This is my first post to this site. I've pretty much read it since the beginning and thank everyone for sharing their stories.
I've suffered from nerve/muscle pain in my butt for 16 years and have been to more doctors, had more tests and more procedures than I can or even care to recall. And no definitive diagnosis. It hurts like bloody hell and has had a tremendous adverse impact on my quality of life.
I'm thinking doctor Filler may be an option, but I live in Florida and the thought of sitting on a plane that long (probably 1 trip for the MRN and a second for surgery) and enduring more diagnostics and surgery is not appealing. And there is no guaranty of success. I greatly admire everyone who has gone through with the surgery. That is a tough decision.
Menzie, my heart goes out to you. As bad as my pain is, I would rather have it myself than witness the effects of it on my daughter. You have done everything possible to help her and that is all you can do. Take care of yourself.
I just wanted to post to introduce myself and let those that are posting know how much I appreciate their updates as I wrestle with this decision. Thank you.
Dave
I flew out from the east coast of Canada and it is a long ktrip but I got up lots and lucked out on the trip back wiht 3 empty seats so I could stretch out. It passes faster than you may think.
Glad you decided to join the group and even if you don't decide on surgery, this is a great place to get support and share information.
Menzie, you are on my mind so much and you know I agree with Dave--I would rather it be me than my daughter. You have been a brave lady through all this and I am honored that you have chosen this group to share your feelings with.
Leesa, you are forever the supporter even when you yourself were struggling and you know what I think of you. Thanks so much for your ongoing support. I wish youcould share your Happy Halloween with everyone on the forum--I laughed and laughed which shot my pain killing endorphens way up . Thanks.
Shirley
Well, we are now into the scs trial, and I can basically already tell that it is going to be a long 10 days. My D hates the sensations that are going throughout her whole body, and it seems to change with each breath she takes. Like a little mini surge. Also they were unable to get it deep into her butt crack, so in order for any vibes in the crack her whole leg has to be buzzing/tingling/prickly all at the same time, and it still is not masking the pain. She is trying, and it is only day one, so who knows.
Thank you all for your kind words. I truly appreciate you all.
Shirley, I can say that I do think my D's leg and ankle pain are better, but it was not even until the end of May or into June that she noticed it not hurting as much. So just take it slow and do not think it hasn't worked. Remember our Hawaii girl.. :D :D However, I do know that as you are the one waiting and wondering it is just awful... You are an inspiration.
Dave-thanks for watching this site. I am sorry you are so long into this pain journey. Maybe two seat could be an option to fly to CA, especially if you can fly at an odd time and not have to pay for it. I had two seats for my D when we flew down for the neurography, but I drove her there for the surgery. Keep us posted as to what you plan on doing.
Leesa, you sound like you are doing better. :D I think you are 8 weeks out?? Are you noticing any changes?? Are you able to sit? Are you glad you had this surgery?
Jo, I hope you are doing alright. I am thinking of you and I am following up on the info you sent me prior to your surgery. Hope all is well.
Brandon, hope you are doing well at school.
Again, I thank you all for your positive messages. I have to go, but will update you all soon, it's about 8:20pm my time and I just got home from the out of town appt to the placement of the trial scs.. I was up at 4:00am. Menzie
to see how people are doing. I've had this "thing" coming up on a year now, and like many of you, have tried everything. The pain tonite is intense enough that a muscle relaxant has absolutely no effect, and sleep is impossible. The only "relief" is standing.
I try not to get discouraged, but when I read the posts of people who have had PS for years, I feel overwhelmed. Any suggestions from readers of this forum as to what they do to combat those feelings of despair?
Linda
I know what you mean. The pain can be quite depressing, especially when there is no end in sight. I think what really helps is having a very good friend or partner to open up to. Also, pets help a lot! I adopted a cat about a year into my sciatic pain and I have been very grateful. There is something about thinking about another being that takes the mind off of pain.
Menzie: I really hope the spinal stimulator works for your D. You guys have been through so much. My best wishes are with you.
Brandon
Has anyone found a pain reliever that works? Ibuprofen, tramadol, muscle relaxants don't seem to do anything. The Vicodin type pills make me sick to my stomach.
Linda
Menzie:
I am much, much better. Thanks for asking. I am very glad I had the surgery (s). I am almost 8 weeks out since the back surgery and almost 9 months since PS surgery (wow, doesn't seem like that long ago). I can sit and walk and am back to working. I am having some tailbone pain which is new since the back surgery but it isn't too bad. I feel like a new person. I hope your D has success with the stimulator, sounds like it's a challenge.
Dave and Linda: This is a tough road. I hope you both find relief soon. Linda, I never found anything that really helped with pain. I agree with Brandon, it's good to have someone to talk to about it. It's hard for people who don't really understand what you're going through which is why this site is so good. We ALL know exactly how you feel so keep in touch.
Leesa
Hey, Shirley
You seem to have kick started this chatter again. You are NOT on your own as you well know. I have sent you a private message after being at the laptop for ages yesterday and the day before just sifting and going back reading over many many postings. I am really sorry about your stubborn pain, but you know that after racing around the block 3 times and feeling pretty damned pleased with myself last week, I then fell a cropper and am kicking myself for being such as smarty pants.
For those of you out there who have already gone down the path of surgery, how many times did you post on this forum TO TAKE IT EASY. I read Johnnyrotten's message (he or she is a physioo) somewhere between pages 18 and 30 I think) and it is very wise advice. If you think you can walk 30 mins then only do 15. Do only stretching when it's time to do so and remember your body is still recovering and healing from surgery. Also the brain has to learn to 'tune in' with the muscles your body hasn't been able to use in years. LET'S TAKE IT REAL EASY.
Dave from Tucson: It might be useful to you to remember that no matter what doctor or specialist you see, they are have their little favourite areas they concentrate on and it's as though they have tunnel vision. Do you understand what I'm saying? Go to a Pain Management guy and they treat you for the pain, not the source. Go to a surgeon and they'll use a knife etc. Just the way the training goes. It's a very difficult road.
Linda: Sorry to hear about your pain too. Most of us on this Forum have been to see upteen specialists, spent no end of cash on private treatment or alternative treatments. Sometimes it works, sometimes it doesn't. Many of those who used to post 18months ago have disappeared and this can only mean that they are much better and more to do in their lives now. That's the good news.
Leesa: How are you these days. Hopefully you're continuing to make progress after your surgery. Please take care and thanks for all your good wishes. I am in constant contact with Shirley which is great for both of us.
Am managing much better today after the flare up. Similar symptoms to David. Nerve pain down the back of the leg especially back of the knee and like Shirley, shin tingles. It will, no doubt be under control if I stop pacing it out and trying to get out of the bath. What a stupid thing to do, but I haven't actually had a bath in years and was sooooo looking forward to it. OK getting in but then had trouble getting out. Well wouldn't you with a 4" incision in your butt. Keep posting everyone.
Linda, I don't know what to suggest to you about pain relief either. No lmeds have given me complete relief and I am on strong meds. When it is very bad as it was last Sat. night they don't even touch it. With moderate pain I think it changes my perception so it lt seems more manageable. The technique I have found the most helpful is mindfulness meditation. I do the body scans and I think it helps me to relax and not tighten so much around the pain and it does help. Even the mind set it puts you in is helpful. It definitely helps me keep from despairing because I know it is a technique I can go to when I am feeling really down and somehow it helps you put things into perspective. I use a TENS and that is also very helpful. I can't imagine being without one. If you have a physio, he/she could try you on one to see if it helps. Mine is a life saver and I don't know what I would do without it. We all know jsut how bad ths pain can be and it does help to pur it out with others who understand such as those of us on the forum.
Jo, hope you are doing better since that long walk. I have been so afraid to walk since Sat. whenI set off that excruating pain--never had pain that bad. But today I started over and like you said< Jo, I did less than I thought I could do, only 3 minutes and I will do one more today. I always overstep my bounds befoere I can find a good starting and I think it depends on the day.My pain remains the same and Jo, it isn't tingling in my shin, it is shear, burning, very aggravating pain.
Leesa, I am so, so glad to see your well deserved progress. You have been on the forum as long as Ihave and outlasted some of the others like Donna and David and it may be that we will see less and less of you on the forum which will mean that you are much better and getting on with your life but I won't let you get away from me as you know. But your journey is recorded on the forum to be of help to all lthat follow. Thanks.
Brandon, really hope you are managing in school. Do you have a full load? Is it getting any better. At one point you said 15%. Is that still the case. I imagine it changes from day to day. I have one of those antigravity chairs too.
Menzie, I know how hard it was for you and your D to accept the scs. Has anyone ever given a theory on what causes that pain in her crack>? I can't remember if you have already told us. I just keep hoping that something will give her relief. Sometimes, like Brandon, I get angry that we are still so outdated in terms of pain relief. Of course getting at the source is best but if they can't get it then something to give back some form of good quality of life. Pain has not been very recognized except in cancer. It's a shame!!
Gotta go --been sitting too long AGAIN!!
Shirley
Not going to edit so this is it
Just wondered if you got in touch with anyone at Iowa University about the trials? I got a reply from Dr Delanian today. She tells me that as far as epidural fibrosis is concerned, she isn't aware of anyone else doing any trials. At the moment, the USA is concentrating on trials on radiation induced fibrosis, but as you will be aware by reading the reports I sent you, this has already progressed in Paris and also been reported in the British journals here.
I am really keeping my fingers crossed for the spinal c s that your d is about to get. Only time will tell, but pray that it gives her some relief. My heart goes out to both of you.
Lynda: Have you tried Lyrica? It's similar to Gabapentin.
Sorry Shirley, I obviously didn't remember correctly about the burning pain in the shin area. Thanks for your account of using meditation. Relaxation goes a long way in controlling our muscles - good tip.
Good night all. Jo
Jo
The trial is not going very well. She hates it. It rumbles from below her rib cage all the way to her toes and into both legs. She would only like it in the pain area, not half her body. Also everytime she turns her head or takes a deep breath, the sensations intensify like a stinging jolt. The trial itself is not that big of an ordeal as I had originally thought. But it is a major deal for an internal implant. If they could zero in on the crack area, this might of been an option. Although this is exactly what I did not want to do, and the fact that what do we do now that this is not an option? My D would like it out now, but I have explained that we are this far, let's just finish the full amount of time, 10 days, because the body may be willing to relax and accept it. :? I do not know.......
I am following up, and will be sending my D's stuff to Iowa, and her neuro is trying to make contact as well. Jo, thank you for the info. You have given us another option(hope) to look at, and without you, I would not have ever known about this option. Thank you for the time you have given to me.
I hope you are all having a wonderful Thursday, and take it easy. My D started to notice that her leg and ankle area felt better around the 100day mark. :)
Menzie
Thanks for the update about the spinal cord stimulator. You're d is so very very brave. You must leave no stone unturned. Please let me know if you get any feedback from Iowa Uni. There are doing so many trials there, I just wish they'd get your d onto the one that despite my ps surgery, I'm still continuing. Because my MRI also identified epidural fibrosis, Dr Delanian in Paris, suggested that I suspend the meds for a week prior to and post surgery so I'm still taking the Vitamin E and Pentoxifylline. I'll do that for another 6 months and give feedback or even get over to gay Paris. I wonder if you doctor could liaise with her if Iowa come up with nothing? I don't know how this would work out at a distance, but it's worth a try. ANYTHING IS WORTH A TRY! Goodness only knows how many specialists I have seen in the past 7 years. I haven't got enough fingers to count on!
Keep at it and my prayers and thoughts go out to you.
Linda: Have you got a definite diagnosis? If not, don't waste any time. I am so glad I had surgery but then I was at the end of the road and had run out of options. On the other hand I did think hard and rather too long about it.
