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Hi All.I promised to post about my conversationwith Dr. Filler. We talked about what he saw on my MRN and what this means in terms of surgery. I asked him about the enlarged vein I have which deforms the scitica nerve and what kind ofrelief he had gotten in the past separating the nerve from the vein. He sais he had gotten relief for people. I went on to ask him more questions about piriformis syndrome and he sort of stopped me and said that for me and many others it isn't as simple as just piriformis syndrome because there are all these nerves involved and all the adhesions and he has to go in and clean the whole area or he won't get success. And for me there are at least 4 places including sectioning the piriformis. He sais he has learned all he can from my injections and I could either decide about surgery or wait a little longer. He said it looked to him as if I was still having lots of ups and downs . Because I felt like I couldnt decide right then and there I said wait but then he said he would call back in 2 months andwhen I hung up I realized I didn't want to wait 2 months.

I think what I want to do and will do today is say I need just a short amount of time to get my head around this and then make my decision and I am leaning toward surgry because I have tried everything else.

There are a number of worries about it but maybe I just need to set them aside. I may call today and see if I can talk tohim sooner, ask a few more qustiions about what hewilldo as I am still not clear andthen get a date forsurgery.

I am scared and a little sad, not excited like you Julie. Perhaps it is because it is more complicated for me in that I have this spine problem which could turn out to be the main source of my problem. But there are people who have what I have and have no pain so......... I could just keep going around and around.

So I will let everyone know what happens. I am sure people who have been on a long time wonder when I will ever make my miind up. I think I am about todo it.

Bye for now.

Shirley
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To all who commented -- I read your posts this morning and was so grateful I almost started crying. I have felt so alone and isolated with this "thing."
Leesa - I am so glad you are feeling better after the surgery. I am going to call Dr. Filler's office. Not sure if anyone has explained this in earlier posts, but where is the scar exactly when they operate, and how big? I have so many scars on me now I am beginning to look like Frankenstein. :)

Margie - I had not heard of a TENS unit. Is that a magnet device? A neighbor's daughter was advocating those. The ones she talked about are available thru distributors. I would buy ANYTHING if it worked.

Lynne - I am really hoping the steroid shot on the 12th works. I have had to wait for it, as believe it or not, I am also getting steroid shots for my neck - degenerative arthritis. The pain I had from the arthritis last spring was mind-numbing, and the shots (series of 3) helped greatly. But as you pointed out, you can't have too many as it's not good for the body, so I had to wait until now to focus on the piriformis. I will also try the vicodin at nite and see if that helps.

Shirley - I have found a few friends will meet me at Starbucks early in the morning, and we walk around with our coffees instead of sitting. Sometimes we meet at the mall and just walk around and around the mall. It's almost funny, in a way, but at least I get a chance to catch up with them.

Preacherman - your words were very helpful. At one point in my life I was religious, and over the years I have sort of gotten away from it. But I need that now more than ever, so thank you for your insights. My life has changed so drastically over the last 5-6 years that I've had to stop working completely, and I'm not even yet 50. I always figured I'd have trouble later on, maybe my 70s and 80s, but not now. We're never ready.

Thanks, everyone, a million times, for your words of wisdom. I am going to put all these suggestions to work. My husband and I are heading east for the summer - he is taking a work sabbatical that he has planned for, for several years. To get there, I am taking plane trips in 3 segments over several days, and hoping I can stand up as soon as the plane takes off each time.

I wish I could meet you all in person and give you a big hug.

LindaV
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LindaV,

With regard to the TENS unit. Just google "Tens Units" and all sorts of info will come up. Check with your insurance company and see if they will pay for it first. Then, if not, I would recommend that you get a good one (and there are decent ones for $100-$250) rather than getting one that only costs $30-$40. If your insurance company will pick up the tab for the unit, they should also pick up the tab for the electrodes and prep wipes. You can have the electrodes and wipes auto shipped to you once a month and they will just bill your insurance directly. Another idea you might want to try is to go to a medical supply place and rent a tens unit for a week just to see if it provides you with any relief. Hope this helps.

