SPOILER ALERT:
TODAY IS SEPTEMBER 14, 2023, AND I AM HERE TO SAY THAT THIS STUFF IN MY CASE WORKED. IF YOU HAVE TIME, READ ON, BUT SHOT #1 HAD A DEFINITE POSITIVE IMPACT AND I AM HEADED IN THE RIGHT DIRECTION. NOT SAYING THAT YOU WILL HAVE THE SAME RESULTS BUT IT MAY BE WORTH A TRY. I GO DOWN FOR MY NEXT SHOT ON SEPTEMBER 21, 2023, MY THIRD SHOT WILL TAKE PLACE ON DECEMBER 14, 2023, AND MY FOURTH SHOT WILL BE ON MAY 16, 2024.
HERE IS THE POST OF VISITS 1 AND 2:
HERE IS A POST OF VISIT 3:
I ran across this on a website:
Dr. Edward Tobinick (Age 71 years old) claims that if you take the medicine Etanercept (a TNF blocker, in this case, Enbrel, which is approved for use on Psoriasis and is indicated for reducing signs and symptoms of moderately to severely active polyarticular juvenile idiopathic arthritis in patients ages 2 and older is being used as an "off label" treatment). In 2010, the Doctor began giving the medication to patients Perispinally (injected into the spine) and achieved positive results in about ten minutes. Tumor Necrosis Factor (TNF) is a multifunctional cytokine that plays important roles in diverse cellular events such as cell survival, proliferation, differentiation, and death. As a pro-inflammatory cytokine, TNF is secreted by inflammatory cells, which may be involved in inflammation-associated carcinogenesis. A dose of 25mg of etanercept is given by injection, directly into the cerebrospinal fluid in the spine by a trained physician. The patient then lies flat on their back and the bed is tilted backward so the patient’s head is below their feet at an angle of roughly 16 degrees for 5 minutes (this is called Trendelenburg Positioning). There are numerous foreign patents and many in the U.S. too. Dr. Tobinick has now treated individuals from every state in the U.S. and from 101 countries (this number will keep growing) around the world. The INR's (Institute of Neurological Recovery) breakthrough treatment is not experimental: it has been used for thousands of patients, from every populated continent in the world. Studies show that dormant circuits in the brain and other parts of the central nervous system, following stroke and other forms of injury, are capable of being re-activated, resulting in rapid neurological improvement.
Dr. Tobinick says in his article which ran in The Philadelphia Examiner on December 22, 2012, what makes up a good candidate:
"WHO'S A CANDIDATE?
The vast majority of stroke and traumatic brain injury survivors living at home or in a rehab center are candidates for etanercept therapy, Boca Raton's Dr. Edward Tobinick said. The best patients are those with some residual function in their mobility and cognition, though he has successfully treated quadriplegics.
Patients who would not qualify for treatment are:
Diagnosed with multiple sclerosis, tuberculous, severe immune suppression or an active infection.
Hospitalized and has not yet been discharged.
Comatose"
It sounds too good to be true, so I went through some of his videos and found one of particular interest. This lady had an Intracerebral Hemorrhagic Stroke in the Left Side of the Basil Ganglia (which was caused by hypertension). So, she had the same thing I had just a different origin (all her problems are on the right-hand side of her body, and she required 3 doses for her treatment). You be the judge by watching her five-minute video (there is an immediate and sustained improvement in severe stroke pain, right-hand function, shoulder range of motion, speech, etc., 3 years after stroke, following perispinal etanercept treatment by Edward Tobinick, M.D., filmed August 15th and September 6, 2022, at the Institute of Neurological Recovery in Boca Raton, Florida.)
She also had her 3rd treatment on November 10th, 2022, and continues to improve:
There are many other videos on their YouTube page if you need more convincing:
Research has found perispinal etanercept results in significant improvements in:
Behavior
Central post-stroke pain syndrome (CPSP) – A disabling condition characterized by pain and sensory abnormalities in parts of the body supplied by those nerves present in the area of the brain injured by the stroke. Mild sensations on the skin, such as touch, warmth, and cold are misinterpreted and registered by the brain as pain.
Cognitive function
Hand function – stronger grip
Hemiparesis – This is the inability to move one side of your body and in stroke patients, it makes everyday activities like eating or dressing, difficult.
Hemisensory defects (these are altered sensations on one side of the body and could include numbness, tingling, or heaviness)
Improvements in swallowing
Mood with reductions in depression and anxiety
Movement
Sensations
Shoulder pain and range of movement. Significant, almost instant improvements have been seen regarding shoulder flexion in the paretic arm (the arm that is paralyzed after a stroke)
Spatial perception (being aware of your surroundings and your position relative to them)
Speech (reduces slurring and increases the speed of speech)
The way a person walks (their gait).
Case studies have also reported regained bladder sensation and control and a reduction in excessive emotionalism.
What to do? It is a very expensive procedure and there are no guarantees that I would have the same results (they make you sign your life away, so they have no liability). But if it got rid of some or all of my pain (a constant 5 or greater) it would be worth it to me.
It's April 12th, 2023, and I had my call with the doctor's office today. I actually spoke with Dr. Edward Tobinick for 1/2 of an hour and he recommended two doses, one week apart. It has an 80% success rate which is 4 out of 5 reacting positively to it. He told me that the work done by Dr. Jayson Stack (my neurosurgeon) was excellent because he took the time to make sure that the blood was gone which is a major factor in stroke post-op. So, I went ahead with it, there is a five-month waiting period, so I'll let you know how it goes on September 14th.
It's April 21, 2023, and I got my Complete Blood Count (CBC) done and sent done to Dr. Tobinick. No red flags in it so that's great news.
So, I was talking to my neighbor Kevin today (4/29/23) and found out he is going to help me out by getting a room because he works for Choice Hotels. God is good!
Another phone conversation and another miracle. I was talking to Gary (5/2/23) who is a long-time friend where I used to work and he told me that he had some good luck and desires to pay it forward, so he is going to cover my second shot (provided the first one does what we hope). You can't make this stuff up, again, God is good!
Another phone conversation and yet another miracle. I was talking to Tony (6/30/23) who is again a long-term friend, and he too is going to contribute to my shots (provided the 1st does what is supposed to do) by covering 20%-25% of the cost. (UPDATE 9/15/23 - Tony will now cover the cost of one shot). You just can't believe how happy I am. I have eleven weeks minus one day and it will be here, God continues to amaze me.
Had my Skin Test for Tuberculosis (PPD) today June 30, 2023, and it was negative. Sent the results down to Dr. Tobinick and all is good from a preop testing perspective.
Today is July 13, 2023, and only 9 weeks to go but God is still working. I had lunch with Laura who is an old friend and a trusted comrade. She too wants "in" on the action and is going to cover one shot for me. I can't even begin to say thank you and I know that God has something in store, and I will soon be able to find out what it is.
Today is Thursday, August 10th, 2023, only 5 weeks to go and we'll answer the question of whether or not I'll respond to this treatment. I have been researching the "thing" that makes this treatment so successful and it is the fact that it uses perispinal as the way to get the etanercept to the proper location. There is a whole discussion of the approach in the write-up on it located on Dr. Tobinick's patent number US 7,214,658 B2 dated May 8th, 2007: METHOD OF DELIVERING A TNF ANTAGONIST TO THE BRAIN OF A HUMAN BY PERISPINAL ADMINISTRATION WITHOUT DIRECT INTRATHECAL INJECTION. Some highlights of the patent are:
Perispinal administration involves anatomically localized delivery performed so as to place the therapeutic molecule directly in the vicinity of the spine, and, for the purposes of this patent, administration which is outside of the intrathecal space (although the subsequent movement of a therapeutic molecule into the intrathecal does occur).
Perispinal administration leads to enhanced delivery of etanercept to the brain in a therapeutically effective amount, via the vertebral venous system and/or cerebrospinal fluid.
Etanercept is delivered to the interspinous space in proximity to the ligamentum flavum by percutaneous injection through the skin by midline interspinous needle injection.
Etanercept which reaches the cerebrospinal fluid will immediately bind and inactivate TNF circulating in the CSF and therefore immediately reduce its adverse biologic effects on the brain.
The vertebral venous system is a non-obvious route of administration for the inventions disclosed herein. The present invention is counter intuitive as it uses the venous system to deliver a therapeutic molecule to the brain.
The inventions disclosed here are counter-intuitive because they rely on the casino-vertebral venous system to deliver the etanercept to the brain, brain stem, meninges, spinal cord, dorsal root ganglion, and nerve roots.
This delivery is accomplished by inducing retrograde venous flow (the opposite direction from the usual direction) which is made possible by the lack of valves in this venous system, and by the proper use of gravity and positioning of the patient so that the venous flow in the retrograde direction is accomplished.
The vertebral venous system is continuous along the length of the spine, but is, closest to the brain in the cervical (neck) region. The vertebral venous plexus is extensive in the cervical region, and in this area defects in the ligamentum flavum are also more common, both of which factors help etanercept delivered to the cervical interspinous space to reach the brain. For all of these reasons, for this invention the usual point of injection for the perispinal etanercept is in the posterior neck, overlying the spine.
Correct positioning of the patient so as to facilitate retrograde blood flow in the cranial direction is utilized as a part of the present invention to achieve improved delivery of etanercept to the brain. After a posterior cervical interspinous injection of etanercept in sterile water the patient is rapidly placed in the prone position and the plane of the examining table is placed head-downward (Trendelenburg) to facilitate retrograde delivery to the brain and the cranial venous system. Etanercept, because of its biological nature, is uniquely suited to delivery via the CVVS to the brain, because of its nearly instantaneous therapeutic effect. This instantaneous effect is the direct consequence of the fact that etanercept, in contradistinction to synthetic drugs that are not of biological origin, does not function by influencing intermediary processes, but rather binds directly to soluble TNF.
One of the advantages of perispinal delivery into the interspinous space is that administration is simplified. The route is simple and safe. Hemorrhage due to the use of long or large bore needles is minimized because perispinal administration, by the subcutaneous route, requires only a short, narrow bore needle.
Local perispinal administration also has the advantage of providing a depot of therapeutic medication in the surrounding tissue, which will provide therapeutic levels of medication to the treatment site for a prolonged period of time.
All of these factors tend to increase the therapeutic half-life of the administered cytokine antagonist. Taken together, all of these forms of localized anatomic administration have significant clinical advantages over the various forms of systemic administration customarily used to deliver etanercept.
That's what Dr. Tobinick feels. Other people say that Dr. Tobinick's claims and methods have been met with skepticism and criticism from the broader medical community. Many experts have expressed concerns about the lack of robust clinical trials and scientific evidence supporting the efficacy and safety of perispinal etanercept for neurological conditions. The use of the anti-inflammatory drug in this manner and the safety of perispinal raises questions about potential risks and unintended consequences.
I decided to call Amgen and see if they had anything to say about perispinal and their medicine and was politely turned down to ask my doctor. Also, a search on their site of 'perispinal' yielded no results.
Paul P. from Orlando, FL wrote the following on 12/30/2012 after giving it a 1-star rating (excerpt from the post):
"If you do a Google search of "Tobinick and Etanercept" you will find many negative articles. Amgen (the manufacturer of etanercept) issued a press release asserting that there is insufficient and unsubstantiated scientific data to support Dr. Tobinick's use of Enbrel and distances itself from Dr. Tobinick's claims with respect to Alzheimer's. Amgen specifically disclaims Tobinick's work using Enbrel saying: "We are not aware of any human data demonstrating that Enbrel reaches either the cerebrospinal fluid or the central nervous system in sufficient concentrations to inhibit the actions of TNF when administered by Dr. Tobinick's method" and "... we believe the reported rapidity of response to be biologically improbable when considering the time required for resolution of an active inflammatory response and the potential impact that this could have on cognition" and that "Amgen does not support this or any off-label use of Enbrel".
I hope the State of Florida's division of medical licensing pulls all of Dr. Tobinick's patient records to either confirm or deny his results vs. expectations of hope that Dr. Tobinick's marketing efforts create. If, indeed, we are in the minority of patients for whom this 'breakthrough' did not help them, I can live with the fact that this is experimental and off-label; if, however, his claims are untrue, he should be stopped."
I also found this appearing in an article 21 January 2008 on the ALZFORUM:
"Amgen, the maker of etanercept, distanced itself from the study. A statement regarding Tobinick and Gross's study on the company website noted: "This study was not supported or endorsed by Amgen. While Amgen and others have long recognized the potential for TNF inhibitors to have an effect on neurological conditions, we have carefully examined this study and believe that at this time there is insufficient scientific data to support the use of a TNF inhibitor as a means of treating Alzheimer's disease."
Reached by telephone, Amgen spokeswoman Sonica Fiorenza confirmed that this statement referred not only to the present paper but that Amgen had studied etanercept's potential for treating AD internally as well. "As common sense would suggest, we have looked very closely at this,", Fiorenza said.
Dr. Karen D. Sulivan, who's site is "I CARE FOR YOUR BRAIN" and is a board-certified neuropsychologist is a nay sayer in her video entitled "Etanercept for Stroke Recovery: Fact or Fiction?". What I find interesting is she doesn't take the time to understand the perispinal aspect of the delivery. You be the judge:
I guess I will find out in five weeks. Most of the reviews online are negative and the most I found was around 10 reviews on any one site. It's supposed to work on 80% of the people who take it. If it works, then hallelujah! If not, I have been making steady progress at the CORE gym and will keep on pushing to get better.
