Question about SCS and Service Dogs
 

Does anybody here have both an SCS and a service dog to help with their RSD/CRPS? I'm still new to this group and so grateful for finding one since being diagnosed with this awful condition. It's such a lonely feeling disease. I have it in my right foot and my entire life has changed. I'm 30 but now I feel ancient and depressed all the time. I went from running marathons to barely being able to get out of bed. My life is nothing but surgeries and drs appointments. I'm about to get a permanent SCS implanted but was curious about a Service animal since my balance and movement is limited. I'm trying to find a positive light with this disease and nothing to me is more positive than having a positive force like a dog to help me adjust to this life change. If I can even help in the training that would be great too. Any thoughts?

Having a service dog sounds just wonderful. Heck just having a fuzzy companion of any sort is wonderful. If this is something you can pursue why not? I think the benefits to mental and physical health are immeasurable.

My husband just asked me today if I got bummed sitting in my La-z-boy, if I had too strong an association with it from my surgeries. I was pretty much living in it for a while. But I told him no, and the reason is because of my cat. She pretty much lived in it with me, all snuggled up by my side with her head under my chin. She certainly isn't trained but she gave so much love that she neutralized any pain association with my chair. To this day she can tell when I have more pain and is very attentive. I don't know what I'd do without her! :circlelove:

Great question! I've thought about it;I also have PTSD and would love to have a dog go with me to my medical appointments....:cool: but I just don't have the room or the ability to care for a pet right now....but great question....:grouphug:

I have 3 cats. They sleep on my thighs and feet, which really helps my leg pain. You wouldn't think it would, but there's showing about the warmth and purring. ;)

I don't have an SCS or a service dog but just wanted to chime in and say I hope the surgery goes well.

The SCS implant is not something they offer commonly here in the UK. Or even if they do it is VERY rare. My PM Doc did mention one when my RSD worsened however he advised me not to have it as I have really bad reactions from nerve blocks (one caused me to not walk for a year as I lost all coordination, another caused severe myoclonic spasms) and he feared that surgery would make things worse. I know they work for many people so wish you the best of luck.

In terms of service dog, I think they are a really good idea. I have a springer spaniel and although he isn't a service dog, he really helped me. when my rsd spread to my arm, my hand went into a fist and I was unable to move it at all. Stroking my dog (Jack) really helped and eventually, I could move my hand again. Its nice on dark days too when you are getting into a depression, seeing their face and knowing they rely on you really helps cheer you up.

I know how hard it is having RSD at a young age. I've had this monster since I was 12 years old and am now 20. Its really tough. Some days I don't know how I will cope probably for the rest of my life, especially when getting out of bed is hard. But its made me stronger and I just want to say never give up hope.

We're all here for you. Take care and wishing you the best of luck:hug:

Ali
Just to correct something you said, SCS implantation is, and always has been, available in the UK for CRPS. In fact if you check the relevant NICE Guidelines, you will see that it is actually the one and only NICE approved treatment for CRPS in the England and Wales (NICE doesn't apply in Scotland). There are many centres and hospitals in the UK which implant SCS devices on the NHS. The NHS is becoming increasingly keen on giving SCS devices to CRPS and other chronic pain patients as the devices supposedly improve and are seen to be more therapeutically and cost effective. I appreciate that you may not be a candidate for SCS but, interestingly, as the devices have altered over even just the last 8 years, the pattern of patients who are considered to potentially eligible has altered quite significantly.

Implanted pain pumps are not available to CRPS patients in the UK. In the UK, they are typically only considered for terminally ill patients. Baclofen pumps may be available for patients with severe refractive fixed dystonia (or other medical conditions) but would not be available otherwise. Ketamine infusions (such as are given relatively routinely now in mainland Europe and the USA) are not available in the UK. Lidocaine infusions are available in the UK but there is no clinical evidence at all for any lasting benefit from these infusions so they have to be repeated regularly.

I just don't want anyone else in the UK to have the wrong information about SCS availability.

Maybe it is different in my area. I know for ME and MANY other RSD patients in the surrounding areas, NO doctor will do an SCS. I didn't say it WASN'T an option, I know some are willing to implant them and I clearly stated above that it was recommended for me when my RSD worsened. I have a friend in the UK in Leeds with RSD who had an SCS implant. It usually is VERY difficult to find a doctor to do one though, well it is in my area. Its not something they talk about routinely as treatment option, like it seems in the US.

In terms of the pain pump, I was offered one when my RSD worsened so like the SCS, they definitely are available. PM Doc wanted me to have a trial of Baclofen and / or Ketamine to see if it helped and I even had a MRI scan on the back / head to check if there was any other problems before going ahead. It was decided though that because of my Sheurmanns and the problems with the other nerve blocks, that it wasn't wise.

Probably different with local governments but the government I am under (Rotherham) will only provide SCS as a VERY last resort on the NHS.

Neurochic,

SCS's are rarely, if ever considered an option in my Trust, either - and I know many, many Chronic Pain patients with the whole range of conditions after being in the Clinic for too long.

As for Lidocaine Infusions, I can testify that - while I have to have to repeat the treatment every 4 weeks - it accounts for 50% of my Pain Management. What is the problem with having to repeat anyway? I have to take my other meds 4 times a day. And the Lidocaine has far fewer side effects.

Dave.

I do not have a Service Dog, but I do have a therapy dog in training.

The wait for service dogs in my area is years. So I didn't feel that was a good choice for me right now.

I've suffered severe depression since my CPRS diagnosis. I have gone from working full time in a very active job to mostly just sitting on the couch (except to go to doctor's appointments) due to the pain. When I started looking into service dogs and was getting discouraged with the wait my husband suggested that maybe I needed a hobby (since I can't do any of my previous hobbies). We eventually came up with the idea of training a therapy dog. With the help of my family, I should be able to manage to take her to classes (one time a week for one hour and only 10 minutes from home). If she gets certified as a therapy dog I will be able to take her into local hospital, schools, nursing homes, etc. I will be able to book visits around my schedule and when I feel up to it.

After a nine month search, Auggie (a mini Australian Shepherd) joined our family 10 days ago. She has been a blessing. I've been able to get out of my house every day to take her for a short walk, plus attending to her other needs. I haven't been that active in 2 years, and my pain hasn't increased with the activity. Just having her to snuggle with has lifted my spirits.

Best wishes with your search for a service dog. I'm sure someone on here will pop in with their experience.