Just for an update: I had the community Physio out today who was very interested in the case. I told her about this fab Forum - she had never heard of anything like it before! Yeah, we all know how difficult ps etc. is to get to the bottom of (excuse the pun). Will be doing some very light stretches, some clam exercise and a bit of flossing (not the teeth). This morning managed to walk for 30 mins. Went in the car the other day for a little journey of about 20 mins there. On the return journey I had to keel over to my right side as it was pulling a bit but I am sure this surgery is working. Walking uphill sore pulls on the glutes. The physio was quite sympathetic. It'll take time to get the other obturator muscles trained but I think I'm on the way. Only had a couple of Tyenol (I think that's what Paracetamol is called over the pond)! Haven't been for a lie down today and the day is getting on so I'd better give myself a little break now. Off for a glass of wine!
Jo
He then said maybe we should do the trial in a retrograde method. I asked what does that mean exactly. He explained that it would focus on the sacral and pelvic areas. HELLO :evil: I said shouldn't that have been the first route? He said no, because most people respond to the leads being placed aroundT9 or something like that. I explained that there is nothing that is typical about my d's situation. My D was none the less, heck no, I do not want to do anything else right now. I wish he would have done it the sacral way in the first place.
Jo, I am following up, but am trying to get my D to learn how to swallow pills. :( She can only swallow the oxy (they are tiny) because she puts it in already chewed crackers. The rest she crushes. I have explained that she has got to beable to swollow the oblong pill in order to go forth with the p meds. She is trying.
I hope both you and Shirley are still doing better and are on the mend.
Lessa, I hope you are as great as you were on your last post. Brandon, keep up the hard work in your studies. I hope you are all doing well.
Menzie :)
Menzie, sorry about your D and the scs. Too bad they didn't do it the way you suggested in the first place and now she is so fed up she doesn't want to do it again. Must be hard on you. What are the large pills that are so hard for her to take. My daughter is the same way when it comes to pills or vitamins.
I am still having trouble wiht post surgery pain. I am a little better but still can't walk steadily. I can go out for short jperiods and do errands for about half hour which is better than I could do 2 weeks ago so I lguess I would say that is progress but it is very slow. I still have pain daily and also spasming if I overdo.
I talked to Dr. Filler this past week and asked him if it ws normal to be having this much pain at 4 weeks which is what I was then. He said that because I had had this condition for 10 years that the nerves have been irritated for a long time. He also said that I had had a large number of adhesions pressing on a number of nerves and deforming the sciatic nerve and given these 2 problems He predicted I may have a long recovery. So I am trying to be patient and am having to rely on my daughter and friends for some of my grocery shopping, etc.
I went out on Friday and was out doing errands for about an hour and a half and I paid a very big price in terms of pain. So I learned that I can't go so fast. I walk like I am 100 years old.
Today my daughter and her familly came over to help me wiht some heavy chores. I played withmy grandchildren and was on my feet for longer than I should have been without a break and again I am paying a price tonight mainly with spasming.
Brandon I hope you aremaking some progress even f slowly. I was interested in your courses. Did you know that Dr. Filler has written a book and has a theory that could change evolutionary theory. Soundsw like you are heavily into the sciences. What do you want to do ultimately? I sure hope you are able to keep up in your studies in spite of continued pain.
Jo, you and I have to keep soldiering on. You can't put on your socks and I can't walk. Hope we can both say we are able to do both in the near future. I remember David talking abot his wife putting on his socks.
Leesa is doing great which bodes well for all of us who have had surgery.
CAnick. wondering about your prolotherapy and how it went and if you are still considering surgery. I will keep you posted on my progress. But just remember that most people on the forum who have had surgery are doing better and in some cases, much better and maybe Jo and I will be able to say the same. And here's hoping Brandon will also continue with slow progress. And it can be slow but I will not give up hope. My brother-in-law who is a retired neurologist was very impressed with Dr. Filler and also my surgery report which he said looked like he had done an excellent job but he also understood why I may have a long recovery.
So that is about it. I can't sit anymore s have to go.Everyone take care. We will get there.
Shirley
US election has be glued to the TV and I may stay up all night Tuesday. I am a big Obama fan. Can't edit so put up with my mistakes.