Dr. M entered the room. I’d never met her before and was a bit surprised Dr. North wasn’t coming in first thing, but I took it in stride. She works with Dr. North doing ketamine infusions and she had read through most of what had been sent from other doctors beforehand (that impressed med), and she said her concern was that even with the low dose ketamine I am limited in how often I can use it because of its side effects – both dysphoria and increased visceral hypersensitvity (enhanced perception, or enhanced responsiveness within the gut or other abdominal organs including bladder, uterus, etc — even to normal events…VERY PAINFUL in my case). She said it wasn’t that common to have folks who have such overlapping and severe functional gastrointestinal (GI) issues, and that since ketamine does sympathetically slow down motility, this would be a “glaring concern” in her opinion. She told me the ketamine infusion would be a full week, and of course being stuck in bed for a week (as with using a wheelchair) only makes functional constipation and gastroparesis (paralysis of the GI tract) worse. If we were going to do the infusion, we’d have to really get a GI plan in place beforehand.
She wanted to know what other treatments I’d had already for CRPS/RSD. Nerve blocks had not been incredibly effective, lasting only a few hours before the relief ceased and I was in a flare. I told her my pain management doctor, the illustrious Dr. Z, had a gut feeling that radiofrequency nerve ablations may be less than helpful as well as being fairly risky in my case. Dr. M confirmed her suspicions. Medications have helped with the burning pain to some degree and some of the stabbing, but not with other symptoms, and have made my GI symptoms much more difficult to manage (since most medications slow gastric emptying and motility). Medications have been a definite trade-off which I’m not sure can continue without increasing my misery or working very hard to get these medications balanced with fewer negative side effects…which may take months to years of experimenting and lots of patience on my part, possibly even lots of increased sickness due to adverse drug reactions given my history.
She asked where it started – in which leg – and said that they focus their treatments on the part of the body where the RSD started, not necessarily where it is most severe. I thought that was interesting…not what I would have expected anyways. I told her that I had been in a rough car accident in November of 2007 and since my CRPS diagnosis it finally made sense why I experienced sensory changes from the level of my SI joints (low back) and down from there afterwards. My health really took a nosedive after the accident and even my visceral hypersensitivity increased at that time. Low back pain became chronic and constant for several years after my car accident. It was not until December of 2011 that I found out, through adhering to The Specific Carbohydrate Diet to help improve my SIBO and other GI disorders, that I realized some if not most of my back pain was being referred (originated) from my intestines into my back. Yet I think the hypersensitivity may have been, at least in part, a result of trauma which caused CRPS to advance even mildly into my abdominal viscera.
We talked more about narcotic and opoid medications. I told her I’d been on narcotics in high school but had so many bad reactions to them, and now with the GI problems being so severe, I just cannot go near them. She said the biggest problem with the ketamine infusions is that they have to have patients detox and go through withdrawal on the pain meds prior to doing the ketamine infusions, and that was a really rough process.
She asked me if I thought that if we ran the ketamine infusion anticipating constipation, whether I’d have enough tools at home that I use on a day-to-day basis to keep my GI tract moving. I told her I felt that we NEEDED to have my GI on board with a plan, to have that relationship between doctors established before we even got started. Dr. M wanted to have something in writing to show what works for me, to keep things moving along. The problem with that is…I’ve exhausted essentially all options for medications, methods, and general medical knowledge that can help me from a GI perspective. The plan is what I’m doing NOW, every day, and it’s still far from perfect. I told her I do a colonoscopy prep cleanout every two to three weeks normally to help control the Small Intestine Bacterial Overgrowth. I also take enough laxatives (Magnesium Citrate, Amitiza, Colace) in a day to keep most people going for a week, plus I adhere perfectly to my specialized diet and I will NOT break my diet during the ketamine infusion no matter how hard it is to maintain (I’d rather not eat than eat something that will make me sicker). She said there were people on feeding tubes who they had accommodated so she was confident we could work that out. During the infusion I wouldn’t be eating much anyhow because I wouldn’t feel well. I knew one whole week without eating enough would make me very weak and it would take a long time for me to get my strength back, so I asked about feeding through a PICC line. She said it may be an option, but all of that would have to go through my GI first.
Unfortunately, they haven’t seen much benefit from lower dose booster ketamine infusions in the office, so they tend to focus on the 7-day inpatient hospital infusions instead.
But at this point we were still discussing the ketamine infusion as a possibility. Yes, there were significant concerns, but I had the sense that these concerns could be managed with significant planning beforehand. Dr. M said she wanted to get Dr. North into my room to discuss these things with me and add another brain to the mix. I naturally had my list of questions for which I needed answers as well.
