Another Spinal Surgery Now Scheduled for November 23, 2019 at Castle Rock Adventist Hospital just South of Denver
The two surgeons who have been working on my spine have opposing opinions about what is needed to fix me. So I am confused about the reality but choosing to endure yet another surgery with the hope that at long last some stable healing place might be reached.
Dr Choi will open up my lower back and see if the screws and hardware are still loose and preventing proper bone fusion from happening. Anything could happen. If he finds the lower two lumbar vertebrae happily fused to my sacrum then he will just take out all the titanium braces and close me back up with hopes that my nerves will be less irritated down there. But if he finds that the bones are still unfused then he will replace all or parts of the hardware with fatter screws inserted at proper angles to avoid their breaking through the bones again. Then I should be able to heal properly.
This surgery won’t address the ongoing pain in my neck which persists after two cervical surgeries. I can only hope that healing is gradually happening there.
Last week I went out to a coffee shop for a few hours… felt like I was doing better. Unfortunately the pain storm which followed lasted for almost a week and the message seemed clear that something is not right.
I feel like there is only so much life force left for undergoing these surgeries and then healing out of them to a better place so it is all a gamble and quite confusing. I wish I had more of a “beginner’s mind and body” to approach this with but I don’t. I am all too aware that what surgeons will call success simply because I am not paralyzed may not really resemble what a patient, like myself, might call success.
But the saving grace is that I still feel comfortable in my soul skin… that whatever happens I have had a marvelous ride through this lifetime. And that, of course, is thanks to all of you! My companions on this miraculous journey! So I still have so much love to send out! Thank you! Thank you! Thank you!
Scroll down to see images of all the crazy titanium hardware I’m currently carrying around!
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Titanium Screw Found Loose in My Lower Spine on Aug 21, 2019
Reaching behind my back just a little too far with my right arm I felt something unzip inside my lower backbone. Pain shot up to a 9 or 10 which is the screaming kind and after an hour or so there was no alternative but to go to the Emergency Room here in Boulder.
An xray revealed that there was a loose screw on the right side which was supposed to be holding the titanium brace to my bones at the bottom of my spine. A super-morphine called Dilaudid given intravenously did the trick and the pain began to subside back down to below the screaming and moaning level.
After 3 days they released me from the hospital with a few pills of Dilaudid and a prescription for more but, since it was now the weekend, it was not possible to fill that prescription in time to stay on that drug so I have been forced to try and make do with my oxycodone back here at home while I try not to accidentally reach too far and re-create that awful unzipping again.
Dr Rajpal, the surgeon who had done the first cervical surgery and then the lumbar surgery appeared for about 3 minutes early one morning in my hospital room and said he wasn’t worried. “Well since I’m the one in extreme pain I guess that leaves just me to worry about it, I guess… huh?” I asked him. I was feeling very confused and wanted more information.
He squeezed me on the knee in a re-assuring way and left the room. I did see his physician assistant the next day who seemed perplexed and assured me that there would be some follow-up to come. There hasn’t been any. I don’t know what to think except that those surgeons must be living in such terror of legal actions that they have just gone mute.
So I asked Dr Choi what to do. He is the surgeon in south Denver who just worked to make the improvements described below on my neck surgery only a few weeks before this loose screw problem surfaced.
Dr Choi ordered an MRI and a CT Scan and let me know that he would prescribe a bone-growth stimulator for me to wear for a few weeks but that it was not likely to really fix the loose-screw problem. He eventually gave me the rather bad news that he would probably have to completely re-do the lumbar surgery in order to both fix the looseness and also stimulate the vertebrae to grow and fuse together so that my spine could eventually have some strength again.
Meanwhile I have been gradually experiencing a bit less cervical pain in the aftermath of the July 15th surgery but have only been able to try and go out a very few times so far… mostly just to see doctors. Going to events where I might have to turn my head in order to see what is going on are still just too painful for me. And the numbness in all four of my limbs is now so extreme that walking or moving very much is also just too painful.