Before I have treatment in a little over three weeks, I thought it would be good to capture one source (my whole right side is a problem) of my pain and that is my foot and inflamed right knee.
This is what I hope to address (along with other ailments) through my treatment, only time will tell whether it is meant to be, and I'll know in about three weeks' time.
In the meantime, I used ChatGPT to write a little song which I hope you'll enjoy.
(Verse 1)
Five and 3/4 long years, I've waited here, With hope and faith, through every tear. A battle fought, with pain in stride, For central post-stroke pain, is on my right side.
(Chorus)
Five and a half months, we've held our breath, September 14's the day, we'll face this test. Perispinal's etanercept, the path, we're on this ride, With Dr. Edward Tobinick, there standing by our side.
(Verse 2)
He said, "This treatment's good, let's make it right, To conquer this pain, and find the light." Amgen, they questioned, but we won't hide, For faith is our shield, and hope our guide.
(Chorus)
Five and a half months, we've held our breath, September 14's the day, we'll face this test. Perispinal's etanercept, the path, we're on this ride, With Dr. Edward Tobinick, there standing by our side.
(Bridge)
With Gary, Tony, and Laura too, They're here to support, in all we do. In the depths of the struggle, we'll find our way, With God above, we'll see a brighter day.
(Verse 3)
As we journey forward, hand in hand, Facing the unknown, across the land. Perispinal etanercept, our beacon bright, With love and support, we'll win this fight.
(Chorus)
Five and a half months, we've held our breath, September 14's the day, we'll face this test. Perispinal's etanercept, the path, we're on this ride, With Dr. Edward Tobinick, there standing by our side.
(Outro)
With faith and hope, our spirits soar, Together we'll reach what we're fighting for. In the face of the storm, we'll find our way, With God and our friends, we'll see a brand new day.
Today is September 14, 2023, the big day. I arrived at INR at 9:25 am and had to wait in the lobby and then took a COVID test. After 15 minutes they let me in, and I filled out the paperwork and paid them for the balance of my first shot. At 10:20 am I went back and the spent an hour doing physical and mental tests, sit down and stand up and a GAIT test which took until 11:20 am. They are now treating 2 patients and I was #2 so I went in at 12noon. After an interview I got my shot at 12:20 pm and then tipped backwards for 10 minutes. Around minute 2 I could feel my fingertips and when it was over, I definitely felt an improvement. I had better movement in my neck, I could touch my toes and improved my walking. I by no means thought this was going to get taken care of with 1 dose. I went from a 7 out of 10 to a 4 out of ten which is huge improvement. I definitely took a step in the right direction, and I go back for shot #2 next week and shot #3 on December 14th, 2023 and I'll post those updates as the occur. Here's a shot of me while I'm waiting for the medicine to take effect:
By the way, this doesn't work for everyone. Check out this link for more info:
Of particular interest is jmolloypisacane (located at the bottom of the link) on August 10, 2023 who did not realize the whole benefit, excepts from our "chat":
I went to dr Tobinick Aug 10 2023 I could breath better now I could now do harder obstacles i could stop on a dime now and improve my confidence a little. My story is
I’ve had rt vertebral artery dissection with 2 brain stem strokes with a small stroke (Tia) the day before MANY symptoms both side I wish the rt eye double vision would go away and the head fuzziness ( feels like you’re drunk)or (feels like someone spun you around quickly and out you down and walked away)would go away and I would talk normal again and my rt side facial paralysis would come back My left side is Like it was stuck in snow for hours then put under hot water I wish The falling asleep feelings and numbness would go away on my left side and my walking was not like a monster and I would not limp when walking and the rubber band feeling on my left knee,calf,and foot would go away!
I wish my taste would come back and my deafness in rt ear would come back and my rt side would not feel so inhibiting !
It happened on august 13 2021 and feels like forever No known reason, spontaneous Left side variant born with it, does not connect to the brain I’m now 47 I’ve had acupuncture more than 15-20 sessions, HBOT 40 sessions, 3 natural paths, stemcell transplant in Florida ( my own 35-45 million cells from my bone marrow) also I have tried grounding and also wearing stones charging them putting lavender on them etc. carrying them with me i take many vitamins and 3 mushroom vitamins I take minimal meds for medical stuff, So I take BP MED , cholesterol med heart rate med Depression med
I also take peptides BPC157 with TB500 GHK -CU TB500 itself CJC1295 ipamorelin INJECTION IN STOMACH or LEG I ALSO DO N-Aceytl Semax intranasal, bio Tesla healer cans Asea water and stem cell spray under tongue X39 patches and Aeon patches they are stemcell patches I did a shot in Florida of Enbrel in back of neck and it helped minimal I am hoping for the best maybe a miracle
AbrocomaSufficient39
·16 days ago
Thank you for sharing and keep at it! My session is September 14th, I had a hemorrhagic stroke on the basil ganglia on the left side of the brain 5-1/2 years ago (so my right side is in pain 24x7 from head to toe). I will let you know how it goes for me in the coming weeks.
