Should I have non fusion fixed?

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Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/23/2018 11:53 AM (GMT -6)   
Hi All,
I am back. Since I was last here I have had a pain pump implanted, which is working on my leg nerve pain well even though I am not dialed in yet with my dose.

I had a C4-7 ACDF in 2014 but no fusion at C6/7. I still suffer from terrible neck pain, weird pains in my spine etc. The neurosurgeon who put my pump in took new imaging of my neck. The non fusion I have at C6-7 is worse (more space between the bones) and now because of the micro-movement of the psuedoarthrosis, bone spurs are forming and growing into my spinal cord. Neurosurgeon says if I do nothing it will only get worse and require a more complicated surgery down the road. He wants to go in posterior and put rod and screws in from C5-7.

My pain doctor says I will be trading one pain for a new one. It will resolve my symptoms but will not leave me pain free.

You all here have had similar experiences. Looking for advice and input. I am so scared to have another neck surgery.

Hope you all are hanging in there - TN
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 8/24/2018 12:03 AM (GMT -6)   
Hi TN, Well your pain Doctor might possibly be right about trading one pain for another. The posterior approach is more painful and definitely has a much longer recovery time than an Anterior approach fusion (ACDF) but with mine with the rods and pins the pain eventually went away. If you don't have the surgery it sounds like it will only get worse. Not to mention bone spurs can produce nerve root and even spinal cord impingement can't they?? That could possibly even lead to more problems down the road! Is it worth taking the chance? Only you can decide that!

You know TN I have a pain pump too and it does great at controlling my lower back pain and sciatica pain and so far with it I've been able to avoid a L5 discetomy and fusion as the surgeon told me when I had the Foraminotomy a at L1 thru L5 that the disc at L5 was shot and needed a Discectomy and Fusion. But the upper spine is a different story and personally with everything I've been through with my cervical spine I'm just not not willing to take a chance and let things go! For me if it's in my neck I want it fixed! I just think there is way to much to lose when something goes wrong with the upper spine verses the lower spine!

I know it's a difficult decision and I don't envy you having to have to make it!!! TN I do wish you all the BEST! Good Luck to You!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/24/2018 1:17 AM (GMT -6)   
Thanks White Beard,
It helps to know that your posterior neck surgery did reduce your pain. I know it will be a long recovery. It was tough with my ACDF, I can’t imagine it being worse. But you are correct, if I do nothing it will get worse. I have symptoms that effect my balance, spine pain etc. that may also be from my neck. I told the neurosurgeon I will have it in January, but doing my homework in the meantime. The neurosurgeon also said at some point they may have to deal with C2-3 because of facet arthrosis. But they wouldn’t be able to fix that area if I am not fused.

I have heard that the posterior approach messes up your muscles and you get more spasms even once healed. Did the surgery fix your related symptoms?

The pump has helped my nerve pain in my legs a lot. I am super sensitive to anything more than a 2% increase in meds so going slowly as we ramp it up. But I am sleeping 6-7 hours a night where prepump I was getting 2-4 hours of sleep because of the terrible burning pain all night long. I am thankful for the encouragement you and others gave me to proceed. Although I am still getting used to this giant metal thing in my abdomen.....

Thanks, TN
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 8/24/2018 10:16 AM (GMT -6)   
TallerNow:
Your situation is not an easy one.

The cervical spine, by natural design, is meant to glide and move. It is not meant to be fused and restricted with rigged rods and screws.

The problem with any cervical fusion is that the imparted segmental rigidity/stiffness leads to the transmission of gravity and load bearing forces to lower levels where there is natural movement. The lower levels take an undue amount of force - thr accumulayed sum of higher forces that are not able to be dissipated due to the surgically placed rigidity. Lower vertebral levels suffer and frequently develop pathology months or years later.

Rigidity is a nemesis and foe.

