Tidal Waves

Just in a moment it began….it started as a little bit of pressure, a little nerve fire above my forehead… then it came, a rush of pain, a hot, fast moving spiral of extreme pain, rolling around in my head, then the build up of nausea, don’t move, please don’t throw up…..having a fused neck from C4-C7, the last thing you want to do is throw up…Sitting as still as I can, I waited…..not moving, almost screaming…..but who would hear me, no one is here……still waiting for the pain to subside, can I drive? No, it will pass. Slowly the swirling of pain is slowing down, almost stopping, until it haunts, right in the back of my head……right where the atrophy is sitting on my cerebellum….. I look at the clock, although it seemed as if hours had passed, only minutes until I am back to my normal, my normal….

John F. Kennedy’s Pain Story


This is a great informational article, written in September, 2012 Practical Pain Management.

Some short exerpts:

The 1962 edition of Dorland’s Medical Dictionary does not even list autoimmune disease.13 The 1965 edition of Current Therapy only refers to “autoimmune reactions.”14 Slowly but surely the medical profession began to accept the fact that the body may actually turn on itself. In contrast to the 1962 edition, Dorland’s Medical Dictionary in 1981 defined autoimmunity as “a condition characterized
by a specific humoral or cell-mediated immune response against the constituents
of the body’s own tissues.”15 By 1989, Taber’s Medical Dictionary succinctly
defined autoimmune disease as we view it today: “Disease in which the body produces [a] disordered immunological response against itself

Pain management practices are now seeing patients with genetic autoimmune
diseases similar to that of JFK’s. Unfortunately, autoimmunity may be
a progressive lifelong disease that produces severe pain, which may become
centralized in the CNS. Fortunately for JFK, he was referred to Dr. Travell
for pain management in 1955. She was undoubtedly the best pain management
physician at the time. Her treatment regimen was comprehensive and
consisted of medication, exercises, and physical rehabilitation. It was the forerunner
of contemporary treatment for severe centralized pain.

Writing in the The Atlantic, Dallek noted that Lee Harvey Oswald killed JFK before the president’s medical ailments could. 1 In fact, Dallek surmises that “the evidence suggests Kennedy’s physical condition contributed to his demise.” On November 22, 1963, JFK was wearing a corset-like back brace as he rode in a caravan of official vehicles through Dallas. Oswald’s first bullet struck JFK in the back of the neck. “Were it not for the back brace, which held the President erect [and not slumped over], the second, fatal shot to the head might not have found its mark,” he concluded.

Despite this anecdote, it is clear that JFK would never have been in that convertible
on that fateful day if it had not been for the skill of his pain physician. Practitioners of pain management as well as pain patients should study the case of JFK. There are many lessons to be learned. Above all, his pain story is one of great will, desire, and discipline
on the part of both patient and physician.


1. Dallek R. The medical ordeals of JFK. The Atlantic.
Dec 2002. http://www.theatlantic.com/magazine/
Accessed August 3, 2012.

13. Dorland’s Illustrated Medical Dictionary. 23rd ed.
Philadelphia, PA: WB Saunders; 1962.
14. Lovell RG. Autoimmune reactions. Current Therapy.
In: Conn HF, ed. Philadelphia, PA: WB Saunders;
15. Dorland’s Illustrated Medical Dictionary. 26th ed.
Philadelphia, PA: WB Saunders; 1981:141.

Arachnoiditis article from Medical News Today

Arachnoiditis is a neurological condition that causes pain in the back, perineum (the space between the genitals and the rectum), legs, arms, and feet. Arachnoiditis can also affect a person’s vision, sight, and mobility. Read more: https://www.medicalnewstoday.com/articles/320811.php

via Arachnoiditis: Symptoms, diagnosis, and outlook — numerons


So I get online to one of those “Ask the Doctor” sites and decided to ask them if my Neurosurgeon was correct in my diagnosis, rather spend $18 for some tid bit of information than have to drive 50 miles to another town to get a second opinion.

So here was my question:

I recently was diagnosed with posterior fossa arachnoid cyst centered on the left cerebellum. I was already on anti seizure medication. I was given another medication to stop the brain pains in the back of my head by Neurologist. Neurosurgeon said not to come back unless symptoms worsen or don’t goaway. Shouldn’t I have follow up MRI’s on my brain to make sure it isn’t growing? Cyst is1.3×4.4×2.27cm

So here is the first Neurosurgeon’s answer:

Arachnoisd cysts are usually only incidentally picked up and seldom cause any symptoms at all . Generally do not grow so most of the doctors adopt a conservative approach to manage it pharmacologically . Having already been on an anti seizure medication , this further minimizes the risk of you having any serious symptoms like a fit ,thats why your doctor was confident enough to send home with no further follow up scans either . That sounds reasonable too as in vast majority of the cases the cysts do not grow at all .

