Hope your SI joints injections went well.
All I have wanted all this time is to starting narrowing down my pain generators and the only reason I signed up with PM was to get the diagnostic injections and this PM doctor tells me he won't do them. He knew I was coming in their for that (at least my MD faxed them orders and called them many times) and he didn't take the time to tell me before I came in and waited six hours that he won't do an SI block, much less a bilateral block. I also found out that he would NEVER inject my piriformis and does not believe that my butt pain could actually be coming from my butt.
Naw! Butt pain, butt tenderness, pain in which I can point to where it hurts...tenderness all along my piriformis and gluteal tendons..that couldn't possibly be coming from MY BUTT! It has to be coming from an facet joint in my spine at L3 or something.
Yeah, spinal arthrits (his assessment) makes total sense for a normal, healthy 28 year old endurance athlete. There's noooo way I could have actually aggravated my BUTT by the ultramarathons and centurys I have biked. Spinal arthritis with a perfect MRI and x-rays--a "perfect spine" according to every doctor who has viewed my MRI's.
I went home and cried my eyes out, I think I was talking to the air, sobbing and saying, "why won't somebody help me?" It was one of the more pathetic moments in my life.
Instead of the SI block, this PM doctor decided it would be better to put Fentynal in my spinal cord to "prove to me that my pain could be taken away." He thought that I needed "hope" and I guess an opiod in my spinal cord was supposed to do that. And, no, I didn't let him put and opiod in my spine in order to diagnose my burning searing butt pain.
I am crying right now, the next morning, just thinking about it. I just couldn't believe he would do that.
So, that's the story. No SI block, not a chance for a flouroscopy or CT guided piriformis injecton. Not by this doctor. And I spend two months going through all hoops with his clinic thinking he would do a diagnostic injection. I don't even know what doctor to turn to at this point.
So, back to square one, after two months of copays, office visits and classes. This is the lowest I have ever felt during this 10 month ordeal.
I still can't sit well, walk without a limp, ever have a moment without pain (in 10 months) and I am no further today than where I started last March. I don't know what to do anymore.
We're still trying to figure out the $$ part of sending me out to Filler. I wish I had a pot of money, I would be there tomorrow. Even if it wasn't PS, he seems like at least he would help me find some answers...and get me closer to figuring out why I have burning, searing butt pain. No one else has even gotten close.
Sorry for the bitchy, downer email. I just had to vent.
Hope you all have a great, low pain day. Many hugs are being sent to each of you. *hugs* *hugs*
Take care,
Julie
Vent away. I have no/none/zilch/notta doubt that you are angry, frustrated, and discouraged and that's even on top of a great deal of pain.
That was a description of some of the most unprofessional behavior that I have ever heard of and the doctor and his staff should be ashamed and embarrassed.
There are no words that I can type on here that can even begin to adequately address how you could possibly be feeling so I won't even try beyond the above.
Very, very sorry here.
David
At best, it might have given you some pain relief in the SI joint, but it doesn't tell you a darn about the piriformis.
Of course, you have pain in your SI joints! Your sacrum & pelvis are out of alignment! And the piriformis is the "rudder" of the sacrum. Injecting the SI joints with anesthetic & steroid MIGHT soothe the SI inflammation, but does nothing for the underlying problem.
You never answered my question at the PS group. Have you seen a Physiatrist or Sports Medicine doctor? I hate to tell you this, but, according to the survey, most runners are diagnosed by MANUAL EXAM by a Physiatrist or PT. No injections necessary. I don't know what treatment you have had, but if you want to move on to surgery, then I could see having Dr. Filler's array of tests & injections prior to surgery.
I'm guessing all your hip rotators are in spasm. Have you had any manual therapy to address your muscle spasm? What city do you live in? Maybe I can find a recommended therapist for you.
Sorry, I have to go. I'll check back tonight. Mary
I have been to many DO's, chiro's, 2 PT's, prolotherapy, and yes, I have had manual therapy for 7 months. My hip rotaters have been worked on, my piriformis has been worked on (via massage, MFR, deep tissue ultrasound, etc). My whole butt has been in therapy for basically 10 months.
