Much love to you and D
Well, as you know, I have begun working out. Four times last week(yippee). Saturday was NOT a real stellar day. Not horrible, but not stellar either. Pretty severe burning in my feet and my butt hurt, both cheeks. Kind of got my attention pain. Oh well, I rested Saturday and it improved and I worked in the yard the first half of Sunday then took the pup to several different parks and the bay. Nothing grossly strenuous and woke this morning(monday) much better. I think I yanked on my hamstring a bit in the Friday workout and it lit me up.
Seems like any time I stretch or tweak the hamstrings, I pay a fairly dear price. Don't understand it but Dr. Filler told me he didn't want me stretching them for another 3-4 months. They really want to be stretched but I don't dare. Went and did another workout today. We'll see if a pattern develops. I am prepared to give up rigorous workouts if all they do is irritate my nerves. I'd be satisfied at this point to simply be able to walk, work, garden and travel if I have no pain. I'm nearly 50 so I probably don't need to be trying to keep up with 20 year olds anyway.
Getting old is not for wimps.
For crying out loud, enough about me.
Julie, setting the date is wonderful news. I would really wonder if you weren't nervous. It's one of those things that you just head long into and don't look back. Heck, I know you know that. We'll count down with you , support you all the way, and be here when you get back. Count on it.
Leesa, I'm sorry to hear that. Wish I could say more. Hang in there and keep the chin up. Just so you know, my early steroids didn't do a dang thing. The one at nearly 3 months did. I have no explanation for that whatsoever so I'll spare you any speculation.
Menzie, I think that's pretty good news but it's still early. If she's anything like me, strap in because it will be one heck of a roller-coaster but it is supposed to trend up. Admittedly, it sometimes doesn't feel that way. We're here when you need to vent.
Forgive me if I missed someone.
Mark, remember that Julie gotnegative results on everything except the MR Neurography so you may not still hve the full picture. I gather your imaging was not MRN.
Leesa 4 months is not too far away but I know it seems like an eternity.
Ronesa so nice to know your name and thanks for keeping us balanced.
David 50 is young by my standards--really young. You can't feel old yet ,
Margie you seem to be well on your way
Aztec, I hear so much about SI joints. Mine hasn't been mentioned since I had prolotherapy which Dr. Ko claims fixed my loose SI joint. I noticed nothing.
I have a call from Dr. Filler tomorrow because I have now passed the 4 weeks since my injection. My butt pain has not let up. My leg pain has had ups and downs. Cece seems to think he may suggest surgery. Don't knowif I am ready for this decision even though tis is what I initially went to Filler for. Since i first came on I have watched some get better wiht little struggle, some get better with lots of struggle, some not get betteryet so I don't know what the outcome will be. Donna, you were the first and you made it look so simple. The botox still may have more of an effect than it has so far so maybe I will bide my time a little. I'll see what he says tomorrow.
Bye for now.
Also, Menzie keep us posted.
She has said that her leg at times does feel better, but the Freddy Cruger butt pain is still there, but I think that too has at times felt better. Today CiCi called again to check on D's pink cheek :) I am glad the calls are coming. It makes me feel better. Alot better! At this point, I am glad we made the trip, I am cautiously optimistic, and dream of a day when I remember what it was like to live normally. If we survive this, any bad day that may present itself, I will be so glad. No bad day can compare to what my D and many of you have experienced. As I have said before I belive you are all warriors.
We haven't corresponded but I hope you'll take this comment as support for you and your poor daughter. I have a daughter that age.
In my long 20-year battle against PS I found that a warm therapy pool was a huge help. Very gentle, slow rehabilitation in warm water/low gravity has been a huge win for me. For a young girls it's hard to slow down, but with your daughter's history of problems, she has to slow down and give her poor abused pelvic muscles time to relax. That whole area is in potential spasm at any time. Even without a piriformis muscle, the problem can recur from all the other muscles...they will all spasm in synch just because of all the inflammation. So give this lots of time.
You have taken a huge step with this surgery, so don't go risking everything by being too aggressive. Don't immediately jump out there and insist on climbing mountains. Walk in the therapy pool and that gets fantastic blood flow without the strain. Never, ever sit down...keep using that pad in the back of the van. Give her a divan and let her lie down at the dinner table (no, really). Give it 12 months and slow exercise and her pelvic region might just get finally settled.
I also learned to avoid most physical therapists and "experts" --- they are all far too aggressive and try to rush this process. They don't understand chronic pelvis syndromes. Even surgeons like Dr. Filler tend to want quick fixes, which more often than not, backfires.
Piriformis pain is hell on earth as you know. I endured it for so long but can't even imagine a young girl having it. So this is the best advice I have. God bless you.
Menzie, I was nervous about the strips too. I think I kept mine on for 3 weeks.
Butt Warrior! We need t-shirts. Okay, maybe labeled diapers. I'm in.
Have a great day everyone.
I don't have time to write each of you, but Menzie, glad to hear your daughter is doing well. Hope her recovery goes well. Julie, I know you're relieved to have a date set. Shirley, I understand your hesitation on the surgery decision. Hard to know how each person will react. David, you can't be old, since we are about the same age and I refuse to think of my self that way...on most days anyway!
I'll check in and see how everyone is doing when I get back. Hope you all have a good week...taking it slow and keeping a positive outlook.
Menzie: I just let the strips fall off naturally because I was nervous about pulling them off. Actually, they told me to just let them fall of on their own. Glad you are getting attention from Filler s office.
David: I COMPLETELY understand your want to work out as you did before. I hope you are able to in the future. Maybe it s just too soon to push it. I too want to stretch but as you said I wouldn t dare either. Walking a block or two is still too much for me at this point which is so difficult to swallow.
