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Thu, Nov 7 8:24am · Has anybody had an implantable neurostimulator for chronic pain? in Spine Health

I have written previously regarding my Camptocormia and the long trail that I followed to finally get the proper diagnosis. Among the recommendations for relief was a neurostimulator implant. I went through the required interviews (for the insurance company) with a neurologist, and a psychologist. I must have passed because I was sent to Medical University of South Carolina, Charleston. I had the stimulator (believe the brand was either Templeton or St.Jude, but then again with my memory it might have been something else) implanted in my left hip, about 4 inches below the belt line. There are two small wires that are threaded on either side of the spine and can run the full length of the lumbar joints depending on where they want to be able to distribute the stimulations. Discomfort from the procedure was minimal and recovery was quick (up and walking as soon as anesthesia wears off). There was a small control, about the size of a car remote fob. I met with a company representative a couple of times, in my hometown, to work with the settings. They have a laptop that they connect and depending on where you feel the need for the stimulations, and the intensity, they adjust your controller to fit. If one is suffering from “pain” along the spine I can see how this could be a solution, but does not address Camptocormia. I wore it for about 5 years and only used it the first 18 months to 2 years. While I was wearing the implant I could not get an MRI if needed. The newer models might not have any such restrictions. I decided to have it removed while I was fairly healthy and didn’t yet need an MRI. Removal was easy. I have read where people who were experiencing intense back pain from things like falling off their horse, were greatly helped by the implant, to the point of returning to their previous activities. I would recommend giving it a look.
RJM

Sat, Oct 19 10:58am · Camptocormia in Spine Health

One thing I would like to point out to those searching for a diagnosis for their bent over posture. When viewing the MRI/X-RAY from a back view, while facing forward, the rear view of the vertebrae should show two black dots at the point where the vertebrae merges with and forms the spine. The black dots are muscles, two per vertebrae. With Camptocormia these small muscles atrophy and are individually replaced with white dots, which is fat/adipose tissue. The cause of this unknown, even among those who study and are familiar with Camptocormia. No known pharmacological response. Best assistance is through walks, throughout the day, which prevents atrophy of other major muscle groups, and gets us out, thus my search for the best walker, and brace, when needed.

Fri, Oct 18 9:20am · Camptocormia in Spine Health

This “lower back fatigue”, as I referred to it was the best description I could come up with, came on rather suddenly while out on a daily walk of about 3 miles. We were a group of employees who walked during lunch. Nearing the end of the walk I suddenly felt the need to sit on a big rock to “recover”. I was 62 at the time. This was the beginning of a 15 year journey that wound through numerous medical specialists and tests: epidurals, facet blocks, neurostimulator implant(4 years, then removed), laminectomy, chiropractors, acupuncturist, neurosurgeon, neurologists, Mayo Clinic-Jacksonville, FL, X-ray, MRI, CScans, numerous blood tests. The one common opinion shared by just about all was: “You have signs of arthritis in your back but not more than someone your age should have”. I was at the point where I felt like I had tried every avenue and just accepted it. My 4 year older sister had been walking bent over for at least 4 years before me. She never seriously investigated the symptoms and refused to go in public with a walker, choosing to move from handhold to handhold. Now when she is in the kitchen the breakfast bar prevents seeking her. Point is: don’t let pride interfere in your lifestyle. I was finally referred to a neurologist in Savannah, GA Dr. Victor Rosenfeld (912)691-4100, 1326 Eisenhower Drive, Savannah, Georgia 31406, and on August 3, 2017 I had an appointment, meeting first with the nurse who performed a few neurological tests and asked for my symptoms. I have found the best analogy is to say that it is like carrying a food tray with arms fully extended and a light weight and walking. After a number of yards you feel fatigue (not real pain) in your lower back causing you to feel the need to sit down and rest before continuing. After her exam, Dr. Rosenfeld came in and also asked for my symptoms. Again I described it as before. He said that I had Camptocormia. This took all of 1 1/2 minutes, and 15 previous years of failures. He printed out a computer search for Camptocormia and it fully describes my conditions. He said that I would find that 99% of doctors, nurses and clinics would have never heard of it. So true. I have been checked for Parkinson’s and I don’t have that, thank God, nor does my sister. There are some indications that it can be inherited in some (I think my father showed some symptoms, much less than my sister and me). Please explore the back brace with Hangar. I have a great walker called The Drive, available through Walmart and Amazon and they make a model that has raised handles that are designed for walking with your forearms resting in arm brackets. Look it up on Google. Keep on looking, there’s too much life left, and things for us to do.
Bob