So I am listening to a lot of audio-books while lying down to take the weight off my spine… and trying eat well to gain back some of the 30 or so pounds I have lost.
And I am trying to be as creative as possible: writing books on my laptop. I finished and published my autobiography and a book about how to play the Egyptian reed flute known as the Nay. Now I am working on about five other books including finally publishing one I spent about 7 years writing between 1968 and 1975 which teaches how to speak the Inca language, Quechua. The creativity is my best pain-killer. Playing music is still way beyond me. Just too painful to try and move my arms that much!
I don’t know when I might finally be able to re-join you all and perhaps attend some events out in the community rather than requiring that you all come and visit me! That would be very nice after a year and a half of being condo-bound!
Meanwhile, thanks to all of you, Kristina and I have been able at times to pay off the serious debt… thank you so much!!! But now the dental bills… tooth extractions… root canals… crown replacements… along with auto repair bills and other medical costs are pushing our financial situation back into the red and going below zero again…
Toward the end of October I will receive Dr Choi’s next recommendation and it does sound like another very invasive spine surgery may well be coming… At times it feels like my core life strength will just run out of ooomph at some point and I just won’t be able to ever really heal… But I will continue to gamble and hope as long as I can…
I am not a Person… I am a Tribe! Very interesting discovery…
And it’s thanks to Kristina and to all of you that I have made it this far! I am always always always feeling the love! Love love love!
Cervical Spine Surgery Completed on July 15th, 2019
Those nerves coming out sideways between the fused vertebrae in the middle of my neck were supposed to be round like spaghetti… instead they were squashed flat like noodles… And as they removed the bone spurs the nerve transmission monitors showing those nerves coming back to life without having suffered permanent damage…
Dr Choi performed that laminotomy on both sides of my neck… right in the places which have been plagued with pain for the last year.
He then moved down and, still working through a long incision in the back of my neck, removed degenerated bone and disc material between my lowest cervical vertebra and highest thoracic vertebra, placed titanium rods with long screws to hold things in place and to give room for additional fusion to happen over the next few months. This effectively fastens my neck vertebrae to my rib cage for additional stability. He then performed a laminectomy by removing pie-shaped sections of bone over my central spinal cord to relieve the squishing which had been happening there as the “anterolisthesis” or slippage was progressing.
They did the surgery on Monday and sent me home on Wednesday so here we are, me and Kristina, getting by again with help from so many wonderful friends and family!
The not-so-good news was that my bones are softening… osteoporosis… so I’m supposed to get additional instructions from my primary care physician regarding what to do about that.
It will be difficult to evaluated the effects of all this for several weeks to come but I have reason to hope to land on a platform from which I can finally heal!
Meanwhile thanks to high doses of pain meds I can get through and be a little bit active too.
It makes me cry as the messages of love and support flow in through all the modern messaging and social media tools! Love love love!
Unfortunately the messages of love and support are not the only feelings making me cry… yikes! It’s 2 weeks post-surgery now and I guess this posterior cervical fusion surgery is living up to its reputation for being the most painful spinal surgery… but as we all know, pain is not really something words can describe… but… yikes….! hoping for some remission sometime soon… still on max pain meds… but most of all… thanks and love love love!
Just got xrays showing new titanium hardware added into the back of my neck. Scroll down to see.
New Titanium hardware placed on July 15th, 2019 to fuse C7 to T1
Side view of new Titanium hardware placed on July 15th, 2019 to fuse C7 to T1
Cervical Spine Surgery Rescheduled for July 15th, 2019
Dr Choi, the surgeon, with whom I met on June 20th, is feeling satisfied and willing to proceed now that I have met with the “pain psychologist.” Dr Choi told me that he feels confident that, whether I find 100% or 50% relief from the nerve pains generated by the tight passages in the neuroforaminal pathways in my neck, he is confident that I will be pleased with the results. For a while it seemed uncertain that we could stick to the plan because Dr Choi himself is apparently himself scheduled for some kind of surgery. They were talking about having to postpone mine until late October. But now, July 9th, I received confirmation that we will proceed. That is good news for me because the pain storms I have been experiencing have been very challenging.