Rigidity and rods and fusion also lends to hardware failure. Bone needs regular stress to maintain density and resiliency. Natural movement and the strain-counter stein of ligaments and tendons aids bone health and remodeling. Hardware failure is one additional consequence of imposed rigidity of the spine. The anchoring peduncles and lamina are no longer patent. I have seen, first hand, screw and rods migrate from bone and it is not a pretty sight.

Failure of the fusion is also a real and potential consequence that would could become its own nightmare.

You have had a number of invasive procedures on the cervical spine. Be mindful of the body’s tolerance for repeated trauma. You could be in a worsened state then you currently are.

There are effects and consequences of the proposed fusion that are equally as concerning as your current MRI findings of bone spurring and pseudoarthrosis. Unless or until you have symptoms of true central
Cord compression and/or marrow edema of the involved vertebral body, I would place a “hold” on further invasive surgery.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/24/2018 11:09 AM (GMT -6)   
TN, I read your post last night & opted to not post immediately. I decided to think on it for a bit. One thing I hoped happened, that was WhiteBeard weighing in on your situation. Another person is Abilene. If I remember correctly she had a posterior fusion, at least this is what is in my mind. I am hoping she will pop on & see your post here.

I think my foremost thought is knowing what may happen if nothing is done. The spurring is a concern because of the potential damage, more nerve damage becoming permanent. The balance issues you are having, this is not good. The last thing you need is to take a fall. My other thought, is the age factor, we do not bounce back as quickly as we age. This is not a surgery I would want to put off until my 60's. I am thinking you are quite a bit younger than me. I turned 65 in June.

It is unknown what type of pain you will have after surgery. One thing we know is a surgeon can fix the mechanical issues. Whether or not a person ends up with chronic pain afterwards is something no one can predict, including drs. You could end up with a different type of pain, however, with that being said it may be something much more tolerable than where you are now. In other words, no guarantees.

I hope that WhiteBeard see's your questions about muscles & spasms. I do remember him saying that it was a good 6 months before he could say he was seeing positive results. The recovery in longer. But, he said he reminded himself there was a light at the end of the tunnel & it was going to take more time.

I don't know if you are on a muscle relaxer now or not. I am on 20mg of Baclofen 3 times a day & have been quite a few years. I know WhiteBeard is also on Baclofen. It has worked better for me than any I have ever taken. Just my own thoughts, I think you are on the right path by booking the surgery.

Keep us posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/24/2018 11:35 AM (GMT -6)   
Hello, TN! I have to admit I am cringing a bit (maybe that is the pain I feel!) reading your post. I just had the same surgery (ACDF C4-7) a month ago and while I think I am making great progress I do still have a lot of muscle spasms. I have not had any post-op testing done and won't for 2 more months. I have often had complications because of auto-immune issues and I am so sorry to hear that you have ongoing problems. The more surgery I have the less I think it is a solution but I always return to it if I think it is necessary to correct what can be corrected. Surgery seems to be evolving quite a bit and recovery becomes shorter and more efficient, hopefully.

Susie, or White Beard...not to hijack this post but do you recommend Baclofen over Robaxin? I am new to this muscle relaxer having switched from the dreaded Soma.

TN I wish you the best. These decisions are always so difficult as there is no right answer. I will be following your progress!

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 8/24/2018 1:30 PM (GMT -6)   
Hi TN I had allot of pain and neck spasms foe a good little while after the surgery, recovery was long and painful but in the end the results made it more than worth it for me! Yes it did relieve my symptoms I was having excruciatingly headaches at the base of my skull and down my neck and it totally relieved that pain once I got through the recovery period, that also includes some PT after several months of healing! But TN I feel the end results were well worth it!!

One thing I might note here is I have major problems with severe muscle spasms, and I get them every where in my body,, from my jaw to my hands and fingers and my legs and feet and every where in between. Some doctors say its all from my spine others say it is something else??? The one thing that seems to have helped me the most after trying a whole host of different things including medications. I was put on Baclofen many years ago and was steadily increased till they found a relatively effective dose (I take 30mgs every 8 hours) it does not totally relieve me of muscle spasms but for the most part it has greatly reduced the frequency of them!! I seem to react allot differently to allot of medications than what most people do, as an example Baclofen does NOT make me sleepy or drowsy or anything, but neither does Benadryl, or most pain meds! I've said this many times in my post that Baclofen has been a real Godsend for me!