Thu, Oct 17 9:31am · Camptocormia in Spine Health

I posted these pix August 2018 after I was diagnosed with Camptocormia. The VA supplied me with a great walker and handicapped parking permit and Medicare covered the back supplied by Hangar Clinic. Google Hangar for one nearby and visit them along with these pictures. This brace will easily and fully support you in an upright posture. Not easy to sit down for any length of time.. when the strap is passed around the back and attached you then close the latch. If you need to sit for a rest while on a walk, you would unlatch the lever which allows you to ease down to a sitting, in a slightly leaning back position. Once rested push up to standing position and relatch.

Thu, Aug 29 12:07pm · Shoulder support/brace recommendations? in Spine Health

The below comes from Mayo Clinic Proceedings. Best to Google Camptocormia and get full background. May not be your issue. Took me 15 years to find a Neurologist who diagnosed me within 2 minutes. Had visited Mayo at Jacksonville, neurologists, neurosurgeon, chiropractors, had stimulator implanted/removed, various injections, X-ray, MRI, physical therapist, acupuncture. Very common in Parkinson’s, which I don’t have. All symptoms go away when sitting/lying down. Got my back brace at Hangar Clinic in South Carolina, but I feel they are represented nationally. I have found the pictures (2) that I was able to include in my original comment but now I cannot bring them over. Just got it. Good luck.
RJM

Simon M. Glynn, MD, Sean J. Pittock, MD, Steven A. Vernino, MD, PhD
Mayo Clinic College of Medicine, Rochester, Minn
PlumX Metrics

https://doi.org/10.4065/79.6.828

Article Info click to expand contents
To the Editor: Camptocormia, from the Greek words kormos (body) and kamptos (to bend), is a term used to describe extreme spinal flexion while standing that disappears in the horizontal position. The term was first used in 1914 by the French neurologist Souques to describe a syndrome affecting young soldiers during World War I.1 At that time, it was considered a form of conversion disorder rather than a disease of organic pathology.2 In the 1910s, definitive treatment for patients with refractory disease was the use of “électrothérapie persuasive” to the spine.3 The term camptocormia has recently reappeared in the medical literature in association with several clinical entities, including Parkinson disease (PD).4 We describe a patient who presented with this atypical manifestation of PD.

Report of a Case.—A 75-year-old man presented to our emergency department with severe, intractable back pain. Over the course of several years, he had leaned increasingly forward at the waist to relieve worsening back pain until he was nearly parallel to the floor (Figure 1, A). Although he was physically able to stand erect, this posture worsened his back pain. The pain did not respond to analgesics, including narcotics.

Figure thumbnail gr1
Figure 1

Patient with camptocormia on presentation (A) and at dismissal (B).

The patient appeared to be in severe distress, constantly shifting position from lying flat to standing with extreme flexion of the lower back and then returning to bed. He had reduced facial expression. Alternating movements of the upper extremities were slowed, more on the left than on the right. No tremor was noted. Strength, reflexes, and sensation were normal. Magnetic resonance imaging and plain films of the spine revealed no bony abnormalities and no abnormal signal in the paravertebral muscles that would suggest a muscle disorder.

