My Story: A Treatment Journey For Chronic Pain

My Story: A Treatment Journey For Chronic Pain

Gracie Bagosy-Young

Gracie Bagosy-Young

Since my article for the National Pain Report about giving up pain medication, I’ve been asked “How have you managed your pain without the medication?”

My post-surgical treatment journey started out with occupational therapy and a personal trainer. I have always believed that I could stave off just about anything with vitamins and hard work. I had a lot to learn! My physical journey, however, was only half the battle.

The other half?

What was inside of my head.

What good was I if I couldn’t go to work anymore? I had fought so hard to earn my degree and land that great job. Suddenly, I couldn’t even lift pans to bake. My daughters had to help me wash my hair in the sink. Simply brushing my teeth was a painful struggle. As time dragged on, it only got worse.

It was time to think about trying something different.

Together with a really great doctor, I moved forward onto trying lidocaine gel. Not only was this a sticky mess that never did soak into my skin, but it was horribly difficult to apply since I have allodynia which is hypersensitivity to touch.

The agony of applying it was not worth whatever relief it promised. The same could be said about the custom-compounded Ketamine cream. I had high hopes for this goldmine in a tub! At $200 per ounce, I fought my insurance company to pay for it. I tried really hard to tolerate the physical application process in order to see if it would benefit me before its brief 30 day expiration.

It didn’t.

Next came the TENS unit. I think that was a means of distraction. I still don’t quite understand that one, but my insurance company paid a lot of money for that little guy! ?

It was at that point that my doctor strongly recommended that I try the meds to “break the cycle of pain” as I referenced in my last article. Many of you have written to me asking if I tried other combinations of meds before I gave up. Yes, of course I did. I have a fantastic doctor that works as my partner. There were the nerve stabilizers, narcotics, anti-depressants, sleep aids, anticonvulsants, steroids-many different kinds in many different combinations and dosages. The meds simply were not the solution for me.

I then went to the Stellate Ganglion block. That was a pretty scary experience for me. I didn’t realize that I would not be sedated until I arrived. Whoops-someone missed that memo! This process involves sticking a big needle through the front of my neck, while lying on my back, to get to the front side of my spine with a shot of lidocaine. They had to be sure to go to the side of my voice box and my trachea. They told me when I could breathe and swallow. I was instructed to “blink hard” if I felt something odd. I could see my reflection in the Fluoroscan, which was really the last thing that I wanted to see! I looked like Frankenstein with that needle sticking out of the side of my neck! The process seemed like it took hours, although I am sure it didn’t. They warned me to let them know if my mouth tasted like metal. What does metal taste like? They also warned me about what my face would look like. Whoa! Half of my head was paralyzed! Luckily that was temporary. The block didn’t cut the pain either-but what an experience!

Next I tried a lidocaine infusion called a Bier Block- also very scary! I needed a tendon surgery on my CRPS arm, so they combined the surgery and the Bier Block all in one. For this procedure, they put a double cuff at the top of my arm to stop the blood flow, punctured my arm in several places, and used a spiral motion to drain the blood from my arm. They then filled my arm up with lidocaine while quickly performing the tendon surgery. There is a method to this madness. The science is timed. They know exactly how long it will take my body to metabolize the lidocaine once they let the cuff go and allow the blood to flow back into my arm. This was successful and did provide me with two weeks of reduced pain levels. The problem is that it was quite an invasive procedure to endure every two weeks for the rest of my natural life.

It was suggested that I have a Spinal Cord Stimulator implanted at this point.. As much as I hated having CRPS in my arm, I could not bear the thought of having it in my spine as well. The SCS surgery opened up an opportunity for the CRPS to spread to my spine. I understood the risks and benefits and decided against that option.

I wanted a less invasive treatment option and found Calmare Therapy. This seemed like the perfect choice for me! It was drug-free and non-invasive. Calmare Therapy is an electrical stimulation that works to scramble the pain signal in the brain. It tricks your brain into thinking you are not in pain. I was skeptical. I went in there thinking it would not work. To my surprise and delight-it did! It reduced my pain to virtually nothing while I was connected. Once the machine was turned off, the pain returned. It took quite a few treatments for me to have reduced pain while not connected to the machine, but it worked.

