Tuesday, March 29, 2011

On with the Spinal Cord Stimulator and Off to the New POTS Doctor

After hours upon hours of wracking my brain, scouring the internet, watching YouTube videos, talking with family and friends, emailing with people who've undergone the surgery (both positive and negative encounters) and reading all of your comments (thank you for the many responses via email and posts), I have decided to go forward with the Spinal Cord Stimulator implantation. I feel like I am at my breaking point with my flank pain, and I am willing to face the risks for the possibility of relief.

I contacted Dr. Pain Relief to let him know, and we are moving on to the first step: getting the psychiatric evaluation. Before undergoing this surgery, all patients are required to pass a psych eval to determine that they are fully aware what the surgery entails, understand the required lifestyle changes, are willing to follow all of the maintenance plans (follow-up visits, charging of the battery, replacement of the battery after 10 or so years, etc.), and have a good understanding of the way the device relieves pain - that it won't get rid of pain, but hopefully mute the sensation some. However, most of the questions are about pain and how it affects life, to find out if a person's pain is really severe or not. Apparently, from talking with the psychiatrist's office, there are hours worth of tests they send that I have to bring in, completed, when I show up. Then, I do three hours of multiple choice and true-or-false tests, followed by an hour of testing by the doctor. In total, they said it is hundreds and hundreds of questions. A week later, the doctor dictates these and sends his final results and decision on to Dr. Pain Relief. Whoa! My evaluation is scheduled for about a month from now. It seems rather intense, so I hope I pass it. I would really be upset if, after all this, they told me I couldn't have the surgery.

One thing that really bothers me is this psychiatric evaluation. When I had my gall bladder removed, I wasn't asked any questions except "do you you want to have this surgery?" When I opted for sinus surgery because I couldn't breathe and was missing part of a right sinus, they asked me "do you want to have this surgery?" I wasn't in pain, I just couldn't breathe through my nose and it was affecting my ears, too, which was a problem being a flight attendant. They booked the OR the next day. When I was sixteen, it took me about 50 questions and a ten minute driving test to be legally allowed to drive a car on the road, which has a major impact on every single person I share the roads with. But, when it comes to finding something to help me get through my daily trials without the excruciating pain and tears, it is a months-long circus just to get approval. This is whether or not insurance is going to pay for the surgery. The doctor hands me drugs, seriously dangerous prescription narcotics, without blinking, but to get something that could help me and even possibly lessen the amount of painkillers I take, requires me to visit a psychiatrist to prove that I am really in pain by doing four hours of testing in-office, along with the hundreds of questions on the home tests. Unfortunately, if I want this surgery, this is the process I must undergo - and pass. According to things I've read, this is becoming common practice for all sorts of "elective" back surgeries.

Once the psychiatric evaluation has been passed, the next step is getting the insurance to approve the procedure and getting a general summary of the patient's costs/copays. From there, the trial stimulator procedure is set up. If that has positive results, roughly a week later the final surgery will take place.

I will keep you up to date with everything. I still remain sanguine about the stimulator providing some pain relief, and I hope these posts help anyone else considering this surgery, as well. I am also attempting to focus on the positive and not worry too much about the psych evaluation, because I know that the stress will only exacerbate the pain. It is certainly easier said than done, though I will give it my best. (Bird-watching out my window has become a new hobby of mine during the bad days!)


Also, I am headed to a new doctor tomorrow. After a full-on POTS attack and some POTS flares while in the office of my primary care physician (the one I adore), she was able to see exactly what I go through; we have decided the Florinef and Midodrine aren't enough to treat my POTS symptoms. They seem to be helping bring my blood pressure up some, but I am still having awful tachycardia. Most days, after doing anything out of bed, my heartrate seems to be holding around the 140s. It's very hard to do anything because of the flank pain these days, and when you add the tachycardia on to it, with the dizziness, weakness, lethargy and strained breathing, I am having a rough go of things right now. My doctor is sending me to an electrophysiologist tomorrow, which is a cardiologist that specializes in rhythm. I have seen one before, about 3 years ago, but he didn't help me with the symptoms; he is the one who sent me for the tilt table test. I am going in confidently and ready for a new cardiologist with new ideas. Fingers crossed!

I have spent the last week in terrible pain, with migraines to top it off, and sleepless nights that are just compounding the problems. I am going to get back to pain killers, heating pads, and rest now. Having my girlfriend's support, my mom by my side, and my furry baby in my lap has been a blessing, and I owe them all a giant "thank you". I sure hope each of you finds somebody (human or animal!) to help you cope. Hope you all have a wonderful week ahead! For those of you in pain this week, stay strong! We will make it through.

Extra: If you are interested in watching an implantation surgery of a Spinal Cord Stimulator see the video below. Fair warning, it is graphic. It may not be suitable for some viewers. :)



xo
dani

3 comments:

Bridget said...

Danielle:

I'm a 47 year old woman with EDS III and Chronic Fatigue Syndrome. I've been following your blog for a few months now, and I just wanted to say I'm pulling for you. You write well, and that tells me you're a highly thoughtful and intelligent person. I really have to commend you for putting into words what you're experiencing in a way anyone can understand. Despite the trials and pain you're enduring, you're strong in spirit. Hang in there!

Hyper Aspie said...

Hi there! I'm 23 and just beginning the diagnosis process. It was originally thought that I had Marfans but EDS seems to be a better fit!! I have almost all of your symptoms including the heart issues.
I've just gotten into the genetics clinic so hopefully a diagnosis will be found soon!
LOVE your blog!

vbc2000 said...

Thought you might like to see this article. Not sure if it's the same type of stimulator or not but it sure is interesting and must give alot of people hope. And as you know hope is so very important! I have enjoyed reading your blog and I hope you're doing well. I have POTS too and am going thru docs now.

http://www.everydayhealth.com/pain-management/0520/spinal-stimulation-helps-paralyzed-man-regain-movement.aspx?xid=aol_eh-news_3-&icid=main%7Chtmlws-main-n%7Cdl9%7Csec3_lnk3%7C213838