was born, was when I realized my dreams come true. I celebrated her birth and everyday was so very thankful for her. She gave me such joy just by her being there, that she gave me clarity and helped me focus on my long term goals.

I was a teen mother who did everything right. My husband and I made mostly good choices, not without mistakes, but choices that always put her first. As we recall her childhood in conversation she always states how much fun she always had. How our house was the fun house, where her friends always wanted to be. I was there with them all and we had many adventures. :D There is sadness in my heart because I can't fix this. :( I thank you all so much for your support in being my online friends. This is the only interactive type thing I have ever done online.

Best wishes to you all, Your friend, Menzie the bystander Butt Warrior