Dr. North burst in with a quick handshake and asked how the CRPS/RSD started. I gave him the rundown and he reiterated that they focus on the area where it started first. I didn’t ask why. I told him not to touch my legs or he might get hurt (it was a high pain day and on top of everything else, I had a migraine!), and he said he’d need to see them so I had to take my compression stockings off. Because the temperature was almost perfect in his office and I’d been wearing my compression stockings all day, my legs looked fairly normal, but I explained how they turn various colors. He asked if I had any pictures of the color changes and I had earlier turned my tablet PC on and loaded pictures for doctors to see in case they asked – I sure was prepared! While I was explaining my history to him after he asked, he wanted to know how hypersensitive I was. Thank God he didn’t try to touch my legs! But he was moving while he talked and finally I felt annoyed and said, “Please don’t move the air!” in the middle of a sentence. He asked if I had hypersensitivity above the waist and I told him that I have fibromyalgia. Whether or not that really counts as hypersensitivity is questionable in my book. After a few minutes of my compression stockings being off, my left leg was turning quite red and my right leg was experiencing the color changes too. “Yep, that looks like the real deal” he said, meaning CRPS.
He also asked for more details about the reactions I’d had to pain medications and I told him at this point about the hallucinations that seem to happen both as a reaction to some medications (Wellbutrin was the worst) and when my GI tract slows down and doesn’t function. Of course, we’re trying to rule out narcolepsy and/or dysautonomia as causes of the mental health problems, though we know there is a direct correlation between medications and my mental health status. He reviewed my current meds. He wanted to know how long I’ve been using the low dose intranasal ketamine and I explained that I haven’t used it much lately because of how it ramps up my visceral hypersensitivity, so the idea was that we want to try me on Amitriptyline (an old antidepressant which works better for decreasing visceral hypersensitivity than it ever did for treating depression, ironically) before trying to increase my use of the ketamine, hoping to make the ketamine more tolerable. We’re also trying to figure out what is causing a return of the hallucinations I’ve had in the last few months since starting these medications for the pain, and we didn’t want to add more variables to the “experiment”. Personally, I REALLY LIKE BEING SANE. He asked who my GI doctor was.
Then came the kicker. He said, “Well, I don’t think ketamine is a good idea for you from an IV standpoint. It’s going to mess all your bowels up. And there is nothing I’ll be able to do to prevent that.” So I asked him if I did a colonoscopy cleanout before the infusion if that would help. “No, the infusion itself will make you cramp SO BAD (in your intestines). People with severe visceral issues don’t tolerate ketamine infusions well. You might be able to do the low dose ketamine intranasal but with the doses of ketamine I’d have to get you to on an IV, you wouldn’t do well.”
I was so bummed out at this point, still in my mind trying to problem-solve how we could make the ketamine work. I had my hopes kind of set up on this treatment, as I’d heard so many patients say it had been effective for them. This was most definitely NOT what I wanted to hear. No, not one bit.
Dr. North moved on, however, and asked if my doctors had tried a spinal cord stimulator (SCS) on me yet. “Oh,” I said, disappointed that he was moving in that direction, “I haven’t wanted to try that route”. He said that was fine and then asked if anyone had tried Low Dose Naltrexone (LDN). No, I haven’t tried it but I’ve read a little bit about it though I had not found much that was especially credible. “No, you won’t find much about it but you’re getting to the point where you’re beyond accepted data.” I said, “Well, it didn’t take long to get to that point now did it!” He said I might consider an SCS trial which doesn’t involve the implantation of the stimulator device; it’s all external except for the electrode leads which are inserted through an epidural-like procedure. It would help me know, almost immediately, whether the stimulator would work for me.
I told him that I was concerned about getting a permanent implant because of the surgery involved and the risk of spreading CRPS to the surgery site. He told me that as long as the stimulator was implanted through a SINGLE incision rather than multiple incisions, the risk of spread seemed to be significantly reduced. If the incision is made right dead in the center of my spine, he wouldn’t be cutting any nerves (as nerve injury is what they believe precipitates the spread). The folks who do poorly with stimulators tend to be those whose doctors make two separate incisions – one to anchor down the leads, and another for the stimulator itself, as they often cut the cluneal nerve. Dr. North makes just the one incision but then uses only blunt dissection with his finger to move the stimulator into place. He said he had not had anyone develop the neuropathic pain by using this method of implantation. I said I was concerned because I’d heard of patients saying their batteries (which are also internal) get hot and painful. He said it would feel warm or hot while I charged the device but that it’s the folks who have multiple incisions whose stimulators feel so hot due to the allodynia and he’s had to remove SCS’s from folks who said the stimulator helped their legs, for instance, yet they could not tolerate the HOT spot on their back from the battery.
