Sufferring in Orange County, CA

[nospam]

I have tapered down to 2.5 mg of Percocet 3/day and hope to be off of it soon (I had withdrawl symptoms last time I titrated off too quickly). I am still dependent on Valium to keep my SCM tension and occipital headaches under control.

I'm confident that the majority of my remaining post-surgical pain is rotator cuff: AC joint bursitis & supraspinatus tendinitis (icing and ultrasound/TENS combo have helped greatly). I hope to get AC joint cortisone injections for the bursitis/tendinitis next week. I am scheduled for Botox in two weeks: occipital headache protocol plus SCM dystonia protocol (not EMG-guided).





If the Botox doesn't work, I may be looking at being on Valium indefinitely.

[parbie]

Oh wow I have missed so much going on with the forum and your thread Marc! I had no idea you went back for surgery. I hope you are doing well and this works this time around I really really do, you have always been an inspiration to me.

I am about to update my own thread, it looks like more surgery is in the near future for me as well, and there is a good chance I will be coming to your area as I want to meet with Dr. Angle.

I hope you don't have to be on Valium indefinitely, that is what I've been told too since my first surgery and when I tried to get off that and Norco I had insane withdrawal symptoms.

Also, Are you sure your other symptoms are AC joint bursitis? My newest physiatrist believed I have the same issue and gave me 4 cortisone injections on each shoulder and they made all of my symptoms much worse...please tread carefully! What made you decide to go with Botox for the occipital neuralgia?

Originally Posted by nospam

I have tapered down to 2.5 mg of Percocet 3/day and hope to be off of it soon (I had withdrawl symptoms last time I titrated off too quickly). I am still dependent on Valium to keep my SCM tension and occipital headaches under control.

I'm confident that the majority of my remaining post-surgical pain is rotator cuff: AC joint bursitis & supraspinatus tendinitis (icing and ultrasound/TENS combo have helped greatly). I hope to get AC joint cortisone injections for the bursitis/tendinitis next week. I am scheduled for Botox in two weeks: occipital headache protocol plus SCM dystonia protocol (not EMG-guided).





If the Botox doesn't work, I may be looking at being on Valium indefinitely.

[nospam]

Originally Posted by parbie

Also, Are you sure your other symptoms are AC joint bursitis? My newest physiatrist believed I have the same issue and gave me 4 cortisone injections on each shoulder and they made all of my symptoms much worse...please tread carefully! What made you decide to go with Botox for the occipital neuralgia?

I'm sure it is bursitis and tendinitis as I have had the same symptoms several times before, relieved by ice and resolved by cortisone. 4 cortisone injections sounds like overkill to me. I believe the most I've ever had is 2 per side: 1 in the AC joint and one in the supraspinatus/upper trap. Most of the time I've just had the one in the AC joint.

Botox seems to be the only option left to treat these SCM spasms. I've seen several Neurologists and a Physiatrist. I even saw a neuro that specializes in movement disorders and EMG-guided botox and he didn't accept me as a patient, said I need Botox but not EMG guided (that my problem was myofacial and not spasmodic torticollis/cervical dystonia).

Some have hypothesized that I've developed a fibromyalgia type of hypersensitivity in the neck due to all that I have been through. Dr. Angle is going to check around to see if there is someone in his network that may be able to help me.

[parbie]

Originally Posted by nospam

I'm sure it is bursitis and tendinitis as I have had the same symptoms several times before, relieved by ice and resolved by cortisone. 4 cortisone injections sounds like overkill to me. I believe the most I've ever had is 2 per side: 1 in the AC joint and one in the supraspinatus/upper trap. Most of the time I've just had the one in the AC joint.

Botox seems to be the only option left to treat these SCM spasms. I've seen several Neurologists and a Physiatrist. I even saw a neuro that specializes in movement disorders and EMG-guided botox and he didn't accept me as a patient, said I need Botox but not EMG guided (that my problem was myofacial and not spasmodic torticollis/cervical dystonia).

Some have hypothesized that I've developed a fibromyalgia type of hypersensitivity in the neck due to all that I have been through. Dr. Angle is going to check around to see if there is someone in his network that may be able to help me.

That last paragraph sounds exactly what I have been told by my last physiatrist although she didn't want to conclude it was just fibromyalgia. She was 100% convinced that Annest should have taken my rib out and is sending me back on a surgeon hunt. But Ellis and my Pts are saying I will just develop scar tissue again bc that is what happened the first time around. I am pretty sure I developed scar tissue really quickly last time and it is not just because my body is quick at it but because everyone was too scared to go near my scar areas for a very very long time and also def because that partial rib is still in there. I am waiting to speak to Angle via phone soon.

Anyway I am updating on your thread sorry lol! But seriously the SCM spasms and bursitis are the main issues for me as well and they actually got way worse AFTER surgery. I hope the botox and injections help, keep us posted! I may consider botox as well, I really did not want to go back for more surgery but I might not be able to avoid it.

[nospam]

My Family Doctor (also Sports Medicine) is on vacation this week. The PA gave me two trigger point injections on each side yesterday and my shoulders are feeling better. I will likely be returning next week for the AC joint injection as I still feel a lot of friction deep in the joint. Botox is scheduled for Tuesday and I hope it all does the trick.

I'm diagnosing myself with Chronic Myofacial Pain Syndrome which is like Fibromyalgia but not (google it).

[nospam]

Originally Posted by nospam

Dr. Ando just hired a structural massage therapist (Coleen Cackowski). I am going to try a session with her next week to see what its all about.

I saw Coleen today and I was very impressed by her approach. My main problems are in my SCMs. She started in my lower body and identified all of the misalignments caused by years of chronic pain. She didn't touch the neck until the very end after really working my shoulders. I am going to be reducing the number of PT sessions and doing more massage therapy (Coleen & Melissa Ricker) and Pilates. I start back on Pilates Friday.

[parbie]

Originally Posted by nospam

My Family Doctor (also Sports Medicine) is on vacation this week. The PA gave me two trigger point injections on each side yesterday and my shoulders are feeling better. I will likely be returning next week for the AC joint injection as I still feel a lot of friction deep in the joint. Botox is scheduled for Tuesday and I hope it all does the trick.

I'm diagnosing myself with Chronic Myofacial Pain Syndrome which is like Fibromyalgia but not (google it).

Good luck on Tuesday with the Botox Marc!