Darla I think my above paragraph is an answer to your question. Robaxin was never all that effective for me. But we all react differently to different medications.

TN did you get the PTM with your pump?


Wish You WELL.........White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/24/2018 3:45 PM (GMT -6)   
Thanks, White Beard!

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/25/2018 1:33 AM (GMT -6)   
Thanks All for sharing your thoughts and experience. A few clarifications. I am 60, so waiting a few years until things are worse and for a more complicated surgery may not be the best idea?

The main symptom I want to go away are these mind-bending-fetal-position-can’t-talk-or-move cervicogenic headaches I get from moving my head too much (social occasions, looking around at a store or on a trip, etc). These keep me from traveling or doing anything because I have ruined many occasions where I end up in a bad way, sometimes even vomiting. My other symptoms include daily neck pain, tingling down both arms, weakness (drop things) and sometimes severe pain in left hand, crawly feeling up my spine, burning in upper spine, clumsiness, and difficulty walking. It helps when I occasionally wear my soft collar, and most of the time when I talk to people, or do things I hold my neck with one of my hands.

I almost never have muscle spasms so have no need for muscle relaxers. Occasionally my lumbar spine goes out, and then I need them. I tried baclofen after my cervical ACDF but it didn’t help. I know they can add it to my pain pump if I do need it. All my issues are nerve related; pain, tingling, burning, numbness.

I do worry I will come out worse, but these severe episodes limit me so much. I have had two other neurosurgeons say I need the revision, an osteopath, and pain doctor. The fact that it is getting worse in the past two years (larger gap between bones, bone spur development, and now more than 2mm anteriorlisthesis) makes me think it won’t be too long before I may be forced into surgery.

White Beard, it is encouraging to know that your severe headaches went away. Susie, thanks for your input, Darla I didn’t mean to panic you (they didn’t find out I had a nonfusion until 2 years post op), Seashell I appreciate your input but my first fusion was to keep me from paralysis after a bad car accident my spinal cord was pinched at several levels, I don’t have much ability to move now but I don’t suffer from muscle spasms, my “broken neck” gets real mad when I do try to move it too much (my body is trying to stabilize my neck by forming the spurs), and I was told I do have edema. But I hear ya, and have the same concerns. Though wondering why you mention strain counterstrain? I do hope Abilene weighs in, she had a posterior fusion at the same time I had my anterior fusion.

Keep your thoughts coming. Thanks 🙏
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/25/2018 1:42 AM (GMT -6)   
White Beard, I don’t have a PTM yet. I am trying to ramp up my dose of morphine, I cannot tolerate more than 2% increase every two weeks so they said not yet on the PTM. I am only at 0.3mg/day, and still taking Norco.
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/25/2018 6:43 AM (GMT -6)   
TN, I suspect you will be hearing from Abilene before long. She had emailed me a while back that she was having some issues here at the forum. I did some checking & could not find any problems. I shot an email to her yesterday & heard back from her.

Gee, time has flown by. I still had you in your 50’s, lol. But hey, that’s ok too.

It’s a mixed bag it seems when the drs allows the use of a PTM. Some want the patient on a stable dose & others would rather the patient use it right away. Personally, I think right away would give a better idea of how much is needed. They program how many bolus’ per pay. Maybe I need to hang my shingle out Monday, lol.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/25/2018 6:50 AM (GMT -6)   
Hi, TM. I had to laugh about not panicking me. I do 'alarm' easily but I have had so many things take unpleasant turns I do tend to prepare myself. You have been through so much! I am sorry for all you have had to endure, and still face. Just as a thought...Have you tried Gabapentin for the nerve-related headaches? I never tried it until I saw my NS to determine if I needed the 4 level ACDF and he started me on it. I really like it and find it very helpful. It is not a sub for other meds maybe but I thought it might be something to assist you?