June 17th Cervical Spine Surgery Postponed
Dr Choi, the surgeon, is expressing concern about my making it through what he calls the most painful spinal surgery of all… So he wants to talk with me about it more next week… and have me meet with a “pain psychologist”…
June, 2019 Update – Another Cervical Spine Surgery June 17th, 2019
Dr Gronseth, at Spine West here in Boulder, told me about 3 months ago that he had been looking again at MRI images of my neck. “I’m concerned that there are nerves getting pinched in dangerous ways… I think you should go see some other neurosurgeons… go see Dr Choi in Denver!”
“Yes it feels like I am not healing… but getting worse… So I will go see Dr Choi and whoever else you might recommend at the University Medical School Center in Denver to get yet another opinion.”
“Go see Dr Choi and Dr Witt!” he advised.
So now I have sifted through opinions from those two as well as updated opinions from Dr Rajpal who did the last two spinal surgeries on me.
It has been very confusing and complex but I am scheduled to give Dr Choi a chance to relieve pressures in quite a few places in the middle of the fused section of my neck (C7-C4). He will go in from the back and do a laminectomy to take pressure off my spinal cord, remove bone spurs which are pressing on the foraminal nerves which go out sideways between the vertebrae and also go ahead and fuse C7 to T1 as that joint has been slowly slipping.
Dr Choi gives me a 50% chance that I will emerge in much less pain. Other doctors suggest that if he says 50% he is probably privately thinking 80%.
This is promising for me as I have not healed. I am in pain levels 6-8 (on a scale of 1-10) all the time and am way too delicate. I can’t even sleep without accidentally re-injuring my neck.
Thanks to all the amazing financial support which we received last year during my 3 major surgeries (heart, cervical spine fusion and lumbar spine fusion) Kristina and I got out of debt and up to zero in our bank account for quite a while. But I just can’t get out much and do things so now we are slowly sliding back into debt again.
I have been able to sit at my laptop (which is held up at just the right height and angle) and do some writing and publishing and work for Musical Ambassadors of Peace, our non-profit. Creativity is my best pain medicine although I have also been stuck with pain medications for the last year… just too painful to get completely off them.
I feel like my vitality is good and that I could exercise my way back into a more active lifestyle if my spinal cord wasn’t being constantly and painfully pinched! So I am putting my eggs in Dr Choi’s surgical basket and hoping hoping hoping for the best! I still hope that after a few more months of post-op healing I’ll be able to see you again in person out there in the world! Sending Love Love Love! And Thank You Thank You Thank You!
Our musical tribe coordinated a fundraiser for us on May 27, 2018… It was amazing! Thank you! Thank you! Thank you!
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March 2019 Update
Hoping that pain levels will subside by this summer to the point where I might be able to get out… drive car… visit friends and attend some events…. We shall see!
I feel excited now to actually be emerging from some long kind of dark night of the soul where-from I sometimes felt like the pain was just driving me to want to exit this body and leave the planet… I lost just a little over 30 pounds last year but now am slowly re-gaining some weight and a little strength… And every day I can feel the excitement of future possibilities to emerge back into a more creative lifestyle again!
And every day I feel such deep gratitude to community and friends and family for the huge outpourings of love and support which have been flowing my way for the so long now! Wow! What a testimony to love love love!
Lower back pain was exacerbated on New Years Eve when I stupidly tried to pull on a pair of boots so that, for the first time in a year or so, I could actually go to a friend’s party! Big mistake! Although the surgeon says I will continue to heal I definitely tweaked something in the lower spine surgery.
The neck surgery is 8 months behind me now but still very painful. Again, the surgeon assures me that nothing serious is wrong… it just takes up to two years for these post-surgical pains to subside!