Take Care,

Margie

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HI ALL !!!I have seen the forum had also been quiet for a while,but now back...Which is Great!! I would like to give a BIG THANKS to Preacherman for his insight I just read..I Think That is what I REALLY Needed!! :D
I know I am Only 8weeks post op,and I have a L-O-N-G way to go..As you said Linda V. (b.t.w..Welc :D me) people,coworkers,family etc. do NOT know/understand the Pain we are in,and that is Very frustrating. Because you can't SEE anything wrong with us..But at least talking to others here DOES make me feel better mentally..I know with the warmer weather coming>>>It WAS almost 80 here yesterday,now the next 10days look 50's and drab. :( ...That I am at least getting pyched up for yard work...I should say my Hubby will.. I buy,I point where, HE digs, HE plants!!! That WILL work for me untill I can start bending more...(without hurting so much) So >>Thanks Again Preacherman!!!! I think 1 day at a time for ALL of us!!!!
:D I HOPE everyone is having a GOOD DAY!!!!
Candy
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Lynne:

You asked why an MRI and MRN. The MRI I had way back when I started with Filler was almost a year old, I guess he wants to see a new one. Not completely sure if there are other reasons. I don t much care about that since my insurance covers it. However, as for the MRN, my insurance doesn t cover it so it s big bucks out of my pocket. What I understood (and it may be wrong considering my state of mind when I saw Filler last) is that he just wants to see if anything new is going on since I hadn t improved since surgery. I agree, it seems like a little overkill getting another MRN 4 months later but I m not a doctor so what do I know? Anyway, I postponed my MRN anyway. If I continue to feel better I m not going to get it.

Today I drove a lot for work and just took a longer walk than yesterday and do feel more pain than my miracle day yesterday but still improved overall as I wouldn t have been able to take a longer walk before. So, the jury is still out.

Leesa

PS David? Are you out there?
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Lynne

Unfortunately, the myobloc injection only made my problems worse. Dont know what to think of that for sure.

I've already had steroid/marcaine injections (3) in my SI joint and left piriformis. As soon as the marcaine wore off (3-4 hours) it was back to the same old stuff.

I havent tried a TENS unit yet, but I'm willing to try anything at this point.

Thanks for asking,
Aztec
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Just wanted to post a quick update. We had my D's 6 week phone follow up with Dr. Filler yesterday. He felt that she has had a few slight changes and it is too soon to think that maybe it has not worked. Because the leg pain is still the same but different would be the change. He also did some nerve work on other nerves, one being the pudendal, she will mend slower. I have to say that I hate time. The book that Oprah did for 10 weeks talks a lot about just being and allowing. I try to be one with the moment, but honestly, I really dislike the moment and have difficulty in being thankful for this whole experience. Honoring where we are right now is just out of my range of thinking. I am so thankful for each and everyone of you. Your strength and curage to go about your daily lives is amazing. My D still has to live on the couch, as she can not sit at all, and she is trying to walk daily. To see her sit and stand still for a time, now that I can allow!!!Honor!!! Be with. :D

As the outsider watching it is one of the most hopeless positions to be in. I can watch, listen, be with, yet I truly can not help. I can get things, I can talk, I can listen, yet I just want to find the fix. I know what you all mean when you say "People say I look great." Besides a few extra pounds my D is very beautiful. She feels that she looks gross. She used to weigh about 115 and she has put on about 20 pounds or so. Outward appearances are definately a throw off. You can look angelic yet have Freddy Kruger tearing your butt and leg 24/7. If you go around the block you must be better. NOT! Our society has to learn that pain can look very deceiving. But to understand what you are all going through they would have to experience it. On December 26, 2006 a Dr. at OHSU said what our D has is worse than cancer. People with cancer either get well, or not. Our D would look great, but she would have to live in this horrible pain forever. Needless to say, we stood up and left. Luckily she was medicated, I should have been, we drove home and my intensive research started. No one should have to live with uncontrollable pain!!!! You are all some of the toughest people out there. If we can put men in space, we should be able to breakthrough the pain barrier as well. I will
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OOps sent too early. I will continue until she can live a normal life. Anything less is unacceptable. I hope you all have a great Saturday. It is just about 3:00 and we are redoing a bathroom, yuck. Menzie
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Hi Menzie:

For someone not actually experiencing the physical pain, you describe it very well. Just a little hope for you and your D......I'm around 3 and1/2 months post surgery and I'm finally feeling MUCH better. I went to a little league baseball game yesterday, then a movie, then dinner with friends and had very little pain through all of it and very little pain at the end of the day. I wouldn't have considered doing all of that in one day even a week ago. Just last Monday I saw Filler and was very upset at the possibility of having to start the process all over again because at that point I wasn t feeling much better than before surgery. So, go figure???!!

