It’s now the one-year anniversary of my Tarlov Cyst operation on 11th Sept 2009!

It has been a long and painful journey for me.

I first noticed that something was wrong in 1996 when I developed neck pain. My US doctor prescribed Soma, a muscle relaxant, and most of the pain went away, only to increase over time and travel down to the lower back.

I now wonder why this doctor did not try to diagnose the problem?

Finally, the pain got so bad that in 2003 I decided to see another doctor, Dr. Mark Rubin, in Phoenix, Arizona. His treatment was to give me steroid shots in the neck. They worked, and the pain in my neck disappeared—but not completely—and not for long.

By 2007, I was developing severe pains at the base of my spine. I was existing on Motrin, Aleve—anything I could find at Walgreen’s or CVS Pharmacy, including the wonderful Capsicum Pain relief roll-on, which I used all the time for my lower back.

On July 24, 2007, I went back to Dr. Mark Rubin, who had given me the steroid shots in the neck. He suggested that I get an MRI, which I did on the very next day. It was done by SimonMed, who bills themselves as “the largest and most advanced medical imaging provider in the Southwest.”

Back at Dr. Mark Rubin’s office, his assistant, who looked like a dud, checked the MRI in front of us, and had nothing to say. I have no idea if Dr. Rubin, himself, ever saw the MRI.

In any event, Dr. Rubin’s solution to the problem was to give me a series of four steroid injections into my lower spine for a cost of $4,100. This was at our personal expense as we were not insured.

Dr. Rubin’s spinal steroid injections relieved the pain for about three months—then it increased.

From that point on, I took whatever I could to relieve the pain. By the middle of 2009, were living in Mexicali, and I was taking steroid pills for the excruciating back pain—pills which caused me to bloat up like a balloon.

By September of 2009, I had hit rock bottom, I was hopping around on my right leg, and using a cane to support my left leg which suffered from an intense pain which radiated down my leg from the base of my spine.

On September 3, 2009, I scheduled an appointment with a specialist in Mexicali, Mexico—Dr Carlos Maya.

Dr. Maya immediately prescribed an MRI which was done the next day, September 4, 2009, at Resonancia Magnetica in Mexicali.

The Mexicali MRI technician reported that I had a Tarlov cyst at the base of my spine!

Luckily, we had saved my old 2007 MRI from SimonMed. On it, the L3, L4, and L5 vertebrae were marked with circles indicating a possible herniated disk between L3 and L4.

What SimonMed failed to notice was something much more important – a Tarlov cyst (see the red arrow)!

With Dr. Maya’s explanation, even Jim and I could see the Tarlov cyst clearly on the old SimonMed 2007 MRI!

On the frame immediately to the right of where SimonMed marked the vertebrae, is a light oblong area – that is the Tarlov cyst – plain for anyone to see.

SimonMed had not marked it!

Thank God we came to Mexicali, and found a competent doctor, and an MRI service that was able to interpret their own MRIs—something that the expensive Dr. Rubin, and SimonMed were apparently unable to do—or did they even give a damn?

I can imagine how the actor Michael Douglas must feel, after numerous visits to his own US doctors who failed to diagnose the tumor in his throat! Michael Douglas, I am sure, gets the best medical care anyone can afford. How do you like that? No wonder his wife, Catherine Zeta-Jones was furious! We pray that he will make a full recovery.

On September 11, 2009, I had a three-hour long surgery conducted by Dr. Maya with a neurosurgeon in attendance. They found not one, but two Tarlov cysts which they drained and treated. It was near my S1 spinal nerve.

I woke up from the operation with NO PAIN at all!  How mind-boggling and awesome is that?

The lower back had gone away completely!

Now came the difficult part—the post-op!  Dr. Maya ordered bed rest for four weeks to avoid scar tissue, and I obeyed.

This was unlike a certain US surgeon who “specializes” in Tarlov cysts, and who dopes his patients up with addicting Vicodin, and lets them move around immediately after the operation – generating scar tissue. I guess he wants to operate on them again (and again), or charge them for prescribing more opiates to feed their habit.

I was very lucky to have moved to Mexicali, and lucky to get the right surgeon, Dr Carlos Maya.

Who says medical care in the US is good? It is my Constitutional opinion that SimonMed didn’t do the job, and neither did the very expensive Dr. Mark Rubin.

With Jim’s fantastic dedication and help, the wounds from my operation healed completely.  There were ups and downs, but the trend was always up.

One year after my Tarlov cyst surgery, I can walk without a cane, pain-free. I know that my S1 nerve will take time to regenerate. I don’t put a lot pressure on my left foot, and avoid carrying five pounds of anything!

I still cannot walk around a huge place like Wal-Mart and look for items, or stand for long periods of time, as the pressure gets to my S1 nerve. It’s not pain, just nerve discomfort coming from the S1 nerve that I feel now.

My current doctor, Martina Gallardo, a brilliant lady doctor in Mexicali (of course) has given me a clean bill of health.

She pressed every inch of my scar and spine, no pain…yeh! Dr Martina wants me to do simple leg lift exercises to strengthen my thigh muscles. I do them every night and it’s making a big difference. Hey, if it means I get slimmer thighs, then I’m there, with Jane Fonda!

These are very simple leg exercises; not the active physical therapy often recommended in the US which can only damage you after Tarlov surgery.

That’s where I am right now. I am not on any opiates; I still take my Lyrica, and Soma daily, along with Aleve or Motrin, when I need them.

I will continue to blog about it.

My last Tarlov cyst recovery report to you was on 14th of June 2010. I am now in my 11th month post-op Tarlov cyst surgery now and taking Lyrica and Soma.

In the past I took care of our cat, Twiggy, by shaving her. For a while after the operation, I could not really take care of Twiggy—now I can. For a long period, I was shaving away her hair, and cleaning her everyday. This routine stopped when I got too ill, was in pain and could not walk.

Twiggy is a Ragdoll breed of cat. She has a long body, short legs and long fur. Ragdoll cats are known for having dog-like personalities. That’s my Twiggy. She will follow Jim around, and even step on his foot, to get his attention, while giving out a big “meow.”

Twiggy also has a bad temper. She does not tolerate strangers. Twiggy is a huge and heavy cat, as are most Ragdolls and weighs about 20 pounds. With her long body and short legs it is impossible for her to clean herself.

When I got really ill, Twiggy usually got an infection. Our wonderful super veterinarian, Dr Rafael Minero in Mexicali would put her to sleep (temporarily) while his nurses clipped and cleaned away her fur and infection.

Now that I am much better, I got the clippers and pinned Twiggy down with my left leg, while sitting slightly bent over on the kitchen floor. I managed to shave her just halfway and gave Twiggy a thorough cleaning. It took me a good 30 minutes to complete this task. Twiggy ran off immediately and I sat on the kitchen floor with my leg left extended out.

After I had finished, I got up and my left leg was numb. Now that was an interesting moment!

After I sat down on the sofa, my left leg came back to normal within 15 to 20 minutes. I told Jim about it.

“Well, MaryAnn, you’ve been bending over cleaning Twiggy for a good half hour. I’m sure that triggered off your S1 nerve!” said Jim.

So, anytime my S1 nerve is shaken or stirred my left leg is affected.

These Tarlov cysts love the spinal cord and reside along the S1 to S5 nerves at the base of the spine. After Tarlov cyst surgery, one has to allow the affected nerves to heal and to calm down.

Physical therapy on any Tarlov Cyst survivor is not good idea. So, I just take short walks for exercise.

In the U.S. where Vicondin and other opiate drugs are popular, those who have had the operation feel great, when they really aren’t. They can let themselves move around and exercise too much – and the result can be lifelong pain, and more operations.

In Mexico, Vicodin and similar opiate drugs like codeine, hydrocodone, and the current favorite OxyContin are unknown. Oxycontin is approximately 1.5-2 times as potent as morphine when administered orally. These drugs essentially generate morphine in your system and are addictive.

Insofar as Tarlov cyst operations go I think I am as good as it gets. I will continue to keep everyone posted.

God Bless!

Just a quick update on my tarlov cyst recovery.

When I was able to sit after my Tarlov cyst operation, I always had a small cushion on my lower back. I would do the same in the car, or when watching TV.

Only a week ago, I felt my spinal cord nerve was hurting me. Was I going backwards?

So, to fix myself up, I brought out my well-used tube of Capzasin pain relief crème—real stingy stuff which I used all the time, when I still had my Tarlov cysts. I applied it down my spine. Oh dear, it really burnt!  I had no idea that Capzasin ointment was so strong? I felt pain in my spinal cord nerve.

I freaked and called out to Jim, “Jim, what’s wrong? Why is it so tender around my spinal chord?—help!”

I lay flat on the bed, chest down, while Jim prodded my spine.

“Here? Is this where the pain is?” asked Jim.

“Yes . . . right there!” I said.

“I see some ointment, Maryann . . . what in tarnation are you doing with your back?” said Jim

“I had some discomfort on my spine, so I rubbed some Capzasin pain reliever on it, and now it’s worse! What’s happening?”

“Stop with the Capzasin pain thing, that’s real strong stuff,” said Jim.

“Are you still using the little pillow for your back?” he asked.

“Well, yes.”

“Well, stop, using that pillow; I think it’s putting pressure on the nerves just where they come out of the spinal chord,” said Jim calmly.

I stopped using my trusty little back pillow, and within two days, I began to feel great!

“Jim, I was using my little pillow when I was sitting up to prop up my lower back,” I said, “and now that I’ve stopped using it, I feel fantastic—no nerve pain!”

“Looks like the pillow was pushing against the S1 nerve right where it comes out of the spinal chord, and now that you are getting better-you don’t need that pillow no more!” Jim said

Well, now, no more little pillows to prop up my lower back.  The nerve pain is gone and I am doing fine. How about that?

Nine months post-op, and things begin to change.  Day by day, I can feel the tender area around my incision getting smaller, as I get better and better.

I am walking pain-free, and my medications are Lyrica and Soma.

My back, which needed propping up, now no longer requires it.

For showers, I have my chair to sit on. I use liquid soap and a small towel and am careful, real careful, not to slip.

Who’s a better doctor than my Jim?

My last Tarlov cyst recovery post was made on February 14, 2010. I am now nine months into recovery.

So here’s what’s happening. I can walk PAINFREE, but I can’t run down the street.

I walked as fast as I could when Jim called me out of our bedroom when the 7.2 earthquake hit Mexicali. I reckon for living in an earthquake zone, I am doing pretty well.

I am now writing this, sitting in an office chair, no longer having to limit myself to my reclining armchair. There is no longer any pain in my tailbone area now – no more using the seat cushion!

Jim and I take turns preparing meals. Before it was only Jim.  Matthew looked after our pets.

I used to have a bar stool to sit on while stirring the pot over the stove. No need for that anymore! Now, I can stand and prepare meals, just like I used to.

What I can’t do, are work-outs or exercises. So I don’t really work up a sweat the way I like to.

But we’ll will wait and see. I can even fix up my hair, and put on my make-up.

(At Sinapsis Cafe, the girls were really sweet, and loved my eye-make up!  Most Mexican women wear makeup all the time, and they are all just beautiful. I guess that’s the Latin way.)

I am still watching my recovery from my Tarlov cyst surgery very closely. I can sit anywhere now. I even rolled over in our bed to give Jim a hug about a month ago, but that showed me that I was still in recovery.

I could feel the healing area around the operation site getting smaller, like a shrinking circle! As each month goes by, the circle gets smaller.

After the operation Dr. Carlos Maya gave me a prescription for three antibiotic shots.

Several months later, the area around and under the incision still didn’t feel right.

I told Jim who said, “‘MaryAnn, you probably have a staph infection?”

“How do you know about staph infections?” I asked.

“Must’a read it somewheres,” said Jim. “Look MaryAnn, staph infections are all around, and you still have that inflamed nerve,” Jim said firmly.

He continued, “Here’s what we’re gonna do. I have the name of an antibiotic; it’s real strong, so let’s giddyup down to Mas Barata, and get it.”

“OK. Is it pills I should be taking?”

“Nope, shots” said Jim.

We took off to La Farmacia Mas Barata immediately. I sat in the truck, while Jim, who speaks Spanish, went in and talked to a smart looking lady behind the counter. They checked over a medical book, and, in no time, Jim came out with a bagful of stuff and said, “Right, here’s what we need to clear up any darn staph infection, Maryann. They call it Trixona, here in Mexico.”

“Just in case Hon; we wanna make sure that every base is covered,” said Jim as we headed to the Sanatorio Santa Monica, a small hospital in our neighborhood.

There, the nurse will give you a shot for only 30 pesos ($2.50).

In Mexicali, an ampule for a one gram shot of Trixona (ceftriaxone), the antibiotic Jim decided on, costs 120 pesos ($9.60).

For the first seven days, Jim decided on one gram each day. For the second week, it was two grams, each day.

This was a big shot and was given with a large syringe. For the 14 day treatment, I changed sides on my buttocks for each jab.

The cost of the entire treatment came to a total of $201.60 for the antibiotics. Combined with $35 for the hospital shots brought the total to $236.60. And no doctor fees!

In the US, such a treatment for a staph infection would cost a fortune!

From the first shot, I could feel something going on; some of the pain and inflammation from the incision site was going away. It just got better with each shot, and by the end of Jim’s treatment, I felt a huge improvement.

“Hon, as I suspected, you probably had a staph infection,” said Jim.

“Jim, I think you were right – I feel so much better now,” I said. “How did you figure that out, and how did you decide on ceftriaxone?” I asked.

“Twarant nothin, just a little research with Dr. Internet,” answered Jim. “Look,” he continued, “all a doctor can do is either slice you up with an operation or give you a prescription – in Mexico, you can do your own prescriptions – no doctor needed.”

My Jim can be so brilliant!

I put myself back on Lyrica and Soma.

My decision. I don’t need a doctor or his prescription to tell me what to do, at this point in the game.

Lyrica helps with the nerve recovery and the Soma helps to relax the muscles.

Of course I pace myself. When I overdo errands, I do get very tired and find I have to rest up for one full day.

It takes us one and half hours to cross over to the US town of Calexico because of the line going through US Customs and Border Patrol.

In Calexico, we usually check our mail, and then go off to Denny’s for a great breakfast. Jim and Matthew always order the Grand Slam breakfast, and I make it a point to eat more proteins, and less carbs. So I order a double bacon and cheese burger, with french fries a dill pickle, followed by a large chocolate milkshake! A treat for me!

The less weight I carry, the less pressure on my spine. I had really taken my spine for granted during the last 40 years of my life, lifting, running, falling down. At one point, I started to wonder what might have caused my Tarlov cyst. I recalled that some years ago, I had knocked the back of my head really hard. At the time, I thought to myself, “Oops, I hope I’m OK!”‘ Well, I think that may have been part of the cause of my getting two Tarlov cysts.

I do get into a funk, of course!  Many times, when I wake up, I think I can just run up to the bathroom, run out and do errands so quickly, and now, after the Tarlov cyst surgery, I can’t do that.  That gets me very down. I can’t hike, play tennis or tango right now. I hope I can get to the point where I can move fast enough to play some tennis with Jim.

That’s the frustrating issue I face everyday as a Tarlov cyst survivor. However, I am pleased with my 9 month recovery, and Jim says he can see almost daily improvements in the way I walk.

When we last went to Denny’s, Jim and Matthew were very surprised to see me slide out of the truck and walk, with no signs of a limp. “You’re walkin like normal, MaryAnn! I’m impressed!” said Jim. So there is good news for all Tarlovians who are angry and frustrated.

Give the healing time! Be patient (and watch out for post-op infections).

Yes, thank the Lord, I am doing very well – no pain medications needed.  I will continue to keep all my Internet friends posted on my recovery.