Walking Time Bomb Again?

Walking Time Bomb Again?

The life of a chronic pain patient is challenging. The primary challenge is usually physical. Secondary challenges involving one’s psychological well- being and often financial distress can take their toll. I finally made a trip to Ohio to see the jaw specialist for Ehlers-Danlos, in an effort to attempt to understand why I am not able to open my mouth very wide and chew without immediately slipping my jaw out of position. This started following my second neck fusion. However, due to this fusion, I am so much better than I have been in years – now able to walk, read and even drive, all with limits.

Upon examination and X-rays, it was determined the jaw was actually severely dislocated. I always thought all these issues were only the result of the fusion of the neck, thus something I would have to live with. I was fortunate to be a candidate for a mouth guard that is working to put the jaw into the correct position, with hopes that in time, it will begin to hold in place. My hope is that if successful, this device will make pureed foods a thing of the past.

But those x-rays also showed something I was not even contemplating. After just a year and a half from fusion surgery, it is starting to put too much pressure below C-4, creating a gap that should not be there. I listened and looked as the doctor pointed this out to me, but I was not able to talk about it with the doctor that first day. I knew in my heart what he was suggesting to me………and I was not prepared to process this new information.

Ellen Lenox Smith

On the second day, I was able to have that needed discussion with the doctor. Of course, this ability to speak about this issue came after that first day going back to the hotel crying, feeling sorry for myself and feeling that sensation of being scared of my body creeping back into my psyche. After getting that out of my system and I was more prepared to hear the truth, I came to the office the next day for my second appointment with a list of questions. So, I asked him, “What were you trying to tell me yesterday about that X-ray?” He shared that the gap indicated the fusion was going, in time, to eventually fail again requiring fusion even farther down the neck, within three years or less. I sensed this was the news that day before but I just could not cope with hearing any more.

So, after having about nine catatonic episodes before the second fusion could get booked, here we might go again. Am I back to being that walking time bomb again? Unfortunately, those events literally created PTSD for my husband who had to cope with watching those episodes. Those episodes caused us to face reality, sell our farm, downsize and move into a smaller home attached to one of our four sons so my husband would have help right through the door connecting our homes. It was a dramatic but realistic change needed for safety and support with these medical issues.

I have never been better in fourteen years. How am I supposed to handle being a walking time bomb again? I have endured twenty-four surgeries, four years in a wheelchair, not being able to read or drive for years to regaining so much within a few months of healing from the fusion. It is an overwhelming feeling that just takes over your emotions to even think about possibly having to once again experience all those losses when I actually have been able to heal and gain so much with my daily PT, my husband’s full support, diet, supplements, and exercise.

So now what? Do I allow myself to be drowned by this news or take the opposite attitude that I can beat this, stay strong and never need that fusion? I realized I just won’t allow myself to be dominated by fear and anxiety created by the unknown. I cannot sit on the sidelines of life by the fear of my life falling. I’ve lived that life while waiting for help with the last fusion, not sure I would be lucky to survive, waiting for that surgery date. I just can’t repeat that horror, wondering if and when this might happen again. Instead, I will try to choose living life to the fullest and do all I can to make this magic I have been experiencing continue on. I know my mind and emotions will slip on my tougher days, but I just need to live with hope and not fright. If I don’t win this next challenge and surgery becomes necessary, then I will have no choice but to cope with whatever it brings on. Meanwhile, I will bask in what I have regained with hopes it is mine to keep.

I often wonder if being made aware of possibilities such as I might face is a necessary and good practice. Is it worth even knowing what might be next or are we better off living without the possible next reality? At least knowing gives me every chance to do all I can to try to prevent or at least ease the possible next deterioration challenge that comes living with Ehlers-Danlos Syndrome.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