I would like to ask you a question if you don't mind. I am still almost 5 weeks post-op so I expect ups and downs but I am having really bad pain in my left scapula. I have had trouble sleeping the past few nights from it, no matter what I take. I feel like moving my arm can slightly dislocate it...I had that looseness before the surgery as well. I can't tell if it is a joint issue (if that is a joint) or just a nerve waking up. Or muscle spasms. Would you please let me know if you have experienced anything like that? If not I will post it on my ACDF thread.

I hope today is a good day for you, TN. The headaches sound crippling as I am sure they are. I would personally have a surgery that seems necessary. And this one might be.

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 8/25/2018 1:11 PM (GMT -6)   
Darla:
It is not uncommon for individuals post cervical surgery to have shoulder and scapular issues, mainly due to the expected co-contraction of musculature and immobility and guarded posture. The shoulder and scapular move in a coordinated symbiosis, referred to clinically as the scapulo-humeral rhythm. Scapular glide allows for the shoulder to move through its arc of motion. The scapula can become “tacked down” with restricted glide, which impacts the shoulder.

A personal trainer or physical therapist would be a helpful adjust for you when cleared by your surgeon. The children’s song, “The hip bone is connected to the leg bone . . . “ is correct. The body is interrelated. The cervical spine and shoulder and scapula are interrelated. One impacts the other.

Trigger points, areas of heightened muscle tension that feels ropy or nodular, is also common after cervical surgery. Trigger points can be aching and persistent in pain. Trigger points are common under the scapula, lying in the musculature beneath the scapula (rhomboids, trapezius, teres major and teres minor). Trigger point injections can be helpful as can be therapist guided gentle mobilization.

The shoulder is a suspension joint. Think of a clothes’ hanger. Stability of the shoulder depends on muscular strength of the rotator cuff, ligaments, and joint capsule.

Pilates might be a resourceful means of addressing your core strengthening and perceived laxity. Pilates has multiple benefits, especially for those recovering or frail in well-being. Flexibility, core strengthening, and restoration of normal patterns of movement are at the core of Pilates. Gentle Pilates, like gentle restorative yoga, are a valuable tool of self-care for those (including myself) with chronic conditions. You might want to discuss both/either with your medical team as appropriate to augment your recovery and pathway forward.

I maintain a firm commitment to daily exercise - including Pilates and yoga - as part of my self-care. Moving is simply part of my DNA and something I have always gravitated to. I was always most at peace and content during a long run. The rhythm of my breath and steps like a metronme. I encourage everyone to find a form of exercise/movement that feels “right” to them in mind-body-soul.

This weekend is the annual running of the Hood To Coast relay in Portland, Oregon. It is a relay running event that winds its way from the summit of Mt. Hood to the city of Seaside on the Pacific Ocean. I ran this relay for several years and have fond memories of friendships foraged and commaraderie. I remember having to run a 4 mike segment of the relay at 3 am. The stars illuminated against the blackness of the sky. Absolute quiet amongst tall evergreen trees. I never felt more alive then I did at that moment.

As I deal with a body that I am sometimes at odds with, I continue to try to find simple activities or outings that help me feel “alive.” Recovering from any surgery is difficult. Especially several weeks out as acute healing wanes, aches and pains and fatigue persist, and people become more expecting that you be as good as new. Find a few things that help lift your spirits and recharge your emotional batteries. I treat myself to fresh flowers when I am in recovery mode. Daffodils are one of my favorites, a happy flower. A manicure or pedicure are also a treat that I give to myself. Treat yourself to something just for you as you as part of your recovery.
Karen

Post Edited ((Seashell)) : 8/25/2018 12:18:11 PM (GMT-6)


Abilene
Veteran Member


Date Joined Apr 2014
Total Posts : 986
   Posted 8/25/2018 8:18 PM (GMT -6)   
Hello TN,

We have been through so much together. I'm very sorry you are not much better by now.