Thanks to the urgency of the two spinal surgeries I never had a chance to re-build strength after the open-heart double-bipass surgery now a year ago… So I am still very slow and weak… But very gradually gaining strength… Having inherited RLS – Restless Limb Syndrome – is a disaster… any of you who have that know what it is to be a “night walker”… no rest… no sleep… no healing… last night, for example, I got only one hour of sleep and was walking in circles around in our condo for hours… endless creepy-crawly nerve feelings and spasmodic convulsions through legs and arms and torso…
I am still on opiates, muscle relaxants, a beta-blocker, levadopa, tylenol and intra-venous Magnesium Sulfate – all of which make me extra exhausted and probably even more sensitive to pain.
I began working in mid-February with a Pain Management Doctor and with Dr Gronseth at Spine West with hopes to finally be able to get off of some of these drugs! But it won’t be easy and if current pain levels persist it may be too soon to try.
Also in February I have had steroid injections in both my neck and lower back… They cause major pain flare-ups at first but then subside into better places.
Dr Gronseth will also try to locate the specific nerves in my neck which are causing so much pain by numbing them with Lidocaine one nerve at a time until we find them. He then plans to do a radiofrequency ablation and kill those nerve ends so they simply stop sending out their signals of pain.
The pain management doctor also injected multiple muscles in my upper neck with another anaesthetic as a prelude to possibly injecting botox which apparently helps deaden nerve sensitivity for a few months.
I am also studying the ways our brains selectively transmit pain which is making me a little less fearful. It seems that pain is a strange critter. But most people working with long-term pain have things like fibromyalgia and that’s not my situation. All my pains come from specific injuries and are not mysterious.
So… it’s still rough and discouraging at times… Kristina never stops caring for me and I feel cradled in the love of so many others… So I am hoping that after a few more months I will become more active again.
As it is I have been able to work on my autobiographical “Love Without Borders” book and do occasional online work for my non-profit Musical Ambassadors of Peace… Without creativity I would be seriously unhappy…
I continue to send streams of love and gratitude to so many friends and family who keep me sustained in so many ways. Thank you! Thank you! Thank you! Your donations and fundraisers actually brought our debt level up to zero for a couple of months… now slowly sinking again… I still have my online publishing business up and running at gldesignpub.com and when I have more strength I will work to build that up with more products which will hopefully eventually bring in more income… I thrive on creativity and maintaining connections with beloved… and I do mean beloved… friends all over the world… All for now… Scroll down for medical photos, more medical history and other info… love love love… Cameron
November 20, 2018 Update
Slowly getting off high doses of pain medications so I am more myself again for at least part of the day. Now able to go for short six-minute walks about 3 times a day. I feel like the nerves are less pinched and muscle control is slowly improving although the numbness is still there especially in my feet. I am so appreciative of all the wonderful folks who have been coming by with food and love!
Cameron Health Update – Lumbar Spine Surgery Completed Nov 1st, 2018:
My spine surgeon says he was 100% satisfied with his 5-hour operation to install titanium rods and screws to hold my lower back together. He fused the lowest 2 lumbar vertebrae to my sacrum by removing old collapsed discs, including the one injured by the chiropractor, and replacing them with plastic spacers filled with my own freshly harvested bone dust! This bone dust and plastic mixture will hopefully harden into bone during the next year and my lower back should become strong again while giving my nerves room to function properly without pain. He fused 4 of my cervical neck vertebrae last May using the same techniques and xrays show that the bone dust is slowly hardening into bone. The nerve pains can take a year or two to subside while numbness and swallowing malfunctions gradually improve.
Only 1 in 2 Million patients get to wake up during surgery:
Two hours into the surgery the breathing tube they had inserted in my throat developed a leak: some kind of crack which had to be fixed. So the surgeon paused his work while the anesthesiologist and three other doctors crawled under the operating table to work on this problem. She asked someone to tend to the IV pump which was delivering my anesthetic because it was beeping an “almost empty” warning and she could no longer reach it. Unfortunately no one heeded her call and I found myself suddenly wide awake, suspended upside down, halfway through the surgery.
