An update:) No driving for me:(

[optimus22mac]

Soooo......I went to the doctor, and he said I cannot drive...probably wise in case I have any more episodes....but he said he would not officially suspend it like he is supposed to do by law, because he said it's very hard to get back after a medical suspension...so he made me promise not to drive, and I did:)

I am now putting all of my other issues on the back burner until this one is sorted out.  My EEG is August 17th (Yes...I live in Canada!) and the MRI of the brain is yet to be scheduled, so I'll probably call the hospital next Monday...just to see if they even have my sheet at booking yet!!! I just want these tests to happen already so I'm not so paranoid all the time.  

I'll call the dentist Monday, since my mouth is a bit less sore now...had my stitches taken out, but still quite swollen where the "hole" is healing:(

So...I cancelled my appt w/ my OBGYN until after these tests; I had really wanted to go tell him how bad my pelvic floor prolapse is treating me...haha...I am so sick of having my uterus hanging out, and my bladder and rectum fighting for a spot in my vagina also.  He had wanted me to do as many Kegels as possible--to strengthen my muscles, but it hurts my sacrum and coccyx area....so it's sort of a problem.  I do understand the delay in surgery...I know that I'm not rushing to the table, but I want a timeline....I want him to tell me....."We will wait until xxxxxx days pass, and then schedule the surgery"...

As for my latest MRI on my tailbone injury area....I have severe inflammation of my sacro-iliac joint...and it's a sort of arthritis.  It definitely explains the severe pain I have post-surgery....sort of feel like I'm vindicated----too many people (some family) just thought, ok...you had the surgery....no more pain, right? I hate the feeling of doubt they all were giving me.  

Now, to wrap it up, I have sort of a question.  I haven't had any more episodes since the BIG BAD one that took me by AMBULANCE to the hospital.  I'm wondering something, and it's really hard to put into words, so I'll try my best to make sense.  Does anyone think that I had these episodes because the condition  of my body was "right or ripe" for a fainting episode? I get no warning at all....and my dr ruled out my medications and my exhaustion as causes...but what if the type of syncope I had will only happen to me WHEN I am very tired....that that stipulation has to be there----NOT that the tiredness caused it, but that I have to be very tired, and then something happens w/ my brain only WHEN it is THAT TIRED....??? Have I made any sense? If not....just ignore this part hahaha...

I wish you all the best....I love you all for everything you do on this wonderful forum.  We are such a great community of support for each other...and when we are feeling a little alone, it's so nice to remember the huge number of friends we have waiting at the Pain Management Forum:)

Love, Alison xoxoxoxo <3

[optimus22mac]

Yes, Tuck...I think (hope) this is just a blip in my system...I really really hope so!
Either my original MRI, or one of my x-rays before my coccyx surgery, said there was an irregularity at the sacro-iliac junction, as well as the crushed coccyx....
A few weeks ago I was sent for blood tests to test for the sacro-iliac inflammation and to see if it was due to reasons like osteoarthritis or something similar, or not....I did not get those results yet, but another way of problems occurring to the area is a severe trauma to the area, which I had with my fall when I broke my tailbone.  
I'm not sure what our game plan is yet, since it along w/ my other issues, is on the back burner for a few weeks:) I don't know to what degree the damage or inflammation is...
I should also note, that besides my coccyx injury fall, I also had a bad fall 14+ years ago, which left my very lower back in anywhere from moderate to acute pain since.  I did do quite a bit of massage therapy and Physical therapy for it.  So I am wondering if I have had inflammation to the area from before my coccyx injury....we had never done an MRI before, so I guess it's possible...
I am doing quite a bit of searching on the subject, and thankyou Tuck for all of the info you've given me:)

RunningMom! I am so sorry that your dad called you a liar! How awful you must have felt:( Really really bad.  I hope you hear back from the mayo clinic---not to prove anything to them, but to hopefully help you out in the long run!! That would be wonderful to be seen by their specialists.  I am beginning to keep things to myself also....just sharing with those who I feel I can trust to support me emotionally.  There really is no point in sharing with the others if it just gives me grief! I'm a grown-up:) I live with my own kids and husband, and though I do need periodic help from my parents, I think I'll just let them know what they NEED to know....which will hopefully prevent the questions and comments from other family members also.  

