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. :)


Wednesday, March 23, 2011

Q and A: Neurostimulators

As you know from the last post, I am considering having a Spinal Cord Stimulator (SCS), aka neurostimulator, implanted in my back to help with my flank pain. After I researched the neurostimulator on my own, read the packet provided by my doctor about the device, trial period, and the surgery, and watched the video from St. Jude Medical, I was asked to come up with a list of questions to ask the rep. I am showing these in case any of you are considering this surgery. The answers to these specific questions were not clear in the reading material or on the site. Some of my concerns were addressed on the website, but these answers were given to me over the phone by my rep (summarized):

Is this permanent?
It's not permanent. It can be reversed – it can be taken out if it doesn’t work – if there are issues, infections, etc.

Does the battery ever run out or need changing? How do you I change them?
I would have a rechargeable battery – the rechargeable battery lasts the longest, is the smallest. The type of SCS I would have is called the Eon-Mini. The battery in it lasts 10 years or longer if used on the highest settings. It could last longer, just depends on how much I use it and how high of settings I use it at. To replace the battery after 10 years, they make an incision over the battery pack, take it out and replace it. It is a lot less invasive than the actual implantation surgery and heals a lot quicker. A 2”-3” incision is made over the battery pack to access it and replace it. The battery pack is inserted about 1/2"-3/4" below the skin. The battery replacement surgery takes about 20 mins.
The battery is charged wirelessly, at home, transcutaneously (through the skin). There is a "wand" that is placed over the battery pack for an hour or so, while sitting (watching TV, etc.); this is done every couple of days to once every couple months, depending on how much I use the SCS determines how often I need to recharge….can take like an hour or so….
I can check my battery's charge anywhere from once a day to once a week, it takes about 10 seconds.

Does it need maintenance other than charging the battery and replacing the battery after 10 years?

Can I shower or swim once everything is healed? Take baths? While healing?
Not while healing. Once healed there is no problem with any of these.

Can I use my cell phone while using the SCS?
There are no problems with cell phones that are known to date.

Can the ER use a defibrillator, a regular one?
Yes, generally, especially in the ER. If they need to use a lifesaving device they will. They will turn off the SCS first via a magnet in the ER and use the defibrillator.  

Would I need to wear a medical bracelet or carry something on me to let EMTs know I have a SCS?
I would have a medical ID card (like my EDS ID card from EDNF). No need for bracelet unless I want one.

What happens if the leads moves or how do I even know if they do? If they move do they have to go back in and re-place them? How do they do that?
The leads moving, called migration, doesn’t happen that often. If it does I will know because the sensation will be in a different location than it was when the device was placed. They can do a test to see. If need be, if the leads migrate, they can go back in and replace them or put them back in their location. There isn’t any way to know if something will move in a patient ahead of time. This would require an incision to reach the leads and re-situate them.

Would my battery pack be placed in my buttocks or stomach? Can I lay and sleep on your back with this in? I lay in bed often because of other issues in my body besides my back, would this be an issue?
Not an issue at all, I can lay on them as much as I want. If the device is turned on too high for comfort while laying on it, I can just turn it down.

How big of an incision do you have in your back when they do the actual surgery?
2"-3” incision where battery goes in (in the buttock area) and roughly 2" in the spine where the leads are placed.

Can I use an electric heating pad on my back afterward? Electric heating blankets, etc.? Can I use electric massagers?
Yes, may have to turn SCS off while using massager if uncomfy, but heating pads are fine.

Can I see chiropractors?
Yes, as long as they know where the leads are and be very gentle, no twisting of the body in rough ways. They must be very gentle for the first bit of time while leads are healing/settling inside of me.

Can the leads break inside of me? Has he ever seen the leads break in his patients or the battery pack leak?
Could happen, but he (the rep) hasn’t had anyone that it has happened to. This is just like all of the precautions; anything can break, but unlikely.

What’s the difference between SCS and occipital neuromodulation? 
Occipital neuromodulation devices are generally used for patients with severe migraines, though they’re not FDA approved for that. Can use a SCS and ON at the same time. It would require two separate devices with two separate battery packs, used simultaneously.

Can you hear the buzzing of the SCS while it is on?

Is St. Jude Medical affiliated with St. Jude’s Children's Hospital?
No. St. Jude’s Medical is the largest medical device distributor, but not in any way associated with the hospital network. 


