[Reddawn600]

My neck and head were where my symptoms first begain post cervical surgery (thought now there's debate as to whether RSD cause the neck problems or the surgery started it) and are still the worst tho it has now spread down through my entire left side.

I'm just wondering if anyone else here has a similar problem and how you handle the migraines, light + sound sensitivity, etc. None of the meds that seem to help the rest of my body really work on my head pain or neck very well.

I'm getting worried that while my ketamine infusion may help the rest of my body, it may not work for the head pain.

Thanks,
Dawn

[finz]

I have RSD in my neck. They are calling the headaches occipital neuralgia. Occipital nerve blocks help a lot with them, as do ice packs, craniosacral massage, narcotics, a dark room, and ear plugs.

Encouraging my 16yo son who plays guitar and bass and more amplifiers and speakers than he has sense, to go to a friend's house also helps

[SandyRI]

My RSD started in my shoulder - and it spread upwards. The neck and head symptoms have always been the worst for me - I never had migraines before I had RSD. I went for months without being able to lie down on my head, the pain was awful. My RSD has also spread to my right leg and left foot.

Ketamine definitely calmed the symptoms down. But they are not gone. The sound sensitivity is better, I can tolerate more noise than I could before. But I still hate loud music, yard blowers and lawn mowers, garbage trucks, etc. The TV can't be loud, either. And I still get migraines - they seem to be hormone related more than anything else, but sometimes I can't tell why I get them.

I can tell when the ketamine is starting to wear off, because my sensitivity to noise dramatically increases. Or when a bad storm is approaching.

I've only had one occipital block, because I'm a wimp and won't let anyone near my head with a needle. I take Topamax, Fiorcet and have Toradol (I inject myself with that). I also have a new script for a Frova (a triptan med).

Before the ketamine I used earplugs all the time. I still use them sometimes now. They are a lifesaver. XOXO Sandy

[Reddawn600]

Originally Posted by SandyRI

My RSD started in my shoulder - and it spread upwards. The neck and head symptoms have always been the worst for me - I never had migraines before I had RSD. I went for months without being able to lie down on my head, the pain was awful. My RSD has also spread to my right leg and left foot.

Ketamine definitely calmed the symptoms down. But they are not gone. The sound sensitivity is better, I can tolerate more noise than I could before. But I still hate loud music, yard blowers and lawn mowers, garbage trucks, etc. The TV can't be loud, either. And I still get migraines - they seem to be hormone related more than anything else, but sometimes I can't tell why I get them.

I can tell when the ketamine is starting to wear off, because my sensitivity to noise dramatically increases. Or when a bad storm is approaching.

I've only had one occipital block, because I'm a wimp and won't let anyone near my head with a needle. I take Topamax, Fiorcet and have Toradol (I inject myself with that). I also have a new script for a Frova (a triptan med).

Before the ketamine I used earplugs all the time. I still use them sometimes now. They are a lifesaver. XOXO Sandy

Thanks so much for all of the info Sandy. I had 4 cervical surgeries before it was realized that I had RSD. I'm confused regarding your ketamine. Did you have inpatient infusions, outpatient boosters or something else?

I also use toradol which seems extremely helpful. I was given fiorcet a few times in the ER and it helped alot but topamax I've never tried.

I'm due for my 5 day inpatient ketamine on Nov 8th and am wondering how much it will help with the neck and head pain.

Thanks so much,
Dawn

[SandyRI]

Hi Dawn,

I started the 10 day outpatient protocol with Getson in Marlton, NJ (just outside of Philly) beginning on April 19th of this year. Then I went to twice a week for a month and then two days every month for several months. I now have a doctor in RI that took over my infusions (court ordered by WC judge) whose performed the last 3 or 4 infusions, I get them every 3 weeks.

I'm up to 200 mg every infusion, which is a pretty low dose. Everyone is different, and gets a different dose based on how they respond.

I tore my rotator cuff in Nov of 2006, and had 2 repairs - in May of 2007 and April of 2008. I was finally diagnosed in June of 2008, but I likely had it for a long time.

I believe you have written that you are going to Richman in NYC? HSS? I've heard it is awesome there, that the care is the very best. I truly hope that you wake up mcuh improved!!

I've responded extremely well to the ketamine. It has given me my life back - I returned to work after a one year LOA. The ketamine helped my neck and head a lot - Getson also did an occipital block in early June. I still have issues, though, everything is not perfect. I wake up with migraines periodically. The change in weather is really tough. And my job requires me to work with my right arm (the injured side) on a calculator and a laptop all day - the stress goes right to my neck and my head by dinner time! But overall, I am really happy to be back at work and earning a paycheck and my benefits.

Please let me know if I can answer any other questions for you. I've tried most other treatments (except the SCS or painpump). Only the Lidocaine worked, and it was nowhere as effective as the ketamine.

Wishing you the best, Sandy

Originally Posted by Reddawn600

Thanks so much for all of the info Sandy. I had 4 cervical surgeries before it was realized that I had RSD. I'm confused regarding your ketamine. Did you have inpatient infusions, outpatient boosters or something else?

I also use toradol which seems extremely helpful. I was given fiorcet a few times in the ER and it helped alot but topamax I've never tried.

I'm due for my 5 day inpatient ketamine on Nov 8th and am wondering how much it will help with the neck and head pain.

Thanks so much,
Dawn

[Triplet3]

Hello all-

I have recently been diagnosed with RSD. It started in my left wrist after a crush injury and has moved into my shoulder (and perhaps my legs - they are numb and moderately painful). I also have developed migraines (no history of migraines or headