It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Back Problems Message Board

Back Problems Board Index

My first post here and it is more to vent than doctors have told me they cannot do anything for me, just treat pain, which SUCKS big time!

I've always been very active in my career and family life, until 2012, when I HAD to retire on disability. I'm only 44 now and it is a reality that makes me remember back when I was younger and I could never see myself past the age of 60 (not sure why, but I never thought I would live that long because either the world would end or I would). I am happily married with 4 children (all with varying degrees of special needs--2 biological and 2 adopted)

In 2010, I was having a coughing fit and experienced the most SEVERE low back/hip pain in the world. I couldn't move and was taken to the ER via ambulance. They quickly told me I was having a back muscle spasm and gave me multiple shots. I was still crying and screaming every time I moved. I kept telling them I had two babies completely NATURAL (no epidural or pain meds and one was 9 lbs and face up) and that pain PALES in comparison to this pain. I couldn't put any pressure on my left side at all. Well, the nurse finally came in at one point and told me (I kid you not!) "We've given you all the pain meds you are going to get and you need to be quiet because you are disturbing our heart patients." I have never done drugs, don't drink, don't smoke and that just made me cry. I asked them repeatedly for an MRI and they said muscle spasms dont' show up on MRI. They sent me home; my pain still at 9 out of 10 (I found out later they said my pain "resolved" in the ER chart notes). I went to my doctor the next day and she ordered xray which showed nothing. The following day, I had no pain at all, in fact, I couldn't feel anything on my left side (and going down my thigh and into my groin area) and I couldn't feel myself pee. I called my doctor and she told me to go to the ER and have them call her; she will order MRI emergency. The doctors treated my like I was a hypochondriac; asked me if I needed anything for pain. I told them I had a slight headache and a couple tylenol would be nice and just left me there in a room. 9 hours later, I got my MRI. When I came out of it, EVERYONE's demeanor changed. I asked the tech if I was just imagining it...she said, "No, honey, you have a VERY BIG owie!" They got me back in the ER and started hooking me up to all kinds of meds to get swelling down and put me in the CCU on spinal cord injury protocol. They couldn't do surgery until swelling decreased. What no one could believe was that a simple cough caused a complete disc blow out and break off at T12-L1 that was crushing 2/3 of my spinal cord. All my symptoms from the beginning were consistent with Cauda Equina Syndrome. Surgery (laminectomy/laminotomy) was my only option to remove the broken off disc and it worked and it was done 3 1/2 days after initial injury. 10 weeks later, I returned to work and was feeling much better.

Fast forward two years later. December 2011-March 2012, my upper back hurts SO much, I miss a lot of work. Begin evaluations for chronic upper back pain. My spinal surgeon tells me I'm done working. My spine is such a mess at so many levels, they have to work hard on getting pain under control. No diagnosis is forthcoming; however, all treating doctors ask me how my spine got so bad. "Were you really athletic or in any accidents?" My answer always, "No, but I was really active." They keep telling me they don't see this kind of damage unless there was significant injury (falling, auto accidents or athletic injuries).

(I begin to think back about when my back pain first started then remember having a lot of back pain as a teenager and I was told it was just growing pains. At age 18, I remember having such bad upper back pain that breathing hurt for 3 weeks until my parents took me to chiropractor who told me a rib was out and causing my back pain (no MRIs were done). Several months of chiropractic treatments allowed me to regain strength and mobility and lead a normal life; but my ribs keep popping out of place and caused me to go in for frequent adjustments throughout my life.)

I leave my awesome federal job of 10 years with serious potential for advancement for disability retirement (which takes 1 year for federal disability to be approved and two years for SSA to approve me). My SSA approval was just this past March. Just being upright hurts. I take all kinds of meds to manage pain and other meds to counteract the affects of those meds (neurontin, baclofen, ibuprofen, lexapro, xanax, norco) and I HATE taking meds so I just try to deal with the pain by adjusting my position frequently throughout the day and getting in the hot tub from time to time. My best days are hot and dry days. Summer is almost here and we have had a few of those so I was med free for a couple days which was AWESOME! I can't wait for real summer to get here! Full moons affect my spine as well. Wish I could live in an antigravity environment as pools and hot tubs are my best friends. On top of all this, just this past winter, I was diagnosed with Trigeminal Neuralgia and Occipital Nerve Neuralgia (fancy ways of saying I get SEVERE facial pain headaches which are always on the left side of my face. It was something I started getting when I was a teenager and have had throughout my lifetime, but was always told it was just migraines or headaches that would last for days on end.)