I’ve been reading online about CRPS patients who have these stimulators and who have had tons of problems and multiple surgeries to fix the stimulators (since it’s inside your body, doctors have to keep going back in to fix stuff when it breaks…no fun!). He explained to me that if I look into it more carefully, it’s likely that these patients have stimulators which are NOT the Boston Scientific model but other brands. He broke this down for me.
Medtronic stimulators – use old technology from the late 1970’s to 1980’s and haven’t updated their SCS product since. It’s not very effective. The folks with these devices tend to find that they get relief for the first six months or so, then it doesn’t work…or they don’t like the sensation the SCS gives them.
St. Jude – these stimulators use better technology, but they tend to break and their generators (what I’m calling the “stimulator”) go haywire, and they have a lot of issues. From what I remember from my reading, many folks have these stimulators.
Both the Medtronic and St. Jude stimulators are developed from the technology that produced pacemakers, which are surprisingly simple devices but not meant to meet the needs of treating neuropathic pain, which is very complex.
Boston Scientific – uses new technology developed from cochlear implants (which are very technologically complex devices), and this is the only stimulator brand that Dr. North uses for the above reasons.
He said the Boston Scientific stimulator, called the Spectra, could have four leads attached instead of two, and that during the trial if I wanted he could attach two to my legs and two more to the T6 vertebral area which controls my visceral sensations, attempting to decrease my hypersensitivity. I mentioned that I’d heard of gastric pacemakers and wondered if this was related. He said it may help with my motility and gastroparesis though it’s not the exact application since gastric pacemakers are applied directly to the stomach, and that is not his field though there is growing research in that area.
I was grateful for the information on the SCS, but still wanted to see if there was any possible way I could do the ketamine infusion. I told him I was a TOUGH COOKIE and wanted to know if he thought I could just tough it out for a week, and he said he didn’t think so. Folks with a lot of GI issues just don’t handle it well, and “you have A LOT of GI issues”. Well, that’s true enough. I asked for more information on the SCS and he said I didn’t have to make a decision right away, that I could call if I was interested.
I also asked about how or if we could start the Low Dose Naltrexone (LDN) and what form(s) it came in. He said that was fairly easy and he would talk to Dr. Z about it. The pills are made by a compounding pharmacy so that they can get the dosage right. He suggested that I could start the LDN first before moving forward with the SCS to see how well it works for me.
I asked, “What if I decide I’m scared off by the spinal cord stimulator? Is there anything else left for me?” “The LDN is the emerging area of research now. You’re already on Lamictal, so they’re getting pretty far down on the list of nerve pain medications. You’re still on a low dose.”
He had tried to leave the room a few times, but I kept rapid-firing my questions. I’d say producing these questions was pretty good for a gal with a migraine and level 7 pain during that time plus no original plans to discuss SCS or LDN (my original list of questions was only about the ketamine infusion), and no time after him mentioning SCS for me to write down my concerns before having to ask on the spot. God must have been guiding my brain! Finally, I was out of immediate machine gun questions by the time he stopped asking “Ok?” as in “Are we done?”. I looked at him and sighed with disappointment. “Alright,” he said with a half-chuckle, perhaps relieved that I was out of questions and/or surprised that I had no more. He and I had covered a lot of territory in just 16 minutes.
Dr. M was going to come back into my room, so this was my opportunity that I didn’t get before to scribble down any additional thoughts or concerns regarding the SCS and LDN. I wasn’t real concerned about LDN, and Dr. M confirmed it’s reasonably safe especially when compared with ketamine. I first came across LDN treatment while I was researching about my GI diseases and I’ve heard that it can be helpful for people with Crohn’s, IBS, you name it in the GI department. I’d just made it a point not to spend much more money on my GI tract as buying the medications I take plus my diet is already breaking my SSDI-restrained budget. I do, however, have some money left from my tax return that I’ve dog-eared for medical expenses. Actually, my entire tax return is going to medical expenses this year, but I don’t feel bad about it – I do what I need to do. While some use their tax refunds for vacations, I figure a “vacation” from pain – even a gambling shot at it – will be well worth the monetary expense. Health is worth more than money; it’s hard to enjoy even monetary wealth when you’re too sick to go anywhere but doctors’ appointments and the gym. Not that I’ll need to worry about monetary wealth anytime soon. I’m just grateful my basic needs and some of my medical needs are taken care of through SSDI, my part-time job, and the generosity of others!