newest oldest
Notify of
Rakel

Jeffrey what an excellent post and attitude, well done. I agree that the fact a medical or surgical treatment exists doesn’t mean we have to choose to have it. No surgery is side effect free any orthopaedic change (including soft tissues) will generate other Biokinetic compensations which could cause worse problems. That is why so many surgeries fail, and many actually cause chronic pain. Surgery is a trauma and trauma to the body can fire the emergency survival systems of evolution which are maladaptive (that is what causes chronic pain our bodies don’t stop warming us that we are in danger).
Surgeons don’t tell their patients this or just don’t know it as the main talent required by a surgeon is tunnel vision, not an holistic view of the body as a neurophysiological -musculoskeletal- psychological system. I was lucky here in the UK to find an Orthopaedic Physician who looks at the whole person & never does surgery but he can rehab many damaged by it. Ellen this is no criticism of you you have clearly had no choice and I wish you less pain. We all need to realise there are no short cuts we have to keep our bodies moving and the muscles balanced (not easy with EDS which I have too) – To strengthen them we must train with expert advice daily. By train I mean for me at present that is four lower leg half raises on each side & stretch out gently in water so I’m not weight bearing. It’s sports science at a level to rehabilitate pain disability. Muscles that don’t move are spastic painful muscles. Read Peter Egoscue “Pain Free a Revolutionary Method for Stopping Chronic Pain”:
https://www.amazon.co.uk/Pain-Free-Revolutionary-Stopping-Chronic/dp/0553379887/ref=sr_1_1?crid=2OFSJFK0SKZ91&keywords=peter+egoscue&qid=1562958437&s=books&sprefix=Peter+Egos%2Caps%2C257&sr=1-1

Rosalind Rivera

Ellen, I truly sympathize and sympathize with you. I too am a chronic and intractable pain sufferers. I suffer with Spinal Stenosis, Lupus, Rheumatoid Arthritis, Chronic Fatigue Syndrome, Sjogrens Dease, , Fibromyalgia and a few other debilitating and extremely painful illnesses. About eight years ago, I went to bed as usual and woke up to find that I was paralyzed from the neck down. It was winter and I had wooden floors. By using my head, I somehow managed to shimmy myself to fall face down on the cold wooden floor. Mind you, my f phone was on the coffee table right in front of me but I couldn’t have used it even if it too had fallen right into my had. Iaid on that floor for thirteen hours screaming for help. During that time I had lost controll of all bodily functions from the neck down therefore I urinated, vomited and eves defecated on myself. I was absolutely terries that I would never be found and that I would perish on that cold wooden floor, petrified and allone. After thirteen hours, my landlady who lived above me finally heard my now very weak calls for help. Moving forward, I was rushed to the hospital and then transferred to another hospital where a team of surgeons were waiting for me. I was immediately taken into the surgical room where metal plates, rods and screws and bolts were placed into my now shatter spine. Agony was my companion when I finally did wake up and all I wanted was to die! I was then sent to a rehabilitation home where I very slowly and painfully began my road to recovery. I once again learned to feed myself, walk and all those other functions that we all take for granted! Moving forward ten years, I have recently learned from my pain management doctor that the spinal fusion never took place and I now suffer with screws and bolts moving around in my neck accompanied with greater intractiable pain and the possibility that i will awake to find that I am again paralyzed. PAIN PAIN my companion!!!

Gail Honadle

With every additional drug/medicine comes a host of side effects, and another med to counter that one. Pretty soon you are on 20 or more drugs to treat 1 health issue.

Kristen

Ellen, I’m so sorry you got some upsetting news. You are strong and such an inspiration to so many of us. It’s ok that you were afraid and cryed ,that does not make you a,weak person by anymeans.You are human with real feelings and of course you would be traumatized.Who wouldn’t.You really have been through so much and no matter what,you have to believe you will get through this to.I am praying for you and your wonderful Husband and Family.I too will be cheering you on.Sending prayers and well wishes your way.Thank you for sharing with us and always giving us hope.

Ellen Lenox Smith

Researcher – I understand your thoughts that you should never have a fusion – however, had I not resorted to having my second neck fusion, I would not have continued living – for c-3 three shifting was causing catatonic episodes, not able to breathe, walk or talk – so for me, it was a life savor. I always try Pt, exercise strengthening, bracing, even prolotherapy before resorting to any surgery. But sometimes with EDS, it becomes lifesaving, as this did for me

becky

Ellen, glad you saw doc M. Best in world for EDS. He found my daughter’s C2 is rotated so far that the end or tail , is poking in back throat making hard to swallow and tons of head migraines and who knows if all the other complete body pain that prevents her to have ANY quality of life, stems from that. We now looking at Cranial Cervical Instability that would mean screwing skull along with the decompression. When we go, to get it evaluated we will head your way ironically. Going be a while before can decide if I am able drive her, and her make the trip. Hard enough to get her to Toledo for an EDS doc there. EDS here too but nowhere as severe as you, and my daughter. So yes my daughter never got to have a husband nor kids. No one wants be with a person in pain no matter how drop dead gorgeous she is. What I wanted tell you is the geneticist warned us that one fusion would eventually require the next and the next… but like you say, since no pain relief guess surgery the only option. Not sure how I would get here there, especially return home.. no way can hardly drive that far, she is too fragile also.
No one understands the suffering EDS people go thru. Put Lyme and MCAS on top. Amongst much else. Hard to keep her wanting stay alive, best wishes