I am doing well, very glad I had the surgery on my neck. I was not in such bad shape as many but I was getting there and avoided a host of problems, I feel sure, by having the surgery when it was first presented to me. It was a full year long recovery, at least. Physical therapy, when allowed, was wonderful. I would still like to go back to that same person for a neck massage. I would not trust anyone but a physical therapist to do that and the one who helped me so much has moved away. I am not bothered by muscle spasms. Maybe I was some in the beginning, but not so much that I remember them. Please remember that I've not had an anterior surgery, nor a failed surgery, so I don't have any way to compare with what you have had. I would only hope that you could find the relief that I have found. My story is still here if you want to read it again. The title is just like what is in my signature line.

I tell people I traded pain for a stiff neck and have no regrets. But actually I already had quite a loss of movement before the surgery. It's not a great problem now with back up cameras and mirrors. I avoid the strain of lifting but otherwise have very few limitations. I go to a gym 3 times a week at least and enjoy that.

Life has continued for us with lots of joy. We've added several more grandchildren and celebrated our 50th anniversary this month. I just turned 69, since we are telling our ages.

You have my very best wishes as you search for relief!
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea-update-it's gone after a 25 lb weight loss; Total Knee Replacement 2012 and 2017,Takotsubo Syndrome/Stress Induced Cardiomyopathy (Heart attack with NO Blockage) 2018.
Thankful for my husband of nearly 50 years

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/25/2018 8:37 PM (GMT -6)   
Darla,
You most likely have muscle spasms. You are very early post op so continue to take it easy. Don’t twist or raise your arms above your shoulders and definitely no lifting. I had muscle spasms post op for a couple of months and they gradually went away unless I did a movement my neck didn’t like. I used ice a lot, even at night. I found and still find that is the best thing for spasm and pain.

Give yourself at least 6 months to heal. And DO NOT do Pilates or yoga. I am sure Karen (no disrespect intended) knows what to do because of her training but for someone who doesn’t her level of training it is a really bad idea. Many healthy people are injured from those moves. It is good to walk at this point, carefully. And when the doctor gives you the go ahead you can start moving more. You will not want to raise your arms above your shoulders at all for a very long time (a year or more) since that will jack up your neck big time. I used to be a trainer and taught various fitness classes for years and as a scientist I understand human anatomy. I have seen many people injured from doing the wrong thing or the right thing the wrong way.

Take it easy and feel free to contact me with questions. You can also look up my thread.
Best wished for you.
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/25/2018 8:52 PM (GMT -6)   
Karen,
You and I must be close to each other. My son in law did the Hood to Coast. And I have run the Portland Marathon in my healthier days. Now I enjoy all of the beautiful things around me and create art that is excellent therapy for my mind.

I did not intend disrespect on my difference in opinion about yoga and Pilates on a post op four level neck fusion. It isn’t something I could remotely recommend to anyone who has had that surgery unless highly modified aa year or two post op, and under close supervision of someone who has extensive training. I used to teach those kind of classes long ago so I understand them. I also know it depends on body type. I have hypermobile joint syndrome and too much stretching is bad for me. I also saw your comment about strain counter strain. I went to that kind of therapy earlier this year after tearing another lumbar disk. It helped a bit at first then did nothing at all. And reading up on it I learned why.

If you are north of Portland I lead a faith-based chronic pain and illness support group you are welcome to join. You have a lot to deal with yet have a wonderful attitude. Believe it or not we actually have someone in our group with a type of bone necrosis.

The fall is just around the corner when the PNW gets to be brilliant with color and the cool crisp days are coming too.
Best to you - TN
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 8/26/2018 1:25 AM (GMT -6)   
Taller Now and Darla:
My discussion of Pilates and yoga was directed with the sense that Darla, like many with chronic health issues, is struggling with feeling that she can no longer trust her body. A feeling that her body has betrayed her and uncertain what a new ache or swelling may imply. Regaining a sense of trust of one’s body is a vital part of a functional recovery and reclaiming of one’s life. Yoga and Pilates can both be adjuncts to reach a place of trust with the body that is one’s home.