I struggled with all my might to move a finger or to make a sound to let someone know that I had woken up but discovered that I was unable to move. I could feel the fractured breathing tube protruding from the left side of my mouth and what felt like additional tubes beside it. She later told me that those “additional tubes” were her fingers frantically working in my mouth.
I had resigned myself to going through the rest of the long operation in wakeful consciousness when she managed to refill the empty IV pump and I have no more memories of anything after that until I woke up later at the proper time. I hadn’t experienced additional pain because, although my back was flayed open at the time with a 5-inch incision, the surgeon had paused his work. He had to wait for about 45 minutes and consider the emergency measure of temporarily clamping me shut so I could be rolled over and a new tube installed with me lying on my back. Fortunately the anesthesiology team succeeded in replacing the tube… with me still lying face down… and the surgeon was able to resume.
The operating team also had to call in and wait for a urologist to try and correct a misplaced urinary catheter which was bleeding profusely from my bladder. Apparently an inexperienced nurse was at fault for that problem and the hospital is revising some protocols to make sure that doesn’t happen in the future with other patients. I woke up still catheterized and I remained attached to my portable urine bag for the next 5 days… something else limiting my motion, requiring extra attention and creating additional discomfort… a burning sensation in my bladder especially sharp when lying down… oh well… it’s gone now… But they don’t come to you to fix it. I had to steel myself to stay awake, ride to a doctor’s office, wait in line, fill out paperwork at a front desk, go down the hall and up an elevator to wait… in order to finally be relieved of the catheter and bag. I was painfully exhausted by the time I finally got back home. When I got sick in Egypt a modern MD with his assistant and cases full of equipment came to see me in my hotel room for $5… What’s wrong with this picture? Am I just whining now?
In spite of these delays, I was told that all went well with the back surgery. I enjoyed a 24-hour “honeymoon” after I woke up thanks to the administration of long-acting morphine directly into my spinal fluid. When that wore off I increased my dose of oxycodon, an oral opiate, from 2x/day up to 8x/day and I am grateful for that.
When I realized that I had survived this third major surgery this year and that the prognosis was good I spent much of the next couple of days shedding tears of gratitude: for the amazing medical techniques available these days which can potentially give us elders some additional years of quality living… yes… but mostly I felt long intense waves of gratitude for the hundreds of friends and family who have been helping Kristina care for me and nurture and support me in countless ways all through these last months… or years… of medical struggling…
My son flew in again from California for a few days to be here during and after the surgery and my daughter will continue to do what she can. But the amazing network of lifelong friends is truly some kind of proper miracle which I am told is rare in these modern times. Our connections deepen with time and sharing music and dance performance can transform certain friendships into this amazingly special magic love brew. Thank you all so much! Love love love!
I spent two nights in the hospital and now have been moving slowly with a walker and a back brace back home in our condo. Many of you are coming by to visit and bring wonderful food! Thank you thank you thank you!
Spinal neck surgery now scheduled for May 10th… 2018… Then I will continue to try and heal out of both surgeries… Cardiologist says by Christmas I should have some strength again. Right now I can walk slowly for fifteen minutes twice a day… on a good day… Then may need a day or two to recover… And if I don’t bend my neck by looking downwards I’m less likely to trigger pinched spinal cord symptoms… such a delicate balance… but if I can get through the neck surgery and build strength maybe I can have another decade of creativity… Of course I may need spinal surgery on lower back too… but I’m hoping for less urgency on that one…
Feels like I’m losing control of my arms, fingers and more… Cervical spinal surgery may have to be done sooner rather than later. I was scheduled for that on emergency basis back in February but it couldn’t happen because of heart blockage… Symptoms from neck problem are getting worse fast… Better do something… Spine surgeon says I should go to ER to get more MRI images…
Just had open heart surgery on Feb 6th, 2018… to fix a blockage in an artery… They say it is very rare… One in two thousand… for someone like me to have a blockage… since I don’t have heart disease…. almost no plaque… it seems that the last ablation I had last June to try and fix an arrhythmia problem caused inflammation in a small but critical spot and the subsequent arterial blockage…
The doctors had all been agreeing that the chest pain which I had been experiencing for months must have been caused by cervical spinal stenosis… They said it was so severe that I needed spinal surgery asap… So I went ahead and scheduled it…
It was during the preparations for the spinal surgery that they discovered the dangerous heart blockage… surprise…. The Operative Report says that there was 99.9% occlusion of the left anterior descending artery (LAD) which is a branch of the left coronary artery. Occlusion of this artery is often called the widow-maker infarction due to a high death risk. The LAD typically supplies 45-55% of the left ventricle and is therefore considered the most critical vessel in terms of myocardial blood supply. This means that if this artery is abruptly and completely occluded it will cause a massive heart attack that will likely lead to sudden death…. They say that I was amazingly lucky to have survived for months with this blockage.