Hope it answers

And here was my blow up:

Unfortunately I don’t agree with this at all. I have been having severe headaches in the back of my head, walking sideways, into walls, equilibrium is messed up and although I am not seizing I have spells where I zone out for minutes, I get nauseous at the drop of a hat and my left arm and leg jerk uncontrollably. My left hand and arm go numb if I try to use them, as in trying to drive holding the steering wheel. This cyst was created by a neurologist who gave me a injection for pain, into my neck, without using the x-ray for guidance, the needle punctured my subarachnoid and dura area of brain leaving the fluid from the injection sitting in my arachnoid space below my cerebellum. Thousands upon thousand of people from all over the world are experiencing this problem from having injections that go awry. So I would need to just keep taking medications to hide the symptoms and hope that nothing ever happens. What do you think would happen if something hit me in the back of the head where this fluid is resting? What will happen when I have to stop taking my medications to have another surgery, will I start seizing when I stop taking the medications? We are talking about my cerebellum being pushed on my a fairly large amount of fluid, why would it be ok to never look at it again?

So here is the 1st doctor getting rid of me and then 2nd doctor

Dr. 1 Neurologist

Alright . I would opt out for another expert to help you on this . Please do not reply as it would lock it back to me.

Best regards

Dr 2 Neurologist

Hi Kat, I am an American Board Certified Neurologist with vast experience in diagnosing & treating all neurological as well as all other health/medical conditions; the previous expert has opted out and the company has made this question available for other experts too, and I am very glad to help you with your health concerns.

I am sorry to hear about your health in the form of the various health symptoms as you have described above on the background of having an arachnoid cyst, and I am also sorry for the delay in replying to you, please see this is being a 24 X 7 online service so different experts may log in to the site at different times, I just logged in to the site and saw your question has still not been answered and I am now replying to you immediately as soon as I have logged in to the site just now. Thank you for your waiting & patience.

Coming to the discussion of your health situation;

Yes, I fully concur with your health concerns, yes, a prompt attention towards this arachnoid cyst is certainly necessary now

Considering you have been having various very severe neurological symptoms and these symptoms can be ascribed to the arachnoid cyst too – so this certainly requires further evaluation and management

To start with – a follow up brain scan such as MRI scan of the brain needs to be arranged asap

We need to find out the current status of the arachnoid cyst with regard to the following issues;

Whether the size has further increased

Whether it is causing more pressure effect on the cerebellum

Is there any swelling of the brain

Whether this cyst is causing blockage to the CSF (Cerebrospinal fluid) flow and causing conditions such as hydrocephalus (abnormally increased collection of CSF within the brain cavities called as ventricles) etc

The information such as the ones mentioned above gathered through a follow up mri scan can help in deciding the next treatment plan

Since you are having numerous neurological symptoms and are very severe too so a surgical evaluation need to be considered asap

There are varieties of surgical options that are available to resolve these kinds of cysts

If your current neurosurgeon is not helpful then please try to see another neurosurgeon

You certainly need a follow up mri scan of the brain and quick evaluation for a surgical management for preventing any future complications taking place, and even if the cyst has remained of the same size as before but in light of the numerous and very severe symptoms so a surgical evaluation is certainly necessary otherwise also.

Once again to your questions, please see, a follow up mri scan of the brain is certainly required now asap, and such follow up mri scan can help in assessing the current status of the cyst with regard to whether it has grown further, the pressure effects of the cyst on the cerebellum or other adjacent brain structure, whether the cyst is causing any complications such as lot of swelling of the brain or hydrocephalus etc and the mri scan can also help in making a decision for the optimal treatment for this cyst, surgical management etc, so a follow up mri scan of the brain & a thorough & quick neurosurgical evaluation are certainly required now, and I fully concur with you in this regard.

Wishing you the best health!

All the very best!

Ok so we are from one side of the spectrum to the other, how in the world can the same type doctor have 2 decisions that are totally opposite on an issue involving the brain!!!!

Forest Tennant

Pain and Pain Management

A Web Site Dedicated to Pain Patients

This Web Site is prmarily intended for persons who have intractable pain and their families. I started my pain clinic in 1975. Since then, I have learned and observed a great deal that I believe should be passed on to those afflicted with this medical condition. This site provides the best information and knowledge I have obtained during the past 30 years in the field of intractable and severe chronic pain.

I especially recommend that patients download and read the handbooks and articles on the Patient Self Help page.