I made specific note for Darla to discuss the implications and timing of introducing one or the other - yoga and Pilates - with her medical team. I made specific wording of gentle and restorative as descriptors. There was no ill-will intention.

Gentle/restorative yoga and pilated can be lower extremity and torso in focus, excluding the upper body, in the case of its application for building body trust after ACDF surgery. Just as I modify my use of beneficial restorative yoga/Pilates with pathological fracture risk with AVN of my hips. The intended benefit: To see/feel what the body can do and is doing well to better experience the body as a friend.

ACDF surgery and it’s aftermath need not be overly exacting in its restrictions. It takes 12-18 months, as a general finding, for full fusion. With full fusion, many people can resume a wide range of activities. Obviously, each person has their own co-morbities and health history that must be factored in.

The intention of my post was to point of reestablishing trust with one’s body when living with a chronic health condition.

Thi Chi. Restorative yoga. Soaring crane. Each are based less on intense exercise and more on reconnecting and trusting the body as one’s home. Experiencing what the body can do to ease the grief of what may have been lost.

Ok . . . nuff said. No ill-will intended. More offered as a possible pathway forward.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 8/26/2018 1:42 AM (GMT -6)   
Taller Now:
I reside in Portland, Oregon. In The Pearl District, if you are familiar with the city.

We are both Portland Marathon finishers. Two peas in a pod. Like you, I was a long distance runner in healthier days. I had no natural skill with a ball for anything like volleyball or tennis. I found that I was light on my feet and could put one foot in front of the other, in perpetuity. I have no doubt but that the years of distance running that I logged have buffered my otherwise downward health trend. Still, loss of health is a sobering reality, as I sense you expeeience as well.

I do the best that I can do. Because, really, what is the alternative?

I hope you get to where you need to be with a bettering of health and well-being with the upcoming cervical fusion. Sincere wishes for success.
Karen

Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/26/2018 7:39 AM (GMT -6)   
Good Morning, TN, Karen, Abilene, Susie, White Beard, and company!

I have a lot of thoughts/comments/questions to each post but I wanted to do a quick comment for now. More later I am still thinking. I have no medical team, really. I have a few dr's. I thought about going to Mayo which is not all that far from me here in NE FL but I keep having surgeries and have to be off my anti-inflammatories and/or auto-immune meds and it seems a waste of time to go pre-op or post-op. In the meantime my most recent surgery, the 4 level ACDF with an excellent NS (but not part of any medical team) lead me to a man who seems to be a good, solid, MD primary care Dr. I am hopeful he will help me build a team. He referred me to a new Rheumatologist and I have the first available which is Oct. Nothing happens quickly and trust me, everything in NE Fl is slower than...everywhere, perhaps!

More shortly, but I want to THANK you all for chiming in. I am not a fan of PT unless it is with a really good therapist and one on one. Not easy to find. I have had so much of it and I know how good or bad it can be. I am not up for any exercise classes, that is for sure. I exercise every day on my stationery bike and I do 10,000 steps. I am busy with my family and teaching online. I would like to be somebody that goes to exercise classes but I do not feel up to it. My body is an issue. I have at least 2 auto-immune diseases and while I try and find out what they are and how best to address them I just do not feel up for anything beyond my normal day. I am almost 60 (just bonding, lol) and I do think I cannot trust my body. Not due to age...my mother still takes Pilates! But due to health. I have fatigue. Etc.

TN thanks for letting me know about the muscle spasms. Thanks to all of you for encouragement. I have found when I feel something off it usually is, and I am concerned that by stretching my elbows forward my scapulae (?) pop out and then hurt. With a connective tissue disorder...who knows. I am so glad you told me about not lifting my arms. I don't lift heavy things but I have been stretching my arms over my head. Maybe that has not been a good idea. My dr gave me no precautions other than no kickboxing. Darn. LOL.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/26/2018 8:09 AM (GMT -6)   
TN, last year my neighbors went to Oregon on vacation to visit some friends. She was amazed at all of the green there in late summer. She took many pictures of flowers & of course shared them with me. They were truly beautiful. The hydrangeas were beautiful but all of them were, lol. Here in Tx it is a real struggle to keep things alive through the summer with the extreme heat.