Hang tough, know that there s a HUGE possibility your D WILL recover and get her life back (and you can get yours back too).

Happy Mother s Day to you and all of the other mother s out there.

Leesa
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Leesa, fabulous, wonderful , great news. I am so happy for you.

Menzie, I agree that your last post said it all. Happy mother's day and I will keep hoping and praying for your D. You are the model of a great Mother. If you have anything to do with it, she will definitely get there.

Am off to lmy daughter;s for a mother's day dinner.

Shirley
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Wow, Thank you so much Leesa. I read your post and totally wished I could give you a great big hug. Shirley thank you too for your wonderful wishes. I appreciate you all so much. You have been a positive asset to me. A giant thank you. Your friend, Menzie
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Hello everyone,

Yes, I'm alive and well. Still fighting some pain but I'm doing so much more than ever now so I'm probably just living a bit too close to the edge.

Actually stretching my hamstrings now. Finally! I've learned that this is how to get rid of the "gross" pressure that sometimes resides in the back of my left leg. Stretching is quite uncomfortable at first and is frankly painful. Then it improves very rapidly.

In fact, almost all of my leg and foot pain is gone(98 percent gone). The pain I have now is almost totally in my rear and my hips. It is no where near agonizing but it's not comfortable either.

Oh well, I'm 1 week past 5 months and I guess I'm still improving. Not running marathons or anything remotely like that but my life is rapidly becoming normal, just a bit of a new normal.

Either Shirley or Margie said they have some questions so I'll monitor the board and be prepared to reply.

I SINCERELY hope all is well with my fellow butt warriors. Chins up and keep fighting.

Your friend,

David
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David, so glad to hear from you. I am very excited that you feel that you are doing better and able to do more normal things.

My D is 7 weeks post op. Nothing major to note. She has tried to walk each day this week. She is still hopefull that she will progress enough to someday live a normal life.

We were just notified that our insurance will be changing . So now the real scary thing (the implant) is pressing on my mind. Dr. Filler said that it was way too soon to think about. My thinking however is that I think we will get all the preliminary stuff done, so that if we hit the 4 month mark with nothing real noticable we can decide to do it and not have to wait. Do not like the fact that our state is changing our insurance. I am a teacher and our state has decided to pool all of the districts together.

Anyway, I hope you are all doing great. I am praying for our surgery girl for her Friday event. I truly hope all goes great for you and that you are blessed with some quick pain relief. Menzie
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David: Very good to hear from you :) I was hoping you were out living life! Glad you mentioned stretching. I really need to do that. I feel very stiff these days. I was NEVER a stretcher but now with this and just plain getting old, I should really do it. Julie: Are you already in SF??? Damn, I wanted to wish you well before you went. Well, good luck and let us know as soon as possible. I'm SOOOOO glad the time has come. All: I'm up and down these past couple of days. Work has really picked up which I'm sure has to do with more of my soreness - the good news is it's "soreness" not AGONY!! My leg pain is still SO much better which was the brunt of it for me so I continue to be grateful for that. I'm itching so bad to get an exercise routine going. I need to relieve work stress, etc. I promise I won't run although THAT is what I really want to do. You can't keep a girl down for this long :) Hope you're all ok. Leesa Oh, and, Menzie: insurance sucks. That's all I have to say about that!
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Julie, your date slipped up on me. Best of luck tomorrow. We will all be thinking about you. Give us an update as soon as you can.

David, we really miss you when you don't post so it was good to hear from you. I do have some questions but can't think of them right now. Will post them later. Glad you are doing pretty well. My leg pain disappears for the most part with the botox injections but my butt pain is still very bad so I hope if I have surgery it takes care of the butt and the leg and foot. I don't think it will take care of the back pain. That would probably require another surgery which I don't particularly want to have.

Hope Leesa and Lynne are still doing somewhat better.

Aztec and Candy, how are you?

And what about you, Margie?

Donna, how is kthe SI joint pain doing?

Bye for now

Shirley
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