My Goal and Mission

  1. Identify and treat the underlying causes of severe, chronic intractable pain.
  2. Develop clinical protocols to treat the underlying causes as well as provide symptomatic care that allows the intractable pain patient to function and have a good quality of life.

The Scientific Breakthrough
Two recent scientific advances now give us the knowledge to attack the basic causes of chronic, severe pain rather than just prescribe symptomatic relief.

  1. An immune, inflammatory cell called the “microglia” causes inflammation inside the brain and spinal cord when it is activated by a painful injury, disease, or trauma. This inflammation is called “neuroinflammation” as it is confined to the central nervous system (CNS) which is the brain, spinal cord, and cauda equina (nerve roots). Neuroinflammation traps the bioenergy of pain in a process called centralization thereby producing constant, severe, suffering pain.
  2. Neurons and nerve cells may regrow and the process is called neurogenesis. Brain and spinal cord make a set of “neurohormones” to accomplish this task. These hormones include estradiol, DHEA, pregnenolone, progesterone, human chorionic gonadotropin, oxytocin, and human growth hormone.

The etiologic or curative approach to severe, chronic pain is to eliminate or reduce neuroinflammation while simultaneously promoting neurogenesis.

Use of Writings by Forest Tennant M.D., Dr. P.H.

Materials on pain and suffering written by me may be disseminated and republished. I put no restriction or copyright on them. It is my deeply held belief that the relief of pain and suffering is a spiritual commandment from “on High”, and anything that helps should be shared.

Arachnoiditis Canada.com


What is arachnoiditis?

Adhesive Arachnoiditis is a chronic, insidious inflammatory reaction of the arachnoid matter of the spinal meninges and intrathecal neural elements that cause debilitating, intractable pain and a range of other neurological problems. It has been regarded as rare by the medical community, but the true scale of the problem remains unknown for a variety of reasons.

The sad fact is that adhesive arachnoiditis remains a contentious diagnosis, which may reflect the medical profession’s reluctance to acknowledge this largely iatrogenic condition.

Dr Sarah Andrea Smith -Fox, MBS, states:

that the article’s aim is to facilitate a clearer understanding of arachnoiditis for both patients and their physicians, so that they can work together to combat the devastating effect the condition can exert upon people’s lives.

Many medical practitioners regard arachnoiditis as a rare dinosaur, considering it related to oil-based myelogram dyes, which are no longer in use. This misconception underlies a general tendency to underestimate the ongoing impact of the condition. Far from being a historical curiosity, adhesive arachnoiditis is a ‘clear and present danger’ which needs to be addressed thoroughly in order to reduce its future impact.

Symptoms & Signs

  1. neuropathic pain, often non-dermatomal*; mostly lower limbs, low back but may also affect upper half of the body
  2. secondary musculoskeletal pain +/- fibromyalgic symptoms; joint pains; headaches
  3. bladder/bowel control dysfunction +/- sexual dysfunction
  4. motor weakness, cramps (tonic)
  5. profuse sweating/temperature control problems; CRPS type appearance.*

will include allodynia, dysaesthesia, bizarre sensations (walking on glass, water running down the leg) transient lancinating pains/electric shock sensations; sensory inattention etc. as per other types of neuropathic pain. CRPS may appear as altered skin colour, swelling, change in sweating, exquisite sensitivity, after minor injury.

The course of the condition is such that it tends to fluctuate, with intermittent flare-ups, but overall most patients will plateau out’ and remain fairly stable unless there is an event such as a fall, accident or further surgery, which can cause a rapid deterioration.-Smith-Fox


Arachnoiditis most commonly arises from spinal surgery (especially multiple operations), severe trauma to the spine, myelographic agents, especially the older oil-based dyes, viral and bacterial meningitis, tuberculosis, syphilis, HIV, intrathecal hemorrhage, ischemia of the neural tissues, intraspinal injections of steroids, epidural and spinal anesthesia, multiple lumbar punctures,  and blood in the cerebral spinal fluid (CSF)due to subarachnoid hemorrhaging, epidural blood patch or trauma – Aldrete

Measuring the problem

Expert Dr. Charles Burton, of the Institute of Low Back and Neck Care, Minnesota, has written extensively about arachnoiditis, and (4) has attempted to suggest an estimated figure for cases in the US, using results of an international study that showed lumbo-sacral adhesive arachnoiditis to be responsible for abo ut 11% of all Failed Back Surgery Syndrome cases. Tying this in with the number of surgeries performed in the last 50 years, and an average rate of 25% FBSS, he estimates “at least 1,000,000 FBSS cases in the US would then have been causally and primarily due to the production of lumbo-sacral adhesive arachnoiditis. If one brings in the rest of the world the case estimate would have to be doubled.”

