Today is two months since I had my Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS) for my Treatment Resistant Depression (TRD). I had hoped that I would have felt something improve by this point in time, but I haven't noticed any improvement. In fact, over the past couple of weeks, I would say that my depression has actually gotten worse.
As I keep saying, the doctors do not expect me to notice any improvement in my condition for at least three months to a year after having the surgery. Therefore, it is perhaps not surprising that I haven't noticed any change yet. However, my mood over the past couple of weeks has gotten worse, as I have noticed an increase in my lethargy and lack of motivation, as well as in my feelings of hopelessness, worthlessness and loneliness. I find it increasingly difficult to get through each day.
My wife, however, sees this as something positive. When we met with Dr. Levitt, the psychiatrist for the research project in which I am taking part, he said that often people get worse before they get better when they have this surgery. Thus, it is possible that what I am experiencing now is a prelude to me getting better at some point. On the other hand, it may just be that I am getting worse and that the surgery has had no effect. There is no way to tell and that is the hard part.
Another point that Dr. Levitt made was that the results of the surgery may be subtle. I may not get better from the surgery itself, but the surgery may make medications that haven't worked in the past start to work for me. Thus, at some point, if I don't get any better, I will have to start retrying all of the medications that I have tried before to see if something works now. That could take a long time.
I am scheduled in for my three month follow-up appointment on February 12. At that time I will meet with Dr. Levitt as well as the study neurosurgeon and I will have psychiatric scales done again to see if I am improving or not. Finally I will have an MRI to see what is happening with the lesions that they created during the surgery.
So, that's where I am after two months. I'm getting worse and not seeing any improvement. That may be a sign that I will get better, or it may not. I still have a long road ahead of me.
Hi Rob, I've just discovered your blog and have been reading with interest all your posts. Firstly I'd like to say how incredibly courageous you are, not only going through this experimental treatment, but taking the trouble to document it for the rest of us. I too suffer from severe depression and I know how difficult it can be to commit to anything, simply because you don't know if you will be able to complete the task which you set for for yourself. I am also a very guarded or "shy" person who does not like attention, so I appreciate your efforts, as I don't think I could be so open.
ReplyDeleteThe reason I found your blog was because I was searching for anything to do with MRgFUS to see if there had been any progress with this treatment. I have been holding on to the hope that it might be that "miracle cure" that finally would allow me to be "me" again. I just feel that there is some "circuit of doom" in my brain that needs to be broken for me to be free. I'm sure you probably have a similar feeling.Some day I feel better than others, but it is pretty much always present and although I still have a job, I don't know just how long I will be able to keep it.
Like you I have tried many medications and treatments, and while I have improved on some, the underlying problem never really goes away.
It is very disappointing of course to hear that you have not felt any improvement from the surgery as yet and I hope that you will see a change for the better very soon. Please don't lose hope, It may simply take longer to have effect, or maybe the size of the lesions needs to be increased some.
The fact that you have felt no change at all seems suspect to me. Have you considered that they might be doing a double blind study and you may be in the control group with only a placebo treatment?
Anyway, I hope you see some improvement soon. Depression sure is a horrible experience and you clearly deserve to be free of it after all the hard work you have done to find a solution.
Best wishes,
Andrew,
Belfast,
Northern Ireland.
Andrew,
DeleteThank you for the kind comments. I hope that you will be able to find something to help you with your depression as well. It's a difficult road to travel, as I am sure you know, but we have to keep looking for the solution that will cure us. Hopefully you will be able to try MRgFUS sometime soon too.
Regarding the possibility of the study being double blind and I received a placebo, that isn't the case. The consent that I signed made very clear that the study wasn't double blind and that everyone would be receiving the treatment. Therefore, I just have to wait and see if I am in the 50-60% of people for which this will work.
Thanks,
Robert.
Rob,
ReplyDeleteThanks for acknowledging my comment so soon. I'm sorry you have to endure such a frustrating wait for relief of your depression.You really have tried so many treatments, more than myself by some margin.
