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My Tarlov Cyst Recovery VIII

First Anniversary!

First Anniversary!

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.

The MRI taken in Mexicali, showing the Tarlov cyst (arrow) - click to enlarge

The MRI taken in Mexicali, showing the Tarlov cyst (arrow) - click to enlarge

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!

SimonMeD 2007 MRI - clearly showing the Tarlov cyst (red arrow) - click to enlarge

SimonMeD 2007 MRI - clearly showing the Tarlov cyst (red arrow) - click to enlarge

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!

Mexicali 2009 MRI letter pointing out Tarlov cyst (red arrow) - click to enlarge

Mexicali 2009 MRI letter pointing out Tarlov cyst (red arrow) - click to enlarge

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.


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10 comments to My Tarlov Cyst Recovery VIII

  • Carolyn

    hi there here are a few links to facebook groups for those that want to offer their experiences and offer advise..
    https://www.facebook.com/groups/Tarlovcyst/
    https://www.facebook.com/groups/LIFEAFTERTARLOVCYSTSURGERY/
    https://www.facebook.com/groups/Tarlovcyst/
    be nice to hear about out of country operations and outcomes and to share..
    thanks
    Carolyn

  • Julie

    Hi Gina,

    I got on Face book but I’m not too versed in it’s use. I found support group
    for Tarlov and added but I’m not sure how to get the information and ask questions to the support group.

    How are you doing? Did you have a surgery to remove?

    Thank you, Julie

  • Gina

    Hi – If you are on facebook, there are a few Tarlov Cyst groups that have been created. People talk about doctors, what helps them, what doesn’t help, etc. I find it VERY helpful and informative.

  • Julie:
    Sorry to hear about your Tarlov cyst. You are, however, lucky as it has been correctly diagnosed, and is still small. I am no doctor, but here is my advice to you. In the U.S. often post-operative Tarlov patients are often prescribed opiate drugs and are allowed to move around. This, unfortunately, promotes scarring and further damage to your spinal area. My surgeon told me to lie in bed for ONE MONTH, to allow for proper healing. It was not easy, but that is what I did. My husband, Jim, took care of re-dressing the wound, cooked, did the dishes – everything. As A result my recovery while not devoid of issues has left me in better shape than any other patient I know.
    It’s an easy operation – for me, painless. Good luck and you will be JUST FINE.
    God Bless,
    Mary Ann

  • Julie

    Oh, and funny that Dr. Rubin was mentioned as I was referred to him and other person is right, he was no help and very expensive. He charged me $500 and didn’t do a thing for me as I had to get a neck MRI first before he could do anything.

    I thank God I researched on my own and found my own diagnosis. I too, went to SimonMed and my Dr. office asst. called it a teeny tiny cyst yet a 1.7 mm cyst and the pain it has been giving has been far from ‘teeny tiny’.

  • Julie

    Hi all – I have had low back and neck pain since January of this year 2014. I have wondered if I had kidney problems. I had pain radiating down my legs making them shaky/quivering, pressure on my bladder, my doctor in Phoenix thought at first it was just muscular like I had been working out too much. Then they thought maybe female parts problem but after having MRI of Abdomen, my chiropractor saw it first, a fluid filled sac on my sacrum so I started my research and it is a Tarlov cyst, 1.7 m and another cyst. It is a longer road than I had anticipated to just see a specialist. First they sent me to a OB, then a Neurologist. Only doctor that can take care of is a Neuro surgeon.

    Because I changed to an HMO from PPO 2 months ago, it is a slower going process to get to the specialist, the right specialist.

    I have an appt. next Friday that was just booked today. I hope they can drain and my recovery is not going to be a month.

  • Carolyn:
    In Mexico, I just pay for medical services. No insurance. There is no need to go into the difficult residence process if you life in Mexico’s Free Zone, which we do, being in Baja California.Living here we don’t need to get involved with all the formalities that Americans living in other parts of Mexico do, which includes even registering or nationalizing your car. Most of the cars in Mexicali are driven by Mexicans and most of them bear California plates. It is very easy here. We could not put up with all the bureaucracy that other Americans suffer in Mexico – never mind the inconvenience and DANGER of their long drive back to the U.S. We can get to the U.S.in ten minutes with no problems.
    God Bless,
    MaryAnn

  • Carolyn

    Hi Maryann, you said you cannot get health care medicaid, but do have out of country care at all, or are you now a resident of mexico? I also wonder if the weather is easier on your pain?
    thanks

  • Gina:
    First off, I am sorry to hear that you have been diagnosed with Tarlov cysts. I am doing very well. Still take about 450 mg of Lyrica and 100mg of Tramadol each day. I have a problem with my left leg, but not a lot of pain. After I am up for a couple of hours, I can walk just fine. And I am able to walk normally. I attribute my good results that my doctor advised me to lie in bed for one full month after the operation, instead of taking opiates. Also, prior to my operation the U.S. doctor had me on steroids, which had the bad effect of rapid weight gain.
    The medications I currently take are expensive for me, and I am not insured. Fortunately, in Mexico, I can get them without going to the expense of seeing (and dealing with) a doctor. Since I live in Mexico, I cannot get Medicaid or any other insurance under the Health Care Act. Housing in America is too expensive for us ever to consider moving back to America.
    Best of luck.
    God Bless,
    MaryAnn

  • Gina

    Hi – I was diagnosed with Tarlov cysts a month ago. I have no other major issues seen on my MRI & am in pain. I’m wondering how you’re doing now after they surgery? Thanks!!

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