AbrocomaSufficient39 ·7 days ago Thank you. I will let you know how it goes later in the week. BTW, my stroke was actually 5 years and 10 months ago (9/19/23), sometimes I'm having too much fun (not!). jmolloypisacane ·3 days ago Good luck tomorrow it’s going to be a long visit they are very strict on Covid They will test you to see if you have Covid. You have to sit in the hallway and take your people walkers done no cover test is done so get ready for that and the Staff is very very helpful
AbrocomaSufficient39 ·3 days ago Thanks for the heads up on the COVID (got through that with flying colors). Had my first shot today and it definitely helped. I am by no means 100% healed but definitely moving in the right direction. I go back for my second shot next Thursday and I am scheduled for a third on December 14, 2023.
As you can see, a very different stroke and a different outcome. The main message is to do your homework and then make your decision.
It's now September 21, 2023 - Shot #2. I arrived at 9:15am, took a COVID test and by 9:40am I was in the back. At 9:55am we did the usual, word games, squeeze test and finger to nose all with fairly positive results. I was done with that by 10:10am, 10:30am I took a baby aspirin, and the Dr. came in at 11:15am. We spent a half-hour with questions such items as "How by you determine where the shot goes? Answer: In the middle (I did not know that)", "How long will the shots last? Answer: That varies by patient. Some patients require one, others require more. In my case I will require more because a hemorrhagic stroke is tough because of the blood that lies around from it.", and "How do you determine the intervals of 0, 1 week, 3 months and 6 months? Answer: Based upon our experience." I also got to tell him of a side benefit of treating my tinnitus in my right ear which went along with the general stuff with the stroke. Come to find out in some patients this is a side benefit of perispinal etanercept and we looked at paper from 1999 that covered this. Dr. Tobinick's patent number US 2001/0004456 A1 dated June 21, 2001: CYTOKINE ANTAGONIST'S FOR THE TREATMENT OF SENSORINEURAL HEARING LOSS (more on this a little later). Had my shot at 11:45am and left very happy that my pain continued to go down I'm now running about a 2 on my upper body, 4 on my mid-level and a 5 on my lower extremities. The biggest thing this time was I for the first time in almost six years can now move my right foot and right toes a little bit, God is good.
From Page 4 of the Patent was an interesting example:
EXAMPLE 1
Etanercept for the Treatment of Sensorineural Hearing Loss
[0048] A 73-year-old Caucasian women patient presented with a history of slowly increasing hearing loss in both ears. The patient had noticed decreasing hearing beginning approximately 20 years earlier, in her 50's. Her father had experienced hearing loss beginning about the same age. One yar prior the patient had noticed that she was having great difficulty hearing conversation at family meetings. Her grandchildren were urging her to get hearing aids about that time. Six months prior to her visit she obtained digital hearing aids and used them daily. The patient had a recent history of sciatica; a history of spinal stenosis; and a previous diagnosis of sensorineural hearing loss. A subcutaneous injection of etanercept was administered at a dose of 25mg. One hour later the patient noticed that sounds were significantly louder. Improved hearing continued for the duration of treatment with etanercept. One day after receiving the second dose of etanercept 25mg, which was administered four days after the first dose, the patient needed to remove her digital hearing aids because her hearing was so improved that sounds were too loud while the hearing aids were in place. This had not been necessary during the entire time of use of these hearing aids, prior to her treatment with etanercept.
While mine is not as good as the patient, I took have had a 50% reduction in terms of my tinnitus and look forward to getting more as the shots continue. An added benefit that I had no idea was coming and I'll gratefully accept it.
Here a picture of Dr. Tobinick and me:
I'll see you all after shot #3 in December, until then be safe.
It's shot #3 time and I continue to make good progress. I look forward to shot #4 in May of 2024 for sure. I did get to meet Michael Skivesen & Tobias who are getting training for a couple of weeks before going back to Denmark to open the first clinic of its kind.
And part of my "give back" was to run a 5k and push Jonathan the entire length of the course which happened on December 16, 2023, it took us 53 minutes to finish the course:
