Tarlov Cysts: Teach the Teacher

When a cyst has been located on your spinal cord,  size, nerve compression and location will usually bring froward the question of  "are these cysts symptomatic or asymptomatic?" That decision can be made by determining if you present any, most of, or all of the following symptoms. Does the following list accurately explain any of the pain or complications you experience personally.


Symptoms of expanding/enlarging cysts occur due to compression of nerve roots that exit from the sacral area. Symptoms may include the following, dependent on the location of the cysts and the section of the spine they occur:

• Pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• Pain in the chest, upper back, neck, arms and hands
  
• Weakness and/or cramping in legs and feet / arms and hands
  
• Parasthesias (abnormal sensations) in legs and feet or arms and hands, dependent on cyst locations
  
• Pain sitting or standing for even short periods of time
  
• Pain when sneezing or coughing
  
• Inability to empty the bladder or in extreme cases to urinate at all
  
• Bowel or bladder changes, including incontinence
  
• Swelling over the sacral (or cervical, thoracic, or lumbar) area of the spine
  
• Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
  
• Headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• Dizziness and feeling of loss of balance or equilibrium
  
• The feeling of sitting on a rock
  
• Pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• Vaginal, rectal, pelvic and/or abdominal pain
  
  
  

The sciatic nerve is the longest nerve in the body and it originates at the S2, S3 level of the spinal column. It crosses the buttocks and extends down the leg into the foot. Sciatica is a syndrome that results in burning, tingling, numbness, stinging, electrical shock sensations in the lower back, buttocks, thigh, and pain down the leg and foot. Severe sciatica may also result in weakness of the leg and foot.

**Symptoms list Copied and provided by the Tarlov Cyst Disease Foundation. Link to the Foundation can be found in the link lists to the left of this blog page.**

Some of the issues I have personally faced include:

• repeated urine infections
• blood in the urine
• urinary stasis in both kidneys, marked more on the right than left kidney.
• urinary reflux
• bowel or bladder changes, including incontinence and loss of feeling
• pain in lower back (particularly below the waist) and in buttocks, legs, and feet
  
• pain in the chest, upper back, neck, arms and hands
  
• weakness and/or cramping in legs and feet / arms and hands
  
• soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh with cysts in the sacrum. Same feelings in upper sections of the spine dependent on cyst locations
• headaches (due to the changes in the CSF pressure) and sometimes accompanied by blurred vision, pressure behind the eyes and optic nerve pressure causing papilledema (optic nerve swelling)
  
• dizziness and feeling of loss of balance or equilibrium
  
• the feeling of sitting on a rock
  
• pulling and burning sensation in coccyx (tailbone) area, especially when bending
  
• Sciatica
  
• vaginal, rectal, pelvic and/or abdominal pain 
  
  
  I'm sure you can see that when the symptom list is compared to my personal list the similarities are quite obvious.
  
  
  Review the symptom list and compare your pain or personal experiences to that list to help with determining if your cysts are indeed symptomatic. Be as honest as you can to ensure accuracy and that your claims can be scientifically supported by the specific location, size and the afflicted and compressed, nerve roots. 
  
  
  This experience could provide you with legitimate knowledge, and allow you to explain in plain English when describing your issues, and your beliefs to your physician. Although Tarlov Cysts are typically deemed to be asymptomatic, science cannot be ignored in the face of accurate and scientifically sound information.
  
  
  Sometimes we, the patient, have to be the teacher. To be a teacher you must be informed.
  

Another Day, Another Change

I think I've adjusted to the changes that occur with this illness and the challenge of new symptoms almost everyday.

Last week I pushed myself a little too hard, I think. It can be a little difficult to tell when I'm blessed with the  pain numbing gift of Dilaudid. Believe me, I'm not downing pain medication, not at all. If anything I wish we could find some consistent, dependable pain management for my constantly increasing pain, but right now we're still trying to find what works, what doesn't and what might.


Shortly after what I assume was overdoing it (ODI), perhaps a day or two later, a new limitation showed itself. A new limitation that totally changed things.

Everyday I walk my little Jack Russel Rennie. Usually we follow a regular route in the back of the apartment building where I live. I swear it's never been an issue, if anything it was nice way to wake up in the morning, break up my day, or to end what seemed like a long and endless, pain filled day. So I decided this time to take him to a different park and en-route I found myself having to sit four times, more than I've ever been required to do.  