By the way, I don't think you saw that Abilene posted to you! It got overlooked, so when you can check out her post.

I remember you talking about the support group. Did you get the issue resolved with the father of the younger girl? I remember he was a bit of a pain to have around. If you have the time, I do have a couple of questions that you may be able to answer for me. I prefer not to discuss them here. If you will click on my name, it will make my email address visible for you. Only if you feel comfortable in doing so, if not, no problem.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 8/26/2018 8:55:22 AM (GMT-6)


Darla
Regular Member


Date Joined Jun 2018
Total Posts : 150
   Posted 8/26/2018 8:16 AM (GMT -6)   
Abilene I want to offer congratulations on all the wonderful things (and people) in your life! How excellent!

TN...How do you feel about another surgery in Oct? What exactly is hypermobile joint syndrome? I am going to look at your earlier posts as well.

I am so jealous to all of you in the beautiful areas for Fall. My husband and I went to New England a few times over the past few years and really reminded me how much I miss it. I grew up in NY. Enjoy!

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/26/2018 11:20 AM (GMT -6)   
Abilene
Thanks for the post and kind words. The group is a blessing and even though I grow weary at times the appreciation from the people who attend keeps me going.

I will revisit your old posts. Seems we both had a long recovery but with different symptoms. I am glad to hear you are doing so well! Good for you!

I am going to put off my surgery until January. I feel like I am still recovering from my pain pump surgery. To be honest, I am very afraid of another neck surgery. And as my posts suggest, I am afraid of coming out worse. I feel stuck because it sounds like this is a need to surgery. I can only hope and pray that it will fix my severe neck episodes and hopefully other issues as well. The neurosurgeon is a top one in the nation and in Portland, Oregon.

Thanks for checking in, it is always wonderful to hear a story of success.
❤️TN
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

Post Edited (Taller Now) : 8/26/2018 10:42:53 AM (GMT-6)


Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/26/2018 11:35 AM (GMT -6)   
Karen,
Thanks for your clarification. I always knew that there was no ill will intended. Sometimes people brush over the qualifiers so I am glad you went back over them. And yes, we need to know our bodies and understand them to be well. My years of fitness taught me that and like you I have no coordination only stamina. Sometimes I see photos of myself in those healthy days and my heart aches. But I also feel like illness has forced me to grow as a person, into someone better.

We own acreage north of Vancouver and the country living suits me well. Surrounded by views, wildlife, trees and flowers with my two dogs and husband is a blessing that keeps me going. I enjoy being outdoors and am always pushing my physical limits. My grandchildren also keep me wanting to stay as active as possible. Often, I send myself to my recliner for a few days and pay for those fun times.

My pain doctor is in the Pearl so right now I am there every four weeks as we get my pain pump adjusted. I wish you the very best. I hope you have people to support you.
TN
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 8/26/2018 2:09 PM (GMT -6)   
TN:
The Columbia River separates us.

If you would ever like to meet when you are otherwise in Portland let me know. We could share a cup of coffee and conversation.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Taller Now
Regular Member


Date Joined Jun 2014
Total Posts : 323
   Posted 8/26/2018 3:30 PM (GMT -6)   
Karen,
I often stop for coffee after my appointment, which is on 18th and Irving. I would love to meet for a cup of coffee if you are up for that sort of thing. My next drive to Portland is on Sept. 17th. Email me if you are interested.
Intrathecal pain pump: Failed C4-7 ACDF. Pseudoarthrosis C6/7, T1 and C3 moved, foraminal stenosis after surgery. Facet arthrosis C0-4, severe osteoporosis, DDD, osteoarthritis - all levels of spine, Failed L5/S1 LD surgery, spondylitheisis, spondylitis L4-S1, nerve pain in legs and arms
Migraines, cervicogenic headaches,hysterectomy, melanoma
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