[RunningMom]

You have a wonderful doctor!  I'm so glad he is not suspending your license!  I'm so happy that your doctor is trying his best to figure this out!

As far as family goes, I have my mother who thinks I'm faking my neck issues.  I even brought proof to them this past weekend to show them that my spinal cord is being penatrated/compressed by something and they did NOT believe me.  It's beyond frusterating.  I don't tell them anything anymore.  In fact, I stopped calling them.  My dad called to tell me today that I'm a liar and that I never contacted the mayo clinic.

[Tuckamore]

Hello Our Dear Allison,

Not being able to drive for awhile I am sure is acceptable to you. Your physician was so gracious to not report your condition officially. I am sure you will honor his wishes.

I hope the hopeful that they can speed up the wait for the MRI. I know how weeks can feel like months.

I don't think that your syncope episode occurred because you were "ripe or right."  However as you know I am far from an expert. It could be that they will never discover why this occurred and it may never happen again. It could merely have been a blip in your system....which would be the best news.

The term for inflammation of the SIJ is sacroiliitis. I feel your pain!!! There are several reasons your SIJ can become inflamed or infected. These little kidney bean shaped joints can cause an immense amount of pain. They are formed between the articular surfaces of the sacrum and the ilium bones so it makes sense that your coccyx (tailbone) injury either included the SIJ or affected it. I encourage you to educate yourself, if you haven't already about the structure and function of he SIJ and the problems that can arise from it. Be aware that once you have a problem with the SIJ you should be alert for future issues with the joint. Often one, rarely both can become chronic if not treated promptly and correctly.  

Although my official DX is SIJ Dysfunction I have chronic sacroiliitis. They are not one in the same but they often go hand in hand. Isn't vindication great!!! After years of being looked upon as a malinger they found this chronic condition in me. It's crazy to say that I was so happy that finally I was beleived, finally there was a reason for my extreme pain. It was the best news I could have had....yes crazy but you used the best word to describe how I felt, Vindicated!

And though I have documented proof, undeniable proof there are still some that look at me with a disbelieving eye. I've learned long ago that they just don't count. They are not worth my concern. If they really had concern for me there would be no rolling of the eyes behind my back. So if that occurs among your family or friends, remember they just don't count in the scheme of things. Don't lose any sleep over them and don't justify their inaccurate beliefs with a defense.  

Yes, you certainly have "us." And isn't it wonderful to know that here you are accepted, beleived and cared about.  You pain and the challenges it brings does matter to us.

Gentle (HUGS),
~Tuck

[optimus22mac]

Thanks:) I can't believe that you had a mysterious note sent to you!!! You sure handled it right!! I would love to send the DVDs of all of my tests to anyone who thinks they know better...Good for you! We should not have to bend over backwards to prove our misery!!! I think we all wish we did not have to take painkillers, or see our doctors so often...I wish I could lead a normal energetic life!!! But we are not so fortunate...and it is NOT OUR FAULTS!!!

I have an aunt who is a nurse practitioner, who is sure she knows everything about my case and what is best for me, and is constantly in my mother's ear about it.  She is very anti-narcotic therapy.  She has now told my mother that my fainting episodes are only blackouts from taking my meds.  That is why I specifically asked both ER doctors (one the Neuro) and my family doctor....whether it would be from the meds.  All of them confirmed that it would not be from ANY of my meds...but that my episodes are most worrisome because there is no warning at all.  At the ER I also had quite a lot of twitching in my limbs...which are making them consider seizures...either way, they are taking my case very seriously.  