In the recent past I'd been able to walk that far with only one or two stops, but this time it was a mandatory four. I know it would have been even more if I'd given in to the pain and sat again. I made it back home, rested and the pain from the walk seemed to fade, leaving behind stiffness that I could live with as long as I didn't do too much. 

The next day I did the typical normal morning walk with Rennie and when we were half way through I began to experience an excruciating pain in my low back and left hip. The path of pain felt like a nerve pinch sending what felt like an electrical shocks down to my foot, forcing my foot to turn inward. I was forced to rest for a quite a long time waiting for the pain to ease and I sat on a bench with Rennie at my feet, staring at me. I think he knew something was wrong.

As time passed I became strong enough to face the pain and walk to the building. As I walked I kept my eyes focused on the door, staring at it, feeling like it moved farther and farther away as I limped home suffering from severe pain in every step. I made it into the apartment door and walked straight to the safety of my bed, while dropping Rennie's leash to the floor and calling out to my Mother for help.


That was a moment of change. I didn't realize it then, but as my Mom removed my shoes the tears filled my eyes. I knew this would be another day of resting and trying to recover. Another day of my life lost to this disease while I became more and more fearful of walking too far on my own. I knew things where getting bad, but I didn't think it would get this bad. I guess I was in denial and still holding onto that small glimmer of hope. The hope of finding, or being offered a solution. I prayed that one day that remedy would come.

The following day, the day before my Grandsons 2nd birthday I endeavored out the door on a mission. I walked to the mall, a short 10 mins away, accompanied by my nephew and thankful that I wasn't alone. I made it into the mall with that now common and typical pain slowly building. I knew where I was going, knew what I wanted and didn't spend much time getting it and heading back out the door, but just as were were leaving the store the same pain as yesterday came on extremely strong. Once again I couldn't put pressure on my left leg without that electrical shock in my hip shooting down my leg and into my foot. I leaned on my strong nephews shoulder and limped to the door while every step increased the pain. We stopped near the exit and as I sat on the bench I downed some cold water, accompanied by my pills. We called for a taxi and every moment seemed like forever. Every single second of having to stand upright made the pain even more severe. I stared at the sidewalk wondering, "would it be too strange if I laid on the sidewalk and curled into a pain-filled ball?" Thankfully the Taxi  appeared before I had to resort to such embarrassment  and we were home within minutes. 


Once again, just like the day before, I hobbled directly to my bed where my Mother once again removed my shoes and that's where I remained for most of that day. Another day of my life lost to this disease. The days I was losing were certainly mounting!

These experiences taught me a valuable lesson. A lesson I'd have to face eventually; I was time to get a walker. I needed something to rely on. Something to help me maintain whatever independence I could as these cysts took away my freedom while I wait for surgery.

This disease isn't just filled with pain or lost days. This disease is also filled with challenges and loneliness. It's a disease that can easily generate fear. Fear of being alone, fear of walking too far from home and also the fear for my future and how much more I could handle. 


Now I'm more cautious of what I do that requires walking. Now I have one more thing to add to the long list of limitations and complications. Now I have one more thing to thank the cyst and the confused Ontario and Canadian medical system for. Thanks for taking one more thing I have always loved and making it a fear rather than the pleasure it had always been.

I know I'll mange, that's what I always do! I will not let this stop me from being me and I will not let this take away the things that make me, me. 


The lessons we learn overtime are all we have to depend on. We have to keep moving forward, with and by whatever means necessary. Things may have to be modified, but it never has to end.

I do hope we can change this medical system in the future to help them understand that Tarlov Cysts are NOT an incidental finding! These Cysts are real, they cause real pain. They can change life and turn it from a learning journey into a never ending challenge. 


I'm still learning, but I'm getting a little wary of the never ending challenges with no professional, medical support. 


A GP really can only do so much.

OHIP Application

So today was the deadline for applying for Out of Country Care coverage; that is, it's the last day that applications received before April 1st will be adjudicated under the new regulations.

So I did it. I managed to get the application faxed in today and now it's just a matter of wait and see.

Wow.... knowcks the wind out of me just to think, "what if I do get approved?" Am I really ready?

One day at a time... that's all I can do is take it one day at a time... I'll let you know how simple (doubtful), or our difficult (more likely) the process goes.

Wish me luck!

OHIP Changes to Out of Country Care

On Friday May 11th, 2011 The Globe and Mail reported on a case where an Ontario Tarlov Patient had won an appeal to be covered under OHIP's Out of Country Care (OOC) program.


