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melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/12/2009 1:06 AM (GMT -7)   
Hey all,

I don't think I've gotten more than about 20 hours of sleep in the last seven nights. My arm is awful. I've tried everything, my tens unit, hot packs, I'm not sure what else to do. I'm scraping by on about two or three hours every night, and I'm scraping the bottom of the barrel. I tried calling the PM here, but he can't get me in before I leave for home, and my regular PM at Mayo can't get me in until January 11. Grr!

Sorry for the vent, hope everyone else is sleeping soundly!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 12/12/2009 6:01 AM (GMT -7)   
Hi Jenna
I wish Iwould have gotten online during the night last night, I could have kept you company! I was up most of the night too! It is misserable being awake and in pain late at night! It is a very lonely time and pain seems just that much more intense! I understand how frustrating it must be to have to wait to the 11th of Jan to see your PM! Just as a side question, how do you like Mayo's? I have been there for treatment, and also my Daughter is a nurse at St. Mary's Hospital there! I have mixes feelings and emotions about the place, anyway, I was just curious how and what you felt about it!



I guess next time I have a bad night, ( this past week has been a bad one for me) I will have to check in here to see, if I have company ! I hope you are feeling better!



I wish you well!!



White Beard

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/12/2009 8:59 AM (GMT -7)   
Yes, I was up till 6:00am. I pop in & out of here all the time late at night. Many times I am the only one on the entire site. I just assume most people are in their beds asleep while I sit at this stupid computer looking for something to do. I try to be quiet so I don't wake up the other one that is snoring so loud it sounds like a freight train rambling thru the house. Wish I could do that, just one night.

It stinks you are having to wait so long to see the drs. One thing you can bet none of these guys have ever experienced pain like this, otherwise they wouldn't make people wait so long.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/12/2009 12:57 PM (GMT -7)   
Thanks you guys. Bummer to hear you were up too, it really is no fun not being able to sleep.

White Beard, I've also got pretty mixed emotions about Mayo. Their pain clinic for the most part has been great, though all of the doctors there I have seen were fellows so I keep having to see new people each time I go up. Its nice to get a fresh perspective, but it would also be nice to have someone who already knows me. My only other problem with the pain clinic is that they were really pushing the spinal implant, even though I had not had a definite diagnosis from anyone. Made me pretty nervous, but still everyone there was very compassionate, went out of their way to be helpful, and you could tell they really care about their patients.

Their ortho department, however, was a very different experience. I was very, very, very frustrated with their "top" shoulder guy. He didn't actually touch my shoulder during my exam, and addressed my dad during my appointment. I'm in my early twenties, and granted I look young for my age, but not THAT young. He was asking my dad how much pain I was in. He then told me that he could find nothing wrong, and as that was my second appointment with him, that he didn't think they could do anything else for me. Turns out one of my diagnosis is bursitis, which is a decently common shoulder problem. My shoulder cracks and pops, loudly and painfully, and did not do so before I fell the first time. When I asked him what was causing it, his reply was that "sometimes shoulders just do that." Needless to say, I will not be seeing him again.

Hope everybody gets some sleep tonight!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/12/2009 6:26 PM (GMT -7)   
Jenna,

Did you have an MRI of your shoulder done? The symptoms you are describing as well as the nature of injury would make me suspicious of a labral tear. The labrum is the cartilaginous lining of the inside of the shoulder joint. When you tear your labrum, it can cause the head of the humerus to "catch" as it moves around in the joint & thus you get popping & clicking. These tears can be hard to see on MRI. I've had 3 shoulder surgeries, my first was for a labral tear. You can also get the popping & clicking from loose ligaments, but that's usually due to a chronic process (my other 2 shoulder surgeries were on my ligaments because I basically destroyed them -- competitive swimming, it's rough on the shoulders). And another thing that can cause the popping & clicking is inflammation within the joint. Even though my shoulders are completely repaired & healed I still have some residual popping & clicking which is probably due to some low level chronic inflammation in my shoulder joints. I can't believe the doctor didn't do anything hands on. You really can't make an accurate diagnosis without putting the shoulder through a series of motions & tests & watching/feeling its response! I think you need to bag this guy & go see someone else!

I can relate to the frustrations with the doc only talking to your dad as well. I'm also in my early 20's. I usually go to my appointments alone, but every once in a while I bring a parent along for support. There was this one time this summer where my mom came with me to a doc's appointment because I needed someone to drive me home since the appointment was to have a nerve block done behind my eye & I wouldn't be able to see out of that eye for hours. Well I didn't see my normal ophthalmologist because he wanted someone more experienced with that type of block to do the procedure so he had one of his partners do it. This guy ONLY talked to my mother, he explained everything to her, asked her if she had any questions, etc. Um, hello! I'm the patient, I'm 21, and she's only her for support/to drive me?! TALK TO ME! My mom essentially told him that & the guy apologized, but he still proceeded to not talk to me directly. Ugh, being young can be so frustrating at times.