The reason for the diagnostic tests is determine what the pain generators are via numbing them. I have consistantly been diagnosed with PS via manual exam and am not taking a huge leap to injections before at least having that diagnosis. It's a no brainer that my piriformis is in spasm. But my SI burns like hell, too. That, and if my pelvis is all tourqued out of whack, NO ONE has ever been able to get it in (and I have actually traveled to doctors to see if my pelvis is out in if someone could get it back "in"...up to 300 miles of travel and, nope, my SI's won't budge...but the right one burns like crazy).
I don't know if my piriformis is so spasmed it's pulling my SI's out of whack or vice versa. Hence the diagnostics.
I never assumed that and SI injection would relieve my piriformis. It would, however, tell me how much of my butt pain is SI vs. piri...which is a start. I am assuming that an SI block would not touch my burning searing butt pain, but until I have that block, it's all assumption and I don't know.
This is a hard place to be...I have done everything by the book and to the T and haven't improved. And I have been with some fantastic practitioners. But I have not improved one bit. I'm just trying to get some answers, step by little step.
Julie
So very sorry to hear how your appointment went. One of the hardest things in this whole ordeal is being told you don't know where you pain is or even that you aren't in pain. It always made me want to scream or cry and I can imagine how you are feeling now.
Hang in there...
Love, hugs and prayers
Donna
Hi Julie
*hugs* I'm so very sorry that doctor was a butthead after all the hard work you did to see him. What a jerk!
I hope you find some answers soon and better yet, some relief!
Stay strong,
Kayti
Thus far today I have spoken with my Dr. who is rescheduling the block with someone else. I am seeing him tomorrow basically to vent and to see where he is sending me and when I can get in.
Also, I called the PM clinic and asked to be released from their care. I never went there to be "pain managed"...I went there for the diagnostics. So, I figured if they can't do that, then I don't really need to be a patient of theirs.
And, finally, I have scheduled an appointment with Dr. Filler. I had originally scheduled an appt much earlier but I knew when I called them that I wouldn't have the funds for the trip by then. So, hopefully by now we have compiled enough money for me to make the trip. If I do get to go, I plan on staying a week and getting all the diagnostics done by him. I'll worry about paying for the surgery when/if it comes to that.
Also, by then I'll have this SI block done so I won't have to wonder if this pain is SI or piri. We'll have that part out of the way (I hope).
So, I've been busy at least trying to get some control back after my experience yesterday. I think the hardest thing for me is the waiting. I can not sit nor stand nor walk for any distance and I am a nurse...and I can't work (I LOVE my job, btw). So, I'm here at home basically trying to exist through each day until the next appt or test. PT keeps me busy, but at this point even they are saying that all they can do for me at this point is give me some symptom relief but they just don't know if they can help me. They are good people and if I could be helped with PT they would help me. They have never had a patient like me that just doesn't get better...I never knew I could have a condition that wouldn't respond to treatment.
For all my 28 years I have been an athlete and have felt strong and invincible. This has totally brought down my world. I have never, ever met a challenge that I could not overcome...and this pain has brought me down to my knees in tears. I wouldn't wish this on anyone (even that PM doctor yesterday!)
Take care everyone. Hoping you all are having a low pain day. :)
Julie
Hey guys,
I was thinking about it (a whole lot) and I am coming up on the one year anniversary on my "climbing accident" where I think I managed to get PS. It will be one year on the 28th. It wasn't an accident, per se, but it did involve a rescue. Basically, I was hypothermic and had to stand in a very odd position for 12 hours and I think that's how I got this. Anyway, due to the epic nature of the whole ordeal, the climbing community in the southeast asked for my climbing partner and I to write about it and I have a site that kinda tells the story of what happened...and why I think my butt is in constant spasm today.
I haven't looked at it in months, mainly because it was pretty traumatic and my fiance (and climbing partner) and I still get chills when we recall that night. Lot's of woulda, coulda, shoulda's...wishing that I didn't end up with this pain as a result of our poor judgement. We can never go back and change what happned, but are trying so hard to help get me better and back climbing again.
My symptoms started about a week after the accident. It started with a catch in my butt when running and went from there. By the end of February, I couldn't sit, stand or walk well. And I've been like this ever since.
The theory is that the way I stood for so long and with such a low body temperature basically caused the PS. I was clinched up, convulsing with cold and standing trying to stablize myself for 12 hours. So, that's why we think I have PS.
Thought I'd throw the story out...I guess it's a little theraputic for me since the one year anniversary is coming up. My goal is to get better and get back to that route and finish it right. If I can do that, I know I am better.