The news story informed readers of the four day winning battle Rose had fought and also provided comments from a local, Ontario Neurosurgeon, Dr. Charles Tater who stated, "Rose could be treated in a timely fashion in Ontario. He had treated five patients over his career of nearly 50 years and he believed other neurosurgeons treated a similar number of cases."


Lawyer Perry Brodkin commented on the new changes saying, “This legislation makes patients guinea pigs because they’re not going to get the foremost expert in the world,” He also added that, “Under the new rules, that surgeon may have never performed the surgery or may have performed it only once.”


The news article and the suggestion of new rules caused a wave of concern to those diagnosed with symptomatic Tarlov Cysts. We were all worried about how those changes may prevent Tarlov Patients, like Rose, from receiving experienced treatment in future.


Neurosurgeon Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose’s Tarlov cysts, said in a letter entered as an exhibit before the appeal review board that the surgery is extremely intricate, complex and a “very scarce commodity.”


Dr. Feigenbaum also stated, “There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery,” he wrote. “I am one of those surgeons.”


Rose's application for OOC had been refused on application, but after a four day appeal Rose's application was approved.


Reta Honey Hiers, president of the Tarlov Cyst Disease Foundation, testified during the appeal saying, "no Canadian physicians were on her list as having expertise to operate on such cysts; the one Ontario surgeon that was listed had asked to be removed." Which leaves many to wonder where these program changes may take future patients in need of experience to treat this rare diagnosis.


In an email received today from Perry Brodkin, he supplied a link which I've attached to this post that will bring you to the new list of amendments. 

(Click on the Post Caption in RED at the top of this post to be linked directly to the E-Laws site.)

However, according to Mr Brodkin one question remains, "At this time the major issue is whether the changes apply to a person who has appealed to the Health Services Appeal and Review Board, but has not yet had his or her hearing before the Board. The changes do apply to a person who has not had an Ontario physician complete and submit to OHIP a Prior Approval Application for Full Payment of Insured Out-of-Country Health Services before April 1, 2011."

In response to Mr. Brokins question the Ministry of Health and Long Term Care responded with the following.

"Any Health Services Appeal and Review Board (HSARB) appeals received prior to the regulations taking affect (April 1, 2011) will be adjudicated based on the old rules. Any application for Out-of-Country (OOC) health services approvals received prior to April 1, 2011 will be based on the old rules. Any application denied based on the old regulations and then appealed to HSARB will be adjudicated based on the old rules (in other words:  as long as the application was received prior to April 1, 2011 to the General Manager of OHIP or to an OHIP Office, any related HSARB appeal to that decision will be based on the old rules)". They also added, "All applications are date received stamped upon receipt; therefore, even if the application is reviewed after April 1, the review/appeal will be based on the old rules".

The battle for expert care is far from over and if you are in need of further information, guidance or legal support, please contact:

Perry Brodkin
Barrister & Solicitor
515 Rosewell Avenue, Suite 304
Toronto, Ontario M4R 2J3
Tel: (416) 482-3482
Fax: (416) 484-8290
E-mail: perry.brodkin@rogers.com

(all quotes in this posting were taken from the Globe and Mail article, and also from direct email contact with Mr. Brodkin. For that I am grateful. There are still a lot of professionals willing to help us fight for what we require as patients. I am grateful for their ongoing support.)