I used that technology for two years. So why did I stop? In my case, Calmare provided exactly what it advertised-pain relief. Anyone with CRPS knows that this disease is so much more than simply pain. Calmare was not able to address the horrible exhaustion, it was not able to alleviate full body affects I feel every time the barometric pressure changes, it was not able to help my body heal from injuries, and it could not prevent the inevitable and unpredictable flares. I was still sick. I was grateful-but I still kept looking through research and my daily advocacy in our support groups.

During the late Spring of 2014 while planning the Power of Pain Midwest Pain Summit, I learned about a new treatment. I went to The Neuroscience Center in Deerfield, Illinois to solicit them to be sponsors for our Conference because I knew they offered Hyperbaric Oxygen Therapy and I wanted that represented at our Conference.

While asking Dr. Steven Best for money, he casually mentioned that he had “TMS w/Ketamine” that could effectively treat pain. “Wait-what is that?” My thoughts began to ramble-out loud. “I’m not doing ketamine. That is a horse tranquilizer!” Followed by, “You said TMS w/Ketamine, what is that and why haven’t I heard of it?”  “Is it really possible that there is a treatment that I haven’t heard of?”  To make a very long story short, he explained to me that he had combined two treatments, Transcranial Magnetic Stimulation and IV Ketamine simultaneously, and had patented that technique into a new treatment. The two have a synergistic effect on each other. We sparred about it for a while. I didn’t believe him. True story! Clearly as a doctor he knows a lot more than me and I was not able to argue with him for long, so I ended up challenging him to “prove it” to me.

I was irrationally terrified of the ketamine portion of the treatment. The TMS didn’t intimidate me. I went in to the clinic and watched 16 different patients receive treatment (with their permission of course) and I interviewed 4 of them. Go ahead-call me a big chicken! It is all true! The thought of putting a dissociative drug into my body, and not being in complete control, froze me with fear. You know how this story ends. I conquered my fear and became a patient.

My desire to get better was bigger than my fear of the unknown.

This treatment is not a quick fix, by far. There are some diagnostic tests done first. They take a look at the brain to see how much damage there is and what needed fixed. No one else had done that! Such a bittersweet baseline. We can’t fix it if we can’t see it’s broken, but it stinks that it is broken! This treatment starts in the brain, which is the source of the problem. It works on the inflammation in the brain. Once the brain is functioning properly, then the brain can begin to heal the body. It was a 6 month long process that took a lot of commitment, but every symptom that I had has been lessened.

I am not cured. Such a thing does not exist at this time, although I will never lose hope! I still need to be careful to take very good care of myself and feed my body with rest and good nutrition. Since these treatments, I am now able to go without wearing compression sleeves or braces to keep the world from touching me, I can wash my own hair, I can feed myself with that arm, I can dress myself without assistance, and I can achieve almost a full extension of that arm. You can no longer see my disability, although I prefer to call it a “challenge.”

It’s a long story – but most journeys with chronic pain are long ones, aren’t they!

Follow on Twitter

@NationalPainReport

@GracieBagosy

 

There are 7 comments for this article
  1. Gracie Bagosy-Young at 9:04 am

    @Catherine Nichols Pogorzelski- Thank you for your comments and your concern. I had SPECT Brain Imaging done. SPECT Brain Imaging has nothing to do with contrast dye. If you would like to learn more about SPECT Brain Imaging, you can visit http://www.pathfinder.md. This is the clinic located inside of The Neuroscience Center where I had my imaging done.

  2. Gracie Bagosy-Young at 9:01 am

    @Dr. Mandel- Thank you for your kind comments. Please note that the treatment that I receive is different than what you are offering. This is Combination Therapy; not straight ketamine infusions.

  3. Gracie Bagosy-Young at 8:59 am

    @Mary Waters- To answer your question, The Neuroscience Center in Deerfield, Illinois is currently the only place doing the Combination Therapy of TMS with Simultaneous IV Ketamine. Dr. Steven Best invented this technique and holds a patent on it. Their website is http://www.neuroscience.md.