After having 24 nerves cut (4 rhizotomies) and 3 epidurals (which only give me a few months of relief), my doctor refers me to a thoracic spine specialist. Thoracic spine surgery is RARE and requires specialized surgeons (rightfully so when dealing with the heart and lungs and other vital organs protected by the rib cage. I'm referred to the world renown thoracic spine surgeon at UCSF for evaluation. He looks at my MRI and tells me "My dear, it looks like you drew the short straw." I ask, "What?" He states, "I'm going to tell you what you have already heard. You have so many levels involved, it is impossible for me to figure out what level is causing your pain. All your endplates are abnormal throughout your thoracic spine with Shmorl's nodes at every level which causes your degenerative disc disease; along with disc extrusions at 4 levels. I'm going to call it Atypical Scheuerman's Disease and it is congenital." I tell him, "No one has ever told me that, you are the first to tell me that." He is not surprised no one told me this. I ask him if it is hereditary and tell him about my 16 1/2 year old daughter who is having the same symptoms I had at her age. He gets concerned because he thinks her pain may be psychosomatic (because I'm always in pain) and he feels she should be evaluated by a psychiatrist. I told him that she has other medical issues (premature, lung problems, kidney problems, hearing loss, visual loss, BAD and frequent headaches, mottled skin and a dislocated rib that could only be put back into place by a specialist DO) and the fact that she is being evaluated by the MS clinic at UCSF. He again states she should see a psychiatrist. He tells me to get a good pain management doctor on my team and that my thoracic spine will eventually fuse itself. The good news is that when it fuses itself, the pain will be greatly diminished, but I will be stiff. I leave his office with my family discouraged but at least now I can prepare for my future (what it is) and move forward with this knowledge.

Not long after we get home, my daughter experiences first pain, then loss of feeling in her left thigh. I take her in to the ER and they say they see nothing of concern. The next week, her left arm goes numb. Both her thigh and her arm she cannot feel pin*****. Her GP doctor confirms this and sends her to MRI. Low and behold, she has TWO bulging thoracic discs, but are not the cause of the arm/leg loss of feeling. (Thoracic disc herniations are extremely rare and she had no injuries or accidents, save for that rib that keeps dislocating....sound familiar?) We take her to UCSF and they see same results on left arm and left leg (loss of pin***** feeling). If not the spine, it must be in the brain (which she already shows PVL (periventricular leukoplacia) around her optic nerve, most likely associated with her preterm birth and lack of oxygen first day, but MS cannot be ruled out for certain. I tell her doctors about my diagnosis and tell them about her Thoracic spine disc bulge and I want to be referred to a geneticist. They tell me "No, we will not refer you to the geneticist without a reason." I tell them it is to see if she has the same problem as me, specifically, a connective tissue disorder that MAY be Marfan Syndrome (my diagnosis is atypical scheuerman's syndrome that does have many similarities to Marfan Syndrome) as her other symptoms deal with connective tissue disorders and her history and my history are extremely eerily similar. They refuse to send us and doctor says, "NO! She doesn't have Marfan's Syndrome! She would be taller and VERY thin and gangly." (Marfan's Syndrome can actually come in varying degrees and although many have that characteristic, not all do. I've done extensive research on this subject; what else would I do with all my time I have at home now.) Then the specialist at UCSF states, "Just let her be happy and live her life. She is a teenager and she shouldn't have to worry about this stuff. She has a kidney specialist taking good care of her, she has UCSF neurologist taking care of her headaches and visual problems, Oakland Children's Hospital taking care of her hearing loss/aids, a DO and physical therapists that are taking care of her dislocated ribs and bulging discs, and her GP who is keeping a good eye on her." I tell her, "Yes, you all are taking good care of her issues, but NO ONE IS PUTTING THIS ALL TOGETHER except for me!" I can see my daughter's neurologists is getting frustrated as she again tells me to basically drop it and "let Ariel live her life and be happy." Ariel looks at me and asks me, "How can I be happy with all the pain I'm dealing with?" The doctor then tells Ariel to be happy she is getting care for all these issues. For fear of UCSF filing charges against me and taking my daughter away from me (as Boston Children's Hospital has with Justina Pelletier) I drop it and just move on, thanking them for talking it out with me.

So along with my diagnosis and trying to keep pain management my focus, I'm frustrated beyond belief about my daughters "specialists" refusing to check into the possibility of Marfan's Syndrome. She has ALWAYS complained of joint pain (which we keep telling her is just growing pains) and her other organs affected are all related to connective tissue disorders. They ruled out Lyme's Disease, ALS, and Lupus with blood tests; but MS is not totally ruled out yet. Marfan's Syndrome would explain a lot; but it is apparently too much to ask for. It is a test for the fibrillin-1 genes. We have GREAT insurance and all is covered. I do not know the reason for their strong reluctance except for the fact that Obamacare may have changed the way they treat all patients.

Ariel cannot drive because of her nearsightedness that cannot be corrected with glasses or contacts. She can see far away only if she looks through pinholes and that won't do as it cuts her peripheral vision. She keeps having more and more eye tests at UCSF (which keep showing as there are problems, but they cannot figure out why or what). She cannot be a "normal" teen if she cannot drive, cannot hear well (even with hearing aids), cannot get a job....all things she wants to do. She CAN get SSI which we are working on now. She is in CP classes at school and wants to teach Deaf and Hard of Hearing Preschoolers as an adult. She is well on her way to this goal and will be eligible for all kinds of financial aid to achieve her goals.

So let me ask you all out there who actually got to the bottom of this I asking too much when I'm asking for the Marfan Syndrome testing? Am I being a hypochondriac? I've accepted my health concerns, but I have a chance for my daughter to not have as many as I have had so she knows what to look out for and she can actually get epidural steroid injections to get her discs back into place BEFORE they all go bad, like mine did.

Okay....done venting.....for now.


All times are GMT -7. The time now is 12:00 AM.

© 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!