Martha

Oh Ellen, I have read so many of your posts. I always admire your fortitude but can’t help feeling a bit, maybe more than a bit – heartbroken for you. I understand. There are days you can be ‘mighty’ and amaze everyone with your endurance & courage, while other days, you just need to rest your body in bed to try to save up strength for what the next day will bring.
My only option is a multi-level cervical fusion with very low odds. Only you and your Dr. can decide what is best. I am sending you a big hug along with my very best hopes & wishes for many low pain days or hours.
Martha

Jeffrey Sampson

Part two it cut me off. Anyway point was simple for me when the doctor told me I was dying and my only real hope is a double lung transplant which I amay not eligible for several reasons one I have other health problems spinal, epilepsy with a host of other conditions that make me ineligible for anymore transplants and I don’t want them anyway. I have already lives fifty seven years I don’t want to take lungs that could be used for a young person that hasn’t had the chance for life yet so I decline anyway this fact shocked my doctors to their core they thought how nice I am but fight back as I explained to them pain made me face life and death long ago and I am okay with it besides Jesus not only listened to me he answered my prayers and has given me about three years left so I am living life to the fullest I never think about what anything is doing to me it doesn’t matter anymore that alone has brought me so much freedom I never expected what less see it coming.
I hope you and everyone else learns the same lessons I have. We cannot control what happens in our futures but we can choose our freedom and and live our lives to the best of our ability we don’t have to let pain rob us of our choices and our freedom we can’t always control pain or our bodies letting us down but if you think about it we are laying the ground work for future generations to get better care, treatments and am some point cures for other we are a part of a much bigger picture isn’t that alone a successful life? Anyway I wish you and everyone else the same thing.
God bless all

Jeffrey Sampson

Ellen,
I will also be praying and cheering for you! I believe the strength you need is deep inside of you and will rise as needed.
I have had an ongoing severe battle with my lower .lumbar failing and am beyond counting get the many surgeries and procedures and last year also learned my c spine is in a downward spiral. So I understand the anxiety and fear you live with or do as I have and let it all go while it’s hard you can do it let God take the wheel and you just enjoy life during the good times. Then towards the end of winter I thought I had gotten a really bad cold then started thinking my flu vaccine didn’t protect me as I kept getting sicker and sicker until I ended up in the hospital diagnosed with double pneumonia and thought OMG Please NO I just can’t do this I needed a break so bad from the pain and suffering as I finally started feeling better I prayed very hard asking Jesus to either help me out with the pain or just take me I couldn’t do this anymore I felt so bad but I honestly felt that way then a few weeks later after the pneumonia had passed spring was almost here and I knew when winter was over I would get a break from such severe deep hard pain. Well that day came the pain finally broke I was having a good day that’s a great day for me then out of the blue my phone rang it was my doctors figuring it would be a surprise pill count or drug test boy o boy was I wrong he was sending me to a pulmonologist the chest x-rays had some problems that he didn’t want to take any chances two maybe three weeks later I had to have a special x-ray done of my lungs a few days later I read on my electronic chart that I had pulmonary fibrosis and it’s a fatal untreatable lung disease. I read the report then shortly after the pulmonologist office called wanting me to come in asap that is when it hit me holy crap I just read I am dying. The next morning I had to take a forty five minute drive hearing it from the doctor was reality however it hurt the doctor I was ok

Please let me offer some solace. I have had neck issues for over 25 years. I had a car accident in January 2005 just months after buying a steel company. In August after trying every treatment imaginable I finally had my neck fused. Immediately, I was back to myself. I woke up the next morning and was at work by 7:00 AM. I was feeling so great that my husband and I were back to riding bicycles and kayaking. The problem was that we were also lifting the bikes and kayaks into the Jeep and in a year I had to have a second fusion.