Visiting the ER or Emergency for Chronic Pain

Posted By: Sharon Jones Gillece

Visiting the ER or Emergency for Chronic Pain March 26, 2011 webmed article Visiting the ER for Chronic Pain How to reduce stress and suspicion when seeking chronic pain medications. By Katherine Kam WebMD Feature Reviewed by Brunilda Nazario, MD You’re a chronic pain patient who takes several prescription narcotics to control your symptoms. Then one weekend, excruciating pain lands you in the emergency room. There, a doctor grills you about your medications, in part to make sure that you’re a legitimate pain patient, not someone seeking drugs. What can you do to help the ER doctor to believe you?   It’s not always easy to tell chronic pain patients from drug-seeking patients, says Howard Blumstein, MD, FAAEM, president of the American Academy of Emergency Medicine and medical director of the North Carolina Baptist Hospital emergency room. Patients with chronic pain visit the ER for various complaints, he says. “Some of these patients have demonstrable disease, like sickle cell disease or chronic pancreatitis. I think that physicians are more likely to give them the benefit of the doubt when they come in and say they have pain.” “Other patients are prone to have problems that you can never objectively demonstrate, like chronic back pain and chronic headaches,” he says. “We just have to take their word for it. You can’t look into anything and tell whether or not they’re actually having pain.” Regardless of which group patients fall into, Blumstein says, “there are some patients who, because of their behavior or their frequent visits, still get labeled as being addicted to drugs or abusing drugs.” What type of behavior raises suspicions? “Patients will come in and be very demanding, get into fights with doctors and nurses because they don’t think they’re getting enough pain medicine, and that causes the health-care providers to become suspicious of the patient’s motives,” he says. Or the patient may ask for a specific narcotic like Demerol, or say they’re allergic to non-narcotic pain relievers. Understanding Suspicion in the Emergency Room “In most cases, it’s probably unfair to the patient,” Blumstein says. But emergency room doctors have strong motivations to carefully screen out drug seekers. They want to thwart drug abuse and any chance that narcotics will be diverted, for example, sold to strangers, or exchanged for illegal substances. “They have a high street value,” Blumstein says. ER doctors have one useful tool, though. Currently, 34 states have prescription drug monitoring programs that allow doctors to check a patient’s prescription history online. “I can look up a patient and see all the prescriptions that have been filled for controlled substances,” says Blumstein, who practices in North Carolina. Doctors can use the database to corroborate a patient’s story. Or they might see patterns that warn them to probe further for drug abuse, for example, prescriptions from numerous physicians that have been filled at multiple pharmacies. “It is an unbelievably great tool for physicians,” says Eduardo Fraifeld, MD, president of the American Academy of Pain Medicine. But ER doctors also rely on instincts, Blumstein says. “It’s all perception. It’s the whole gut impression that the health-care providers get about you.” So how can a patient with chronic pain convince the ER staff that his or her complaints are legitimate? Here are a few tips from the pain experts: 1. Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room, Blumstein says. But many people don’t have a doctor, he says, “and it looks really bad from a doctor’s point of view when a patient comes in and says, ‘Oh, I have this terrible chronic pain,’ and the doctor says, ‘Who’s taking care of this terrible chronic pain?’ and the patient says, ‘Oh, I don’t have a doctor.’” “Before you get into a situation where there’s an exacerbation of your condition, make sure you have a regular doctor treating you,” he says. 2. Show that you’ve tried to contact your regular doctor before you go to the ER. If you’ve been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is, Blumstein says. Even if the pain struck just that day, make an effort to contact your regular doctor first, he suggests. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them, Blumstein says. “At least you’re showing you made an effort. You’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.” 3. Bring a letter from your doctor. “A letter from your physician, with a diagnosis and current treatment regimen, is a reasonable thing to carry with you,” Fraifeld says. “Particularly if you’re on chronic opioids in today’s atmosphere, I would highly recommend that to patients.” Make sure the letter has your doctor’s name and phone number, Blumstein says. That way, if ER doctors want to contact your physicians, they can. A letter is especially useful if you’re traveling or going to a hospital that you’ve never visited before. It’s fine to bring medical records, too, Fraifeld says. But don’t overdo it, Blumstein says. “I’ve had patients come in with tons of records -- I mean, you could measure the stack in inches. It just looks like you’re going overboard.” 4. Bring a list of medications. Bring a list of your medications, instead of relying on memory, Blumstein says. Fraifeld takes it one step further and suggests that patients bring the drugs. “Take all the pain prescriptions with you -- the actual bottles -- not just the list,” he says. “[Patients], I’m sad to say, highly contribute to their own problems by not even being able to tell physicians exactly what they’re getting and when they got it and whom they got it from.” 5. Work cooperatively with emergency room staff. “It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. It calls negative attention to yourself,” Blumstein says. “And it is unfair, because you might be having agonizing pain, and why shouldn’t you speak up for yourself, right? But a lot of staffs don’t like it and they don’t respond well to it. So rather than demand things, try to work cooperatively with the staff.” COMMENT FROM SHARON My personal opinion on this is to have a copy of your regular monthly prescriptions and also bring the bottles. I usually bring my most recent prescription with me when I am travelling anywhere, for the airport staff and in case of emergencys. When I was admitted to Hospital 2 years ago with acute pain from Gallbladder after the Doctor had visited me at home and was sending me to Hospital in an Ambulance a family member remembered to bring my recent prescription, Its not the actual prescription its the copy and reciept, from the Chemist (Pharmacy). Make sure you always get a reciept when collecting your prescription. I don't know how it is done in the US and other countries, but here in Ireland, the reciept will be a copy of the original. Love to all Sharon