Side Image of new Titanium rods and screws in my lower back. Yes, they are a permanent part of me now.
New Titanium rods and screws in my lower back – rear view.
I went to the ER on October 20, 2018 – couldn’t stand the creepy-crawly nerve pains… But the Spine Surgeon of first choice for me hadn’t had any cancellations… So I remained scheduled for Nov 1st… It was hard to make it through those days and nights but I remained hopeful that the surgery would give some immediate relief even if it would take a couple of years to fully heal from it… Thanks to everyone for staying in touch! …and encouraging me to hope for the best!
Over the last few months I was rapidly losing the feeling and some motor control of my legs and lower abdomen. I was running the risk of permanently losing control of my legs and bladder and bowels.
I was hoping that perhaps by the beginning of 2020 the bones in my back will have fused and become strong and independent of the need for internal plates and rods and screws. All that hardware, however, once in place, will remain inside me for the rest of my life.
Two ablations completed 2016 and June 2017 to fix ongoing cardiac arrhythmias.
Open heart double bypass surgery completed Feb 7, 2018 to repair arterial blockage apparently created by last ablation attempt.
Cervical Spine Surgery Completed on Thursday, May 10, 2018
I had 4 neck vertebrae fused and 3 discs removed and replaced with plastic spacers filled with my own bone dust… Hopefully a year from the now the bones will have grown strongly together… I had to wear this hard collar continually for the first six weeks… now I wear it only when I feel neck muscles giving out and pain increasing.
They inserted a titanium plate and fastened it to the front sides of my neck vertebrae with 8 screws… That will hold everything in place during the next year while the bone fusion slowly happens. I wear an electrical field “bone growth stimulator” for 4 hours every day.
They said surgery was a perfect success except for a little post-operative bleeding which temporarily paralyzed some of the muscles in my right arm… It has now been three months since surgery and my right arm motion has slowly been coming back.
Three months after the surgery I am starting to be able to function a little bit again but still too weak to leave home for more than an hour or two at a time.
The severe symptoms of numbness, trouble swallowing, chattering jaw muscles seem to have been lessened by the surgery and they say they will continue to subside… yay… it was getting extreme… emergency status… that’s why they plugged me into a cancellation in their schedule and did it… I am grateful for that… now I have a chance to heal… but it is slow and the doctors remind me that it can take months for the nerves to recover… probably a year and a half… and I am still on muscle relaxants and pain killers and other drugs which make me very exhausted… every day is still quite an effort…
After that… we shall see… my cardiologist predicts that by sometime in 2019 I will be healing strongly out of all three surgeries…
I am so deeply thankful to so many friends who have been coming by our condo regularly to help care for me and ease the burden on Kristina… I somehow ended up in the most amazing bath of Love! And so many have also been chipping in their donations to help get us through all of this! Love love love! …is all there is… See the Colorado Fundraiser page! Or scroll down for link to the fundraiser event page!
Thank you all so much!
Upper arrow shows location of severe stenosis at L4-L5.
Lower arrow shows locations of collapsed disc and cyst at L5-S1.