Since then I have lived a normal life with sailing, kayaking, and other sports. That was over 14 years ago and my neck is still in perfect shape. You will always hear that the cervical spine either above or below will go but I am here to tell you there is no certainty to that erroneous statement.

Please know that doctors are not psychic. They don’t know what they don’t know. I am 60 and got Type 1 Diabetes at 16. I was told every horror story imaginable. In 1975 doctors had no idea there would be lasers to fix eye issues. I have 20/20 vision but was told I would be blind within 7 years. I was also told not to plan to be a grandmother. I have 7 step-grandchildren.

Don’t believe what they suggest. Live life to the fullest!

Signe

Ellen, I am going to be your cheerleader! Look for my supportive messages from time to time. God bless and you are in my prayers.

Give me an E, give me a double l, give me an e, give me an n. What’s that spell?
STRENGTH!

Michael Kastner

Ellen- your writings always touch my heart. You have taught me so much with your great attitude and thoughts.
Once again today’s article gave me hope just when I gave up (again). Your strength helps so many of us, amazing me and others! When so many of us would have given up, you take your situations and by looking at your issues differently you indeed find it inside of you to take on whatever comes your way
Ellen, thank you for helping so many of us regain our own inner strength to continue as opposed to giving in and giving up.
Your medical issues are indeed some of the worst nightmares one could have. Yet your great outlook on life, and happiness seems to have empowered you which your sharing helps empower us all
My thanks once again for your thoughts, dreams and sharing.
Please know how much your words help so many of us.
May God bless you
Michael Kastner

Cindy

Wow, I’m so sorry o hear this. It’s so difficult. You deal with one thing just for something else to pop up or out. I’m going through the same kind of thing. It’s difficult to keep hope alive. Thanks for your writings. I wish you all the best.

Chris

So sorry to hear about this development. I praise your positive, can-do attitude. I’ll keep you in my prayers as your navigate all that this new information entails.

Carol Hammond

Record Drs Visits!
When you go to the doctor you should record your time with them; I  use my phone recorder.  You will have all those comments! Check to see if it is legal in your state.  I’ve been doing this for years.  I also get the doctors notes for every office visits.

https://www.sciencedaily.com/releases/2017/07/170710135301.htm

Susan

I have lived 70 years in hopes one day i will need only 1 MD. Every time i see my PCP there is another doctor in my future. Well, as a child i didnt care how many. I have told my 2 main doctors – unless my life is in immediate peril, I’m not going to another doctor. I know exactly how you feel Mrs Smith. Doctors beget doctors. You are so Right to focus on the Now, than what could be. When we give energy to the future we take it from the present, and our lives become what we fear the most. Live today, tomorrow will take care of itself.

James McCay

Dear Ellen, I’ve read every one of your posts over the last 8-months since I found NPR. I feel like I know you. You are very kind, and very helpful to everyone.

I have to give you my honest, heartfelt opinion on this one: STOP ALL THE SURGERIES, AND LIVE THE GOOD LIFE YOU HAVE LEFT TO IT’S FULLEST! I honestly believe the only reason the doctors are doing surgeries on you at this point is to make money. This is one of the major downfalls of living in a CAPITOLIST country. No matter what the industry, the bottom line is always money.

I don’t want you to cause yourself to suffer so much by having these surgeries done that really aren’t TRULY helping you in the long-term, are they? You must weigh all the positive and negatives and make an educated decision as to whether these surgeries are helping or hurting MORE to you & those closest to you.

I wouldn’t tell you to do anything that I already haven’t done. I had to choose to, or NOT continue wasting time and money (that I truly could not afford) going to Neurologist and Neurosurgeon: one after another until I saw ALL the best ones in the best NYC Hospitals (before all the great ones left starting in 2015 or so) and the BEST THING any could tell me was “Surgery to remove your XL Thymus Gland is a LAST CHOICE option, because the chance of just surviving the surgery is far less than 50/50!”. So, NO MORE DOCTORS FOR ME SINCE 2011 (except to get needed meds)!

So as I get worse and worse, I just don’t think about it anymore. AS LONG AS MY PAIN IS KEPT BEARABLE! I live my life from bed with my laptop doing things that make me proud of myself- helping as many strangers as I can (only for free) with all of the skills I’ve picked up in my life with my 130 IQ. I have nothing to prove and nothing to regret. I’m just doing & being without giving it much thought. I have less stress now than ever… yet ironically low stress is NOT helping lower my pain!