Dr. Burton also suggests that between 1940 and 1980 about 450,000 oil-based myelograms were performed in the US every year, giving a total of 19 million*, of which he estimates 5% sustained clinically significant adhesive arachnoiditis (although probably all had anatomical arachnoiditis) as a result, which gives a figure of 950,000 sufferers in the US alone.

Pain, can’t live with it, can’t live without it

Is there such a thing as level 15, what have I done to myself….. planted a few flowers, what a mistake and how in the world did I do this before, all the time, and not ever be in pain.

I keep getting these pains in my heel, like a stone bruise but much worse, and it won’t stop, more almost like a blunt instrument is being pushed into my heel and grinder around. And it won’t stop….

Then I start getting these headaches, they are from the front of my head going around the side, on the right?? Why are these pains on the right?? All of my pain and numbness has always been on my left and now it is going to the right side. Does that me I am going to have pain everywhere from now on, wtf….

These headaches are like a slide going from my forehead to the back of my head, then back to the front, over and over, harder and harder, they go on for like 3-4 minutes and then they stop on the temple, then they just sit there, on my temple, pressing harder, kind of like the blunt instrument on my foot.

I tried to find some Sandler’s today, all of my Sandler’s got mildew on them and were thrown away so looking for a pair of sandals, not flip flops. So I stop at Shoe Carnival, by one get one half off, if I can find two pair. Found a couple to try on, still walking around before I stop and try them on. So I have 3 pair, one of them is a regular sandal the other two are like the ones I have always worn, with the strap on the big toe, but also around the back since my walking is pretty shifty these days, just trying not to fall…. so I put one on and holy crap!! I get shocks of pain from my feet up my leg to my butt, damnit that hurts, I am having spasms of pain just putting on a pair of shoes?? Ok, well that one isn’t going to work, try another. The same damn thing!!! What in the world is going on, can I net buy a pair of sandals, really. I give up, I guess I can just wear my slippers or my tennis shoes, it is going to be a crappy summer, I can feel it already.

Pain levels are going to have to change. My new normal is about a 7 so I think the scale is going to have to go to at least 12, maybe even 15.


I hate waiting, especially for results on tests…. had the MRI on my Thoracic yesterday, this was the first MRI done with contrast. The guy doing the MRI said it was ordered this way, will take about 20 minutes and he will stop about half way through to give me the contrast injection. So while I am laying there I am wondering what the difference is in the non contrasts vs contrast. My mind is reeling while I am trying to listen to music and not the machine roaring and then over the headphones the guy asks “what levels are the fusions in my neck?” I say 4-5-6-7, he says ok, back to music, a few more songs and I am rolling back out of the machine. He is standing by my right side, “ok let’s get this part done, I was looking at your outpatients reports, how old are you?”, I say 54, he says ok as he is trying to find a vein in my arm, he is having a hard time, “Where do they usually draw blood from?”, over here is better I tell him as I hold out my arm and he comes around to the other side. I tell him I have never had one done in contrast and he tells me that is shows more detail, you can see more of what is going on, if you have cancer. Damn it, he said the C word……. back in the machine, now all I can think about is that I might have a more serious problem….. we get done and he lowers the machine and puts his arm and hand out to help me out of the machine saying all done. He said he will get these over to prescribing doctor this week, I asked if he would send to my PCP also and he said he will see them since he is a CHI doctor. So now I am waiting for the results to come through on my app. But I do have an appointment with my doctor on Thursday for a shot in my bursa on the right side for my hip.

Update – nothing on my Thoracic, very strange since the rest of me is so screwed up….

Another pain day pushed through

Yesterday I went to the grocery store and Wal-Mart with my husband, I was feeling pretty good, we were probably gone a little over an hour. So an hour of walking, I made some chicken enchiladas for dinner, another hour on my feet, dinner was great, sat on heating pad an hour or so, went to bed early.

Today, holy molly, what in the world!!! I have pain going on everywhere. I swear I have daggers in my back and my feet going into my heels. It is amazing how one day you feel great and the next day everything goes to crap. The sun is out you feel awesome, the sun is out you want to curl up in a little ball and die. It rains outside same scenario. I cannot figure out what keeps it going good or bad.

And then I try so hard to be the strong one, I am OK. What am I thinking, I shouldn’t have to act like I am ok, especially when I feel so bad but I hate saying I have let myself get in this much pain, like it is my fault. I hate being where I am and have no idea how to fix this.

I really want to feel good, I would do anything to go back to feeling like I did 7 years ago. Loving life, running with my guys, throwing a football. So unfair.

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