My aunt has never seen any of my records, or films, or imaging, or been with me to any doctor's appointments...nothing.  She is partially biased because of the fact I live just over the border from Michigan in Canada, and have to deal with the Canadian health care system.  Of course if I had insurance in Mi and was able to see the doctors there, they would be quicker and have many more resources to work with.  But I do not think that my doctors should be looked badly upon.  My family doctor has basically told me that I will be in significant pain for the rest of my life, and that I may have to take these meds for life.  Well, my aunt thinks he is just awful.  She says I should detox off the drugs, and then....she does not tell me what I should do for pain after.  Which was why I was so happy to have my latest MRI show clear damage....Isn't that awful? Happy to see something bad, so that she could see that there are definite reasons for my to be taking these medicines???
She has made me go back and forth in my mind questioning what I am doing so many times...b/c I want to trust her judgement as a NP, but I also know my pain!!! I can't walk some days!!! And on top of that..all the discomfort from my prolapse...which of course she reminds me all the time it would already be taken care of in the USA.  She also lets my mother and other aunts know what she thinks, which make me the talk of the family...and I just want them all to mind their own business!!!
I did try to stop taking my meds once...went thru the detox for 6 days...and the throbbing of my tailbone, and the fact that I could not sit for even a second, and i was laying on my side bedridden, not able to do anything for myself or for my kids...and my doctor thought I was crazy!! He then told me I have to trust him, and not necessarily listen to the people in my life who were just throwing so much confusion into the mix.  I know my doctor would not be prescribing me these meds if not for very good reason, and I have to remind myself of that.  Did I trust him before my aunt started poking her opinion in here and there? Completely.  So...From now on...I'm just going to worry about myself, and my family...and try to not worry about the doubters.

[designgyrl]

Hi Ali,

I was wondering if it was a mixture of medication, but I can tell you one thing that I am happy for you.  I'm glad you were vindicated from the test.  Most of us have stories about family members that do not believe our illnesses, I think Mary, Sherry, Jamie, Sara, and Tuck can account for that.  I don't know if I told you but I know someone who broke their tail bone and they are doing all these crazy tests and she says its so incredibly painful, I was talking to Tuck, and I got her disease mixed up with yours with my old boss, but I need to talk to Tuck a little more about the hernia.  I agree you shouldn't drive until you figure out what's going on just to be on the safe side, especially with your children.  My mom's old boyfriend (my mom passed three years ago)  has seizures, and when my brother and I were there for the funeral he fainted into me and I fell to the ground (this guy had to be almost 200 pounds and I'm 115) so it's very scary, but he has had them since childhood. They told him they could some stuff on his brain, but he chose not too do anything except take the seizure meds that help. I know they will find out what's going on  with you and get you back to driving as soon as possible.  I know it's some sort of law in some states (I know a guy that blacked out in his car and the police took away his license until he saw a physician to figure out what was going on) I'm sure you being TIRED did not help the situation, but I don't know much about fainting episodes, except I did it twice in one week and what my dr. found out that it was a combination of being tired, not getting enough calories in, and the medication that I was on. I fainted twice in the kitchen floor.

I also totally know what it's like to have vindication.  I received this "mysterious" dear ann note from someone in Michigan (I live in KC) saying that their family was worried about a sibling and medication that they were taking, etc...  Dear Ann response was very good, it just asked the person, have you asked the family member what the siblings illnesses are, etc... Well I got the hint.  I got a copy of my MRI that said I had the fracture in my neck, got the test that said I was anemic and needed shots once a month, and got another medical record, and mailed them to EVERY one of my family members.  Since then I've heard of nothing from my family trying to give me a hard time about my illness.  You just have to prove to family members (especially the ones that have never had an illness in their life) and it has completely shut them up on anything.  They don't ask a lot about my illness and I don't tell a lot but at least they believe me now.  I'm sure I'm not the only one that's had to show your family what's wrong with you.  I hope they figure it out really soon, and glad the stitches are healing.  My root canal is doing well, too, very little pain at all.  Just the night of and some the next morning.  They were completely right!  Feel better soon!