I wish you all the best from my heart. Make the choice in peace.

Wendy Paley

Dear Ellen,
I read all of your posts on the national pain report and want to say that you are an incredibly good writer. I also want to say how sorry I was to read your recent post about the bad news you were given at the dental specialist office in Ohio. To hear that there was a problem now with the C-4 fusion you underwent only a year and a half ago must’ve been overwhelming, to put it mildly! I have been in chronic pain for five years since undergoing surgery in my sacrum resulting in permanent nerve root damage. It has made it impossible for me to sit or drive.

My point is that only one surgery took away all normalcy in my life and you have undergone 24 surgeries. You are an incredibly brave and strong woman! My heart really goes out to you. I will be praying for you to have a miracle whereby you will not have to undergo a 25th surgery. Take good care of yourself.
Sincerely, Wendy Paley

Walter Strickland

Ellen, thanks for sharing this with us and I am praying all will turn out well for you.May God bless you and your husband in this good fight.And may God bless your family for being willing to assist you in this way, your new Home next to one of your son’s.Some families won’t do that, for reasons I cannot understand.

Randy

I had oral surgery last year while I was being tapered off opoids. I don’t suggest it to anyone cause they can’t give you anything for pain. The most miserable 3 or 4 weeks of my life. The pain was sharp, deep, throbbing and lancing shrrpley into my jaw and sinus area. I tell this story to tell another. Years ago I suffered from TMJ. Jaw clicking and clicking every time I opened my mouth to talk eat chew very painful followed by migraines. While being treated with opoids for my other pain back, neck, wrists , shoulders, sciatica and neuropathy. My TMJ WENT away. When I had the dental surgeries last year. The dentist popped my jaw out of socket causing my YMJ to return worse than ever. Luckily the migraines have not returned.. I’m 65 yoa and am a CPP. Who has no future relief in sight. Enjoy the time you have because we never know what time remains.

Laurie

Annie,
It’s not so bad to feel sorry for oneself every now and then, you wouldn’t be human if you didn’t.
Being all positive all the time is for others, not you.
I understand because too much complaining is never fun to listen to; it can/will drive others away.
I’m facing similar horrors, myself

Researcher

Dear Ellen, you should not be getting fusions, they’re part of the messed up medical system in this country. ADR (artificial disc replacement) acts exactly as a disc would, never wears out, & doesn’t cause other levels to collapse.
1 level, possibly 2 levels in the lumbar are approved in the US. In Germany, they have been doing cervical ADR’s for 30 years.
I have a friend that had multiple cervical ADR’s over a decade ago & has had zero pain or problems since. I’m not sure how he got insurance to pay, except it’s 1/3 of the cost of a fusion.
I’m sorry if it isn’t feasible for you to get ADR. It highlights everything wrong with the healthcare system in the US. I need ADR myself, lumbar & cervical. Best of luck to you. Peace&love

Timothy Mason

Good article. Informative. Real life story. Maybe I will post mine some day.

Janis

Wow! 24 surgeries! And you still take the time to write here, write books and advocate for us! You are so strong. Those break down moments are definitely not a sign of weakness! You are such an inspiration. I’ve only had 4 surgeries and do not have to deal with a tenth of what you do and you are so much more productive than me! You’ve shown me that I need to leave my pity party and move forward. Be grateful for what I can do and stop dwelling on what I can’t do! Thank you and please hang in there! You’re in my prayers!❤🌹💙

Gail Honadle

Where do we find Spine and FMS specialist? There seem to be none. All I get is Your Spine will crumble if we touch it, FMS even though there are 12+ Million of us is not well understood except by those who have it. Add in more autoimmunes and it just compounds it. Doctors have abandoned me. I’m down to just the Neurologist and the ENDO. Gastro only sees me if he’s forced to. Primary doesn’t want to write the scripts he has me on. It’s a circus where the merry go round doesn’t stop. The spine continues to degenerate, no fixes, no help, that wheelchair is coming. The Pain never ends. I’ve waited 30+ yrs for a FMS treatment that might work, all I got was 15 drug reactions, with Valium only partially controlling the pain. Now the CDC wants to take that away. It’s a muscle, nerve, and seizure med, not a Psyche med.

I am inspired by your perseverance and courage. I hope the magic continues for you.

Jeannette mastenbrook

My thoughts AND prayers are with you Ellen . Thanks for sharing your story.