Dr. M came in with a DVD produced by Boston Scientific about the stimulator and told me there was a meeting on July 25th for folks considering getting a stimulator to meet with patients who already have stimulators and a representative from the company. It’s about a two-hour session with time included for Q&A. I’d like to go, but I should probably arrange someone to go with me since it would involve driving home at night. I’d also need to take the day off of work (I work in the evenings). But I’d really like to go and meet others who have these devices.
I’m so leery of drug reps and big pharma companies selling their wares and the kickbacks doctors get from buying into the same. Dr. M said Boston Sci has the least amount of sales pitch compared with the other two companies and in the groups like the one I’m invited to attend on July 25th, the company works very hard to make sure they have non-biased patients. She said that they as doctors do not get kickbacks and that made me feel a bit better.
I wanted to know how many SCS they had done and what patient experiences had been overall. She said Dr. North had done about 60-90 and she’d done 30 within the last year. These SCS’s have become much more popular in the last year (maybe that means more insurances are now covering them) and the technology has made incredible leaps and bounds within this past year. She said many patients have had remarkable success. She just saw a girl a week ago who looks fantastic, she’s gotten her life back, it’s life-altering. She has seen near complete relief so that while it’s not complete, these patients are able to function much more independently, to tolerate physical therapy, people touching and moving. “I get anxious with just people moving around me,” I said. “I understand, that’s fine; that’s normal for this (condition).”
I never like being a guinnea pig, though desperation has made me willing to accept guinnea pig status in the past. New technology may have the advantage of producing better symptom relief, but it’s not always as durable as simpler models nor can it be as time-tested. Besides, just like getting a new computer and finding that 2 months later it’s now “old technology,” the same happens with implantable devices. I mean, once you get it in there, you’re kinda stuck with it and not going to get a new one anytime within the near future (batteries are supposed to last about five years I believe). So I wanted to know if that meant I should wait for the “even better” to hit the market or if we should consider doing this sooner rather than later, to catch it before the disease progresses any further. The general name of the game in treating CRPS more effectively is catching it sooner, but I’ve had it for 10 years (it just happens to have progressed significantly and quickly in the past year). She said this general rule still held true and she’s seen some folks who have had CRPS for 10+ years do well with the SCS in terms of relief. I was a bit encouraged by that.
She left the ball in my court as to pursuing the SCS, telling me that if I want to take that route I can call them back when I’m ready. I appreciate that they aren’t trying to push me at all. I think I’d be super-duper hesitant if I felt like they were pressuring me and it would probably turn me off to SCS permanently. I need to do my homework like I always do. I need some time to process this, to consider it a viable option and assess how it may change my life either positively or negatively.
Finally, since I’m not one to give up so easily (smile), I wanted to know her view specifically on the ketamine infusion, especially since she had at first seemed rather positive about the possibility of IV ketmine even though she did have a “glaring concern” about my GI function and said it was a “red flag”. I explained that I had no intention of creating a conflict of interest (between her and Dr. North), but that I’d appreciate it if she was really honest with me in providing her own opinion on the suitability of ketamine in my case. She said she agreed with Dr. North not only because of my visceral hypersensitivity when taking the low dose ketamine but also because of the dysphoria (feeling disonnected with the world around me) I experience at such a low dose. I told her simply that when I took the ketamine, I felt like I was in Alice in Wonderland combined with Honey I Shrunk the Kids, and she said at such a low dose that a very good indication that I’d have a terribly difficult time on higher doses. What do I think she meant? Losing my sanity during the treatment. “I have seen a few – not many – patients whose dysphoria was so bad that the whole thing wasn’t worthwhile, and I’m afraid you might be in that category. I have a feeling that may be the case here.”
I told her I was afraid of finding myself at the end of the road for possible treatments and wanted to know if she could think of any other rabbits in her hat that I didn’t know about. Nope. But they are a research facility, so every few months something new may come along and I shouldn’t feel like I’m at the end of the road. Easy for someone else to say. 🙂
So that was that and I was really bummed that the ketamine isn’t going to be an option. I’m not sure what to think of the SCS yet. I need to pray that if it’s the right way to go, God will give me peace about it. Of course there is a one to two week trial first so I’d probably get a better feel for what to do after that, and there is no commitment to the device even after the trial. I don’t have to rush into any decisions here, though as she said it’s better to do what we can sooner rather than later. In the meantime, I’ll ask my questions online to other patients, read my medical journals on PubMed, and learn as much as I can and as is reasonable while trying to continue on with living.