Intravenous morphine was administered in the emergency department, without benefit. The patient was then given one 25/100-mg tablet of carbidopa/levodopa dissolved in carbonated soda (this method of administration provides a quicker peak response, about 20 minutes compared with 60-90 minutes for immediate-release carbidopa/levodopa in tablet form). Within 30 minutes, the patient reported complete resolution of his pain. His flexed posture disappeared, supporting the diagnosis of a painful axial dystonia in this patient (Figure 1, B). He was treated subsequently with carbidopa/levodopa, one 25/250-mg tablet 3 times a day, and extended-release carbidopa/levodopa (50/200 mg) at night. At follow-up 2 years later, the patient had no pain and ambulated well with a mildly stooped posture.

Discussion.—Abnormalities of posture represent one of the cardinal features of PD. Patients often have a characteristic posture with the head and body bent forward and the knees flexed. Historically, an extremely flexed posture as seen in our patient (camptocormia) has been associated with conversion disorder. Recently, this posture has been described in association with numerous neurologic disorders, including axial myopathy, motor neuron disease, and PD.4–6 Djaldetti et al5 described 8 patients with idiopathic PD who developed camptocormia, some of whom had hyperflexed posture as the presenting symptom. Some patients improved with levodopa therapy, while others did not. The pathogenesis of this posture is unclear, but it may represent a type of dystonia rather than rigidity because it resolves when the patient lies down. Dystonia is well described in PD, particularly in dopamine-deficient untreated patients or as an “off period” phenomenon, especially on awakening in the morning. A reported case of camptocormia in a PD patient that was treated successfully with use of pallidotomy6 reinforces the concept that camptocormia in PD may represent a type of dystonia.

Pain in PD is poorly understood and usually attributed to dystonia or rigidity. It may be so severe that it overshadows other characteristic features of PD. In addition, akathisia, a restlessness or compulsion to move, may be described by the patient as discomfort. These sensory complaints may precede the onset of the movement disorder and complicate the diagnosis, especially in younger patients.7,8

The coincident presentation of camptocormia and severe pain in our patient illustrates the protean early clinical manifestations of PD, which can be misleading to clinicians unfamiliar with these less common presentations. After other causes have been ruled out, treatment strategies for pain due to PD are the same as for motor symptoms but may be less effective. Importantly, although dystonic postures and dyskinesias may be caused by excess dopamine, clinicians should not assume that dystonia is always a peak-dose phenomenon. Rather, higher doses of levodopa or dopamine agonists may be needed to reduce rigidity and dystonia and relieve pain

Thu, Aug 29 8:32am · Shoulder support/brace recommendations? in Spine Health

A few months ago (6-8) I wrote a comment regarding my experience trying to, and finally getting diagnosed with Camptocormia (bent back syndrome) and getting a great walker that I use outdoors, as well as a back brace that I use, along with my walker for longer walks (2+ miles). I included pictures of the brace along with the name of the clinic that supplied me with it. Please search this site under Camptocormia.
RJM

Mon, Jun 3 8:42am · Camptocormia in Spine Health

I do encourage you to give a serious review of the brace that I included pictures of in my earlier reply. The design specifically addresses what we are trying to counter: bending at the waist. The lower band is adjusted to press against your lower body, below the belt line and above the cervix, I would guess it would be about 1/4 the way down the zipper of a man’s trousers. The upper band rides directly on the sternum but below the throat. The strap goes around the back above the belt line, I think that would be L5-7. The results are very similar to having someone stand next to you, facing you, with one of their hands pressing just below your sternum while their other hand presses against your lower back, just as one would do when trying to position you for an upright posture.

Sun, Jun 2 6:33am · Camptocormia in Spine Health

As I understand it, the best I can hope for is no or slow progression to that stage. There is no certainty of either. I feel the more we try to be in the most upright position we are capable of the more we help our “muscle memory “. My walker is primarily used to allow me to push up into an upright posture, and on long distance, without my brace I tire, and find I best stop and sit awhile. Canes do not work for me because they do not help me in pushing up. My walker kind of serves as a parallel bar. My sister, who is 4 years older than me, had this condition (never diagnosed), at least 10 years before I began with it. She refused to use a walker, because of her pride, and instead would rely on grocery carts, thus limiting her destinations.