  4. mary waters at 3:33 pm

    I am so happy that you are doing so much better..now that being said, I have this mess in my left leg and I am getting much worse. Tendons tearing all over my body.Having more trouble with my thinking and the stability of my entire body. My biggest issue is finding a Dr. who really knows something about CRPS at all. They often act like they do but they have no idea. My question for anyone is, does anyone know a Dr who treats with this Transcranial Magnetic Stimulation and IV Ketamine simultaneously. Or even the Ketamine in Baltimore MD. Please someone I need help. Thanks so much.

  5. Nicole at 6:25 am

    Ur story is almost just like mine. I weaned myself off OxyContin this yr. It took over six wks to go withdrawal symptoms. My whole body hurt. But it did distract me from my RSD pain. I am on no RSD meds. I sent away for cards that told Dr’s what the symptoms are. I was still working then as a Certified Pharmacy Tech in the hospital so I put a card in every Dr’s mailbox. I got a poster w/RSD info on it and gave it to my Doc & we hung it in his room at the clinic. I am all about educating everyone I can. It’s just another distraction from my pain. That’s how I cope 14yrs later. I watch TV, I am on Facebook & have 4 dogs ages 11yrs, 6yrs, 11 months & 6 months. The more I do at once the better because I don’t focus on my pain. That’s how I cope without RSD meds. Th ey all have unpleasnt side effects. When I first got it I got myself signed up for a clinical research program at NIH in Maryland. Unfortunately I didn’t fit the criteria & the Dr that was in charge wanted me but it wasn’t his upto him. They did send me home w/a walker, they made me a special boot w/sheepskin inside, a grabbing tool for getting things out of reach & a shower chair. Plus they flew me & my husband out made sure I had a wheelchair every airport and on the taxi ride there we saw the Capitol for the first time. I just read that the clinical trial ended this yr. I search for clinical trials all the time. I haven’t been to the dentist since my injury because I’m terrified. Two wks ago one of my molars broke so I got one of my RSD pamphlets & brought instructions on how to care for an RSD patient. She actually thanked me & it’s in chart now. I too am scared to get poked w/a needle, or iV. I won’t risk it. I am only going to do oral meds. Right now I am looking for a new Dr. Oh and did I mention I have horrible brain fog? It took me 2 hrs to complete this post. Distract distract. Oh & my silver lining with RSD? My handicapp license plate in Dec when Xmas shopping when it’s snowy, slippery, & cold w/ a wind chill of -30 degrees.

  6. Steven Mandel, MD at 10:58 pm

    Gracie,

    You said it all, “Your desire to get better was bigger than your fear of the unknown.” Good for you. You mastered your fear and reaped the benefit. Dr. Best inspired you to overcome your bias against ketamine. I am so glad for you. We see many pain patients in our clinic, Ketamine Clinics of Los Angeles, and many of them share your former fear of ketamine.

    Those who overcome their fears are able to benefit from this modern, effective, rapidly acting treatment. We often give the ketamine first because it works so rapidly. The patients are then able to pursue a course of TCS in relative comfort.

  7. Catherine Nichols Pogorzelski at 2:14 pm

    Exactly HOW are they “checkign the brain?” Are they giving MRIs with contrast? If so, THIS could be the cause and source of your pain as it is in me! HIgh amounts of Gadolinium SEVEN yes 7 years post last MRI !

    You are lucky you got a doc to lsiten to you about talking with other patients re: ketamine treatment, Dr Schwartzmann in Philly would make his patients signa non-discolsure agreement, I said ” Heck no!” to that one and no iplants to body as too invasive for me, I have done HBOT for IC etc and ti helps! I also have TENS unit it helps too ! CRPS down left side of body! http://gadoliniumtoxicity.com/2015/07/05/study-reports-increasing-signal-intensity-within-the-brains-of-patients-with-ms-after-multiple-injections-of-macrocyclic-gbca-gadovist/

    http://www.auntminnie.com/index.aspx?sec=sup&sub=mri&pag=dis&ItemID=111523
    FDA eyes risks of gadolinium contrast brain deposits
    By Wayne Forrest, AuntMinnie.com staff writer
    and all they are worried about is REVENUE!
    http://www.auntminnie.com/index.aspx?sec=sup&sub=mri&pag=dis&ItemID=111507