I am curious, you said that you had tried Ketamine, did it offer no relief at all, or was there an improvement that was just too short lived to be helpful? I was hoping that the newly developed derivative, Esketamine, would be licenced for use here soon. Not really a cure, but maybe something that could be helpful for when I'm having a bad day.
Cheers,
Andrew.
Yes, I tried Ketamine, but it did not offer me any relief. In fact it made my depression somewhat worse while I was taking it. It works for many people, so it might be worth trying Ketamine even if you don't have access to Esketamine.
DeleteThanks for that. I might look into it, but i think it would involve a flight to England, and I don't know if I can face that every two weeks or so. There is a clinical trial of Esketamine going on now for BMA approval as a treatment for depression, but I was reading today it won't be finished until 2022, so that's not much good to me now. Earlier this year I was going to try psilocybin but customs confiscated my order of mushroom spores from Amsterdam:( Sounds crazy, but i'm getting desperate.
DeleteRegarding having to take a flight to England every couple of weeks if you are taking Ketamine, is that for Ketamine infusions? You don't have to do it with infusions. I'm not sure what the legal status of Ketamine is in the UK, but here in Toronto there isn't anywhere to get Ketamine infusions either and my psychiatrist was able to write me a prescription for Ketamine in capsule form that I would take at home. You might want to look into if that is an option for you. My psychiatrist says that it is just as effective as an infusion and a lot easier.
DeleteOh, I thought infusions were the only way really, because it is a controlled substance and there is some risk of bladder damage. Thanks, I will look into it. I'm currently doing the cognitive behavioral therapy but it hasn't been much help at all, so I need to start thinking of what i'm going to do next.
DeleteAbout the MRgFUS. Do they do any sort of functional assessment of brain activity using fMRI beforehand to determine a target? Also it seems they only do anterior capsulotomy and not cingulotomy or leucotomy. Did they say why this is?
cheers,
Andrew.
For me they didn't do any functional assessment of brain activity using anything like an fMRI or anything else. I guess that they just knew what area they wanted to target in this study and didn't need anything else. Regarding why they did an anterior capsulotomy and not something else, I don't know. They never said. It was part of the release that I signed that this study would perform an anterior capsulotomy. I guess that they figured that was the most likely surgery to be effective. I might ask them at my next appointment in February.
DeleteHi Rob,
ReplyDeleteIt is disappointing that you didn't had any improvement in your depression. How are you doing now? I'm following your exact path in the same province at the same instituions for the same problem. I did every treatment like you without releif. I have been suffering severely from depression and anxiety for more than 4 yrs now and I can't do it anymore. I was torn between DBS or FUS. The DBS team decided that FUS would be the best choice for me. I will start the baseline visits in the following week at Sunnybrook. Let me know how your doing. Best wishes.
I'm so sorry that you have been suffering for years with anxiety and depression, as I have. It is truly horrible. It's good that you are going to be undergoing FUS. I hope that it works for you. However, you have to keep in mind that it can take a long time to work. It has been 10 months for me now and I haven't gotten any better. I am still suffering. My anxiety has gotten somewhat better, but my depression is still just as bad as ever. As I wrote in my last blog post, if nothing improves by November they will consider me for DBS. I am hopeful that something happens by then, or I have DBS and that helps me. Hopefully it will work for you.
DeleteThis may sound as a weird question. I took accutane for severe acne when I was younger and sometime thinks that maybe the cause of my depression and anxiety. Researche as been mixed wether it causes it or not. I wasn't depressed on it and even after. Have you ever took accutane?
ReplyDeleteI haven't taken accutane.
DeleteI forgot, other than the patient on the sunnybrook website, are you aware of other patients that had success with FUS?
ReplyDeleteThe only person that I know of having success with FUS is the first person who had the operation at Sunnybrook. I mentioned her in my May 16th blog posting. She has been cured 11 months after having the surgery. I don't know about the results of anyone else.
ReplyDelete