Take care,
Julie
My head is spinning after reading your posts about your recent doc appt and just the recap of your complete nightmare. I wanted to remind you that you are not alone (unforntunately) and you can and should vent whenever you need to. I'm in a holding pattern waiting for the 9th to see Dr. Filler to discuss surgery. I'll let you all know what he says and again, thanks to those who continue to post their recovery stories. Take it easy all.
Leesa
Glad I did, but wish I didn't have to. I've developed a seroma (translated means a big cavity just under the incision) which is collecting a bunch of fluid which has to be drained off. The surgeon opened the wound, inserted a tube and now I have to return every day for the next 3 weeks to have it drained again. He did say the local surgeon can do this procedure so at least its not a 4 hour trip to have it done. But on the other hand, all our Christmas plans have had to be canceled so I can be close to the hospital.
Of course all the extra manipulation has caused extra pain. But its better that we are dealing with it and getting back on the track to healing.
Donna
Julie, thanks for sharing your story. What an ordeal. My sincere hope is that you get to return and conquer that climb. With your spirit, I have little doubt that will be the case.
Donna, I'm very sorry to hear about your setback. Remember(as if you haven't figured this out already), that this too shall pass and you will resume your rehab the way you were heading.
It's been about 2 1/2 weeks since my surgery. It feels like a lifetime but I think my expectations of my "toughness" assumed I am still in my 20's when things healed so much more rapidly. Getting old is not for wimps.
I'm over the stomach bug and hungry. Correction: Real hungry! That little bug set me back probably 2-3 days. I was so sore and weak and mentally speaking, it just wiped me out. I've still not had my 2 week call with Filler's NP and I have questions that need to be answered in terms of exercise and routine from here.
I've been walking quite a bit. Not fast, not gracefully but walking. I probably walk perform 3-4 30 minute walks up and down the drive way per day. Lord knows what my neighbors(those who don't know us anyway) think but I'm sure there are some pretty funny speculations running around out there.
I'm still sore. It is disappearing incrementally each day and with the exception of the butt/incision area, it can be kind of random. Same with the nerve pain. The right leg nerve pain is basically healed, at least for the amount of activity I'm doing right now. It shows up sometimes in the right foot but it can disappear just as quickly. The left leg nerve pain has turned into a routine but I have signs that give me hope.
When I first get up, there is no nerve pain in the left leg. After being up and walking for about 10-15 minutes, I can feel some pressure in the shin. It doesn't hurt, it just kind of tingles. Then it leaves the shin and moves to the arch of the left foot. This feels like a severe chafing and is a bit uncomfortable. What I've learned is that when this happens, if I will go lay down for just a few minutes, it will disappear. Then the cycle starts anew. The fact that it tends to move around and disappear is what gives me hope. This is relatively new data for me and I think it tells me that something is changing for the better.
My Mom mentioned to me on the phone that when she had my brother many moons ago, they/he nicked her sciatic nerve during the C-section. You ladies might understand how that may happen but I don't. Nevertheless, she said she remembered it took several months for the nerve to heal and chill out so that gives me some back up and what Dr. Filler said to expect with nerve pain.
I'm still having a few minor buttock muscle spasms and these tend to occur later in the day when I'm physically drained. These make my upper buttock sore like I'm having low/low/low back pain. Also, I know what Donna is talking about when she said her thigh kind of ached after exercise. I feel the same thing. In fact, my right thigh muscle is twitching away right this second. No pain. Just a dull ache and twitching.
Finally, and I hate to even bring this up but you might thank me later, be prepared for constipation due to the drugs. Maybe it's just a big deal to 47 year olds but it's one of the hardest things I'm dealing with(no pun intended). I'm sick of it. I can't wait to get completely off these dang pain pills. I'm down to 1 Tylenol #3 every 4 hours which takes me right to the edge but I'd almost rather be in pain than constipated. I want off these drugs. I know it's premature but I'm determined to get off of them as quickly as possible. No addiction risk here because I HATE THEM!
Oh well, that about sums it up for now and it represents the good, the bad and the ugly.
David
Sorry to hear about your wound and the drainage. Yuck!
What kind of surgery was it? Open (cut with a knife) or arthroscopic? I'm interested what kind of wound would accumulate fluid like that.
Chris