Shirley: Keep us posted. It is a tough decision. You just need to do what you feel is right for you. I know it s hard to know what is right but we re here to support whichever way you go.
Wonder if Butt Warrior I survived Piriformis Syndrome is too wordy for a tattoo? :D
I m going to try this again but this time I m doing it in a Word document so I can copy and paste in case it gets lost again. I haven t been on for awhile so this will be a long one.
Donna, sorry to hear the SI pain has returned but very pleased to hear how great your PM doc is. You re very fortunate in that I m somewhat envious! You are always supportive and your compassion comes thru in your posts. Thanks
Margie, seems you re making progress with the staples removed. Pleased to hear that the RF went well and gave you some pain free moments. Sorry to hear about the spasms but it sounds like the same thing David experiences so hang in there, ladybug.
Leesa, what do you attribute the increase in pain to? If I remember right, you were progressing and back to work but taking it slow. Here again, you re not at the 4 month mark yet if my memory serves me right. It s frustrating I m sure but it will get better. I like the title of "Butt Warriors" and would consider a tatoo even though I don't like them (former derm nurse). Also, what about Feldene instead of Skelaxin? They're both muscle relaxers and I'm pretty sure Feldene is available in the generic.
Menzie, I was so happy to here that the trip to Calif and back went without any difficulties. It sounds like she had a lot of work done which explains why she was in so much pain. She s very fortunate to have a mother that takes such good care of her and supports her physically and emotionally. Just remember to take care of the caregiver you!
David, I know you ve had some ups and downs but just being able to workout a little is significant progress. Oh, and 50 is not old I m 53. However, I feel like 70 with this PS so I can relate. We all are impatient and just want to get back to our active lives.
Kym in Hawaii, sorry to hear about the flare. Since it s been 6 months since your surgery and you were doing fairly well, if I remember, what do you think caused this flare? Perhaps it s just letting you know that it s going to take a few more months to be completely healed. Insurance is very frustrating and I feel your pain and frustration fighting the appeals but keep at it. I ve worked as a case manager for three different insurance companies and have found that appeals are generally overturned if you re persistent unless your policy flatly says it s not a covered benefit. I did some online research and found the BC/BS policy regarding MRN. They do consider it experimental. I didn t have a chance to find out what the other insurance carriers stance is. I have BC/BS also, so I guess I ll be paying out of pocket as well. Oh, and yes the best position is on the unaffected side with ice on the affected hip/buttock.
Mark, I have the Teeters HangUp Inversion Table one of the best. It felt good on my low back but I blame it for the pinched cervical nerve that persisted for months. Now it s a good coat hanger. Everybody s different. If I didn t have degenerative disk disease in the spine, it would probably be very helpful.
David, who s been writing the hydrocodone back home or has Filler just been mailing the script to you? Have you had any trouble with that? I m in a situation where no one believes in PS so they re very, very reluctant or just won t write for any narcotics for the PS pain.
Ronesa, is the $10,500 PS surgical fee because Filler is out-of-network? Did you have any problem with insurance saying the PS release is experimental? Sorry to hear about the recommendation for ischial tuberosity surgery. Keep me posted on that if you have it done, please.
Julie, I apologize for not getting back to you any sooner. It was great to hear you FINALLY GOT A DIAGNOSIS! Yippeeeee!!! I agree that it sounds morbid to say that but it does wonders for your psyche to know you re not crazy like all the docs think you are. You re the pioneer with Barbaro so any info is welcomed i.e. hotels, transportation, etc. Your surgery date is right around the corner and will be here before you know it.
I guess it s a good thing that yesterday s post was lost because I was very angry and frustrated at the time. I was told by the PM that I wouldn t be a good candidate for the spinal cord stimulator (SCS) because I m depressed. Expletive who wouldn t be after this type of pain 24/7 for 4 yrs??????? Duh. Even the psych who has been treating the pain with gabapentin and Cymbalta has written a letter saying the pain is what s causing the depression but PM doc wouldn t hear of it. My pulse was also up, 133, so he wouldn t do it or anything else on me until that comes down. It s been running high for the last 3 yrs and has been checked out by cardio without any findings. I think it was due to pain and anger. Funny how the previous day I saw the endocrinologist and it was 88. Here again, when I said it was due to the pain, he just shook his head no. He s adamantly against using any pain pills, narcotics. I told him about the decision to go to Calif for tx and that didn t sit well either. He just said, Well, I ll see you after that I guess. I should ve just gone to my ortho and had him order the facet injections and RF since that s all he did in the last 5 months. Thanks for letting me vent. Your support has been so helpful. Margie, I understand the rope bit because you wonder just how many more days/months/years one can tolerate this. I m just like you I want my life back. I want to be "normal."
Oh, and today was not a good day. My D is hurting, not feeling well and she feels hot. She was put on medral pack, not sure what for, but hoping the ickiness is from the meds. Good night it is now 11:11 pm :)
I hope you get it figured out. Menzie
The surgeons cost $10,050 was the cost that Dr. Filler charged himself; since he was out of pocket, and the surgery was 'experimental,' the insurance (BC/BS) paid only about $1,500. They refused to pay any of the injection costs (even though the injections are covered at the pain clinic). If you choose to come to California for diagnosis and treatment, remember that you're still going to want a doctor support system at home. My experience with orthos is that they don't believe in PS. The pain clinic and my primary care believed the pain was real, regardless of the cause.
Aztec, all ithe injections I was given made things worse for the first 36 hours or so, then the meds start to kick in (especially steroids). Also, everyone taking oral steroids, be careful not to take too many 'cause they can cause bone loss, which is difficult to reverse. (They also seem to be a temporary fix, decreasing the inflammation; when you're in that much pain anything helps.
Has anyone heard from Hawaii Girl? Hope she's doing better;
Washingt all of you recovering from surgery a swift course to painfree living ...