Monday, March 21, 2011

I Need Your Opinion: Neurostimulator Implantation

Hi, everyone! It has been a few months since my last post. There has been a lot going on; there was a death in the family, a new relationship, lots of doctors appointments and lots of flank pain. In addition, there has been a lot in the news, and everything in my life's been overwhelming and has been causing lots of anxiety. Needless to say, I am hoping to again post more regularly now that things are a tiny bit more calm, and I have a giant list of things to post and hundreds and hundreds (literally) of emails to respond to (thank you for being such dedicated and wonderful readers!). Bear with me as I get caught up!

One of the things that has taken over my life, as you know from previous posts, is this horrendous flank pain I deal with. It is unrelenting, as an EDSer and friend who has horrific flank pain commented to me recently, and can really bring a person down to the bottom. There have been days I am curled up in bed in crocodile tears, clutching at my sheets, screaming and writhing in pain. I have all sorts of pain in my body, but nothing that comes close to this. Refer to the photo below for location. I have described it as:

"...terribly hot, writhing pain that never goes away, and is only slightly muted by the combo of pain meds, anti-spasmodic meds and a heating pad. The docs have no idea what is causing it and have just labeled it "nerve pain"."

The location of my flank pain, right side back

The location of my flank pain, right side

The location of my flank pain, right side front

Currently, Dr. Pain Relief, the new pain management physician I am seeing has me on a regimen of pain meds, fibromyalgia meds, muscle relaxers and Lidoderm patches. I am taking Oxycontin 15mg 2xday, Norco for breakthrough pain 10/325 up to 4xday, Savella (a newer fibromyalgia med) 50mg 2xday, Flexeril 10mg 2xday, and using Lidoderm patches daily for my back/flank pain. The new combo has me feeling a lot better with the pain in most of my body. I am not having as much pain in my hips which is fantastic, and I don't notice most of the "normal" pains in the forefront. If something subluxes, the pain is bad, but seems more manageable. However; the pain med combo is doing nothing to touch the flank pain. Nothing at all. The Lidoderm patches placed directly over the pain make it ever so slightly less annoying. Not a lot though.

Lidoderm patches on flank pain

This has left us searching blindly, as with most EDS symptoms, but now we're left without a lot of options. We've tried everything: TENS units (which I already own), higher doses of pain meds, injections, nerve blocks, etc. None of them help, or only help slightly for a few hours (like the nerve blocks, and I can't be injected with those every few hours!). My doctor thinks I should try a neurostimulator, also referred to as Spinal Cord Stimulators (SCS). At this point, I feel like trying anything, but I am terrified of having something implanted in me.

How a neurostimulator works:

An example of how it helped a patient:

I have read a ton of information and watched a bunch of videos on neurostimulation. SCS will not relieve pain, but hopefully minimize it to "take the edge off" or allow me to lower the amount of pain medicine I take. The doctor has told me it is very unlikely it will take the pain away, but if it works, it will make a significant difference in my daily flank pain. There is a required minimum of 50% pain relief for the insurance to cover the costs, though at this point I would gladly take a 10% improvement. (This surgery runs over $30,000 without insurance!) There are risks, as with any surgery, like death, paralysis, infection, etc. There are also contraindications; for example, I will never be able to have an MRI or MRA again. I will definitely document my process either way. One good thing about this, if I decide to move ahead, I get a trial run. The leads are implanted while the battery pack/generator remains on the outside for about a week to determine if this will help. If it does, they proceed; if not, I won't have the surgery.

For my readers who are familiar with SCS: 

  • Can you please provide me with your opinion/story of neurostimulation?
  • Have you or someone you know had the surgery? (I am hoping to find people with EDS or fibromyalgia, etc., to find how it helped/didn't help them.)
  • Did you receive relief? How much?
  • What was your recovery time?
  • Was the surgery worth it?
  • Would you recommend SCS?

Thanks so much for all of your time! I am very scared and having a hard time making a decision. I want relief more than anything. I have also watched lots of videos on YouTube that have shown patients who have had wonderful relief and who have had terrible experiences. I am very lost. Any help you are able to provide would be greatly appreciated!

I hope you are all well and enjoying a low-pain week! My love goes out to all of you!