I'm with you on the sleep thing. I hardly sleep at all because of my pain. I hope you (and all of us) get a good night's sleeo tonight.

hugs,
Skeye

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 12/12/2009 7:22 PM (GMT -7)   
Jenna
The one thing I will say about Mayo Clinic is I will never go back there! I had felt I got the run around and all they did was redo all the test I had previously had done! Jenna and Skeye I don't blame either one of you for being upset with your Doctors! You are both adults and the Doctor should be talking with you about your condition not your parents! That would definitely upset me too! Jenna are you sure that your arm pain is not caused by the nerves in you neck? Where is the pain in your arm, is the pain feel like when you hit your crazy bone and raditates into your hand? The reason I ask this is because, pressure on the nerve roots coming our of your Cervical spine can cause this type of pain. I just had a C5-6 disk fusion because of having this type of pain, it was a bad disk and bone spurs in my Cervical spine. Anyway that can often cause severe arm and shoulder pain! Have they done an MRI of your neck? It is to bad that that so many of you are so young, Jenna, skeye, JustLiveLife and to have to suffer with Chronic Pain. I do wish all you all the best and I do hope that they find an answer to your pain, you are all way to young to have to spend your youth fighting pain and searching for anwers to it!

Good Luck to all of YOU, I Pray you will all get better!



White Beard

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/12/2009 7:39 PM (GMT -7)   
Thanks so much, everyone. Skeye, I know exactly how you feel. My dad had come along because they were planning on doing a trigger-point injection later on, plus after most exams I'm pretty beat up, but yeah he was there FOR ME. I was shaking I was so mad. And actually, my uncle is an occupational therapist and he also thought it was a labral tear, after a very thorough exam. Unfortunately or fortunately though, after a contrast MRI there was no sign of a tear. I was pretty upset after that one, he had been so sure :(

White Beard, unfortunately yeah, they've done MRI's of my entire spine and have never found anything. That is the most frustrating part of all of this, for me. I feel like if I actually knew for sure what the problem was, it would be a little easier to cope. At least then I'd have something to fight against, instead of just pain. Although I'm working with the bursitis/dyskinesia diagnosis, I've still only had one test that actually confirmed it so I'm still a bit skeptical. Especially since I've seen no improvement after six months of PT, which was what was supposed to "fix" it. I just manage to continually baffle the medical community! Though I do agree, about every time I go up to Mayo, they repeat everything all over again. Luckily, as I'm from Iowa, I'm covered by my parents insurance until I'm 25. Now the trick is getting this all fixed in the next two years!

Thanks again, to everyone. I'll try to remember to stop in again if I can't sleep, hopefully if anyone else is unlucky enough to be in the same boat we can at least keep each other company!

Hugs and prayers,
Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/12/2009 9:50 PM (GMT -7)   
Jenna,

Labral tears can be really hard to see on MRI's. When I tore my labrum my first orthopedist told me that I may have a slight tear, but he didn't think so. He also told me that I just had bursitis. After 6 mo of home PT & no improvement I fired my orthopedist (many reasons why I didn't like/trust the guy) & instead saw a surgeon at the Hospital for Special Surgery in NYC who is one of the top shoulder surgeons in the country. I loved him. Him & his PA are two of my favorite doctors I've even seen (and I ended up having to see them for a good 4+ yrs). He had his radiologist re-read my MRI films & they basically told me that those films were worthless. I had had my original MRI w/contrast done at a local hospital. The surgeon said that the machines they used at that hospital were like something from the Stone Age compared to the ones they had at HSS (they don't even need to use contrast -- which is a huge relief, especially when you have 5 or 6 shoulder MRIs done). They redid my MRI at HSS & found that yes, I had a moderate sized tear in my labrum. BUT, what they didn't realize until they got into the shoulder that actually 80% of the labrum was torn, so even that MRI didn't tell all.

Of course I'm no doctor & I wouldn't presume to diagnose you, but I'd definitely have someone else take a look at that shoulder. Yes you can have normal but cliquey joints like your doc suggested, but your description of your injury & symptoms really scream labrum to me - especially since one of the most common ways to tear your labrum is by falling on an outstreched are (it's also a very common injury in baseball pitchers. not so much in swimmers, but I guess I was one of the lucky few). You really need someone to at least feel & manipulate your shoulder before they tell you what you do or don't have going on inside.

Oh, and I also wanted to say that I understand exactly what you mean when you say that you think you could deal with your pain/situation better if you had a diagnosis. I feel the same way! Three years and still no diagnosis for me, yet things keep getting worse. I keep getting told that I'm one for the medical journals (once they finally figure out what the heck is going on)! It is so FRUSTRATING to say the very least!!

Hope you get some sleep tonight! I'm usually awake, but not often online because it's too hard for me to read.

hugs,
Skeye

Post Edited (skeye) : 12/12/2009 9:55:54 PM (GMT-7)


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/13/2009 12:09 AM (GMT -7)   
Skye,

Thanks so much for your advice. I'm hoping maybe another pair of fresh eyes at Mayo can help, if not, I've talked with my parents about heading to New York City, as I'm in grad school about four hours away. I'm not really sure who I'd see there, but I figure at least I have some more options. I'm really sorry to hear its been three years for you. I hope they can figure something out for both of us, and soon!

Hopefully you're sleeping well, its 2:00am here and it looks like its going to be another long night. I'm already caught up with all my tv shows online, lol, but my brain is too fuzzy to work on my historiography paper that's due on Monday. Maybe I'll put in a movie and see if I can relax a bit. Hope everyone is sleeping soundly!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?

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