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Menzie, how wonderful to hear from you, that you are back home , the surgery is over wiht and that your D is geting even a little relief. This must be so good for both of you. Don't get too discouraged if there are ups and downs as that seems to be the way things go post surgery for awhile--as David says just help yourdaughter keep a positive attitude and hold on to hope. From what i am hearing recovery is very individual and each person seems to reach some point where there are more good days than bad, if the surgery works. So keep us posted and know that we are all thinking of you.

Much love to you and D
Shirley
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Hi all,

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.

Your friend,

David
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Julie, it is great thst you have a date for surgery for the first side. Now you can wait with hope.

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.

Shirley

Also, Menzie keep us posted.
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Thank you to everyone for your wonderful posts. My D has her 2 week post-op with Dr. Filler tomorrow, Tuesday. I am trying to coax her to get those darn surgery strips off. She is soaking them with a wash cloth, but is very nervous to pull them off. She is sensitive to them with redness and such. I am determined that she get them off tonight. I think I will black mail her: I will watch the tv shows she wants me to, if she gets them off. As tv is her way of living a 21 year old life through the reality shows, maybe this will be highly motivating. :)

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.
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HI Menzie,

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.

Bill T.
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Shirley, I sure feel old sometimes.

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.
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Just a quick check in before I head out to the beach for the rest of the week. Attendance is required by the boss, so I have no other choice than to go and enjoy the week with my husband and co-workers. First time in 4 years that I anticipate enjoying the beach with out pain!

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.

Donna
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Butt Warrior I think tattoos are in order for all of us, perhaps in an inconspicuous place. (I can think of one good place.) Anyway, I m now taking Lyrica and Skelaxin (still on Hydrocodone and Aleve). I m a regular pharmacy over here. I had some left over Skelaxin from when I was taking it before my surgery but went to pick up the new prescription and was told it was going to be $480.00. Needless to say, I didn t get the new prescription. I m going to see if there s something else I can take because that is an insane price. I spoke to Cece yesterday and told her I really don t want to take a bunch of medication that s just going to mask my pain I just want it to be fixed. She said it s not to mask the pain, just to get me through this rough period and to the 3 or 4 or 6 month mark. Hoping this new medication helps and that the steroids kick in as well.

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
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I am furious!!!! I just spent 2 hrs, at least, composing a "book" addressing each of you and lost it when I hit submit. It logged me out without me knowing it. Sorry, but I am tired, hurting, and too frustrated to type it again. I hope everyone sleeps well and I'll talk to ya later. Debbie
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Hello Butt Warriors,

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."
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LAdyBug - Feldene is an anti-inflammatory drug. Did you mean Flexeril? From what I have heard Skelaxin works better as a muscle relaxant than Flexeril. I just wanted to clarify things, Mary
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Lady Bug, thanks for your post. I just want to say that I think it is crazy that a PM doctor would not treat the whole person. By this I mean prescribing medicine that is ethically necessary for your well being. I would be finding a new doctor, or I would be guns of blazing glory!!!! Just a figurative way of thinking on my part, but no way is it ok to not prescribe you meds if it is necessary. I hope I read your post right in that you said your ortho doc fills this need for you. My D's neuro-surgeon has really had my daughter's best care in mind, and has always prescribed her meds. He at all times was profession, but never once did he, or would he say this pain is in my D's head. We see a PM doctor per her neurosurgeon's recogmendation, but I made it clear that it better be a person who is willing to invest in my daughter and me as we are a package deal. So far so good. No one should have to endure endless pain, as piriformis basically is a living death as I see it. A robber of life. And of course you are going to be depressed. A trial run of the spinal stimulator is a must, it basically will let you know if it is going to work or not, at least most of the time. Do not stop until you find a team of doctors who will invest in you. I found Dr. Filler on my own, but I still have built a team of doctors who have been willing to invest in my child. Make sure you do this for yourself. Although a person may be a doctor they can still be uneducated!!!!! Many of my d's doctors kept telling me time would heal her because they did not have an answer and truly thought time would heal. I am cautously optimistic that Dr. Filler was able to either heal my d, or at least make her more functional. If not then the spinal stimulator is an option. It seems to me that our country needs to be made aware of the silent suffering and pain that people are in. Maybe if it were brought to their attention we could make a real change. There needs to be faces to this issue.
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
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I had my first guided myoblock yesterday. So far it has just aggravated the symptoms and made me feel tired. The post procedure literature said that it may cause flu like symptoms for several days. I realize it takes a week or so for the myoblock to do any good if it is going to. I guess the muscle is just pissed off at me for messing with it.

Aztec
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Ladybug,
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 ...
Ronesa
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Yes, Nerve Pain. I heard from Hawaii Girl a couple of weeks ago. She is not up to participating in the forum. I'm sure she would appreciate notes of support and concern either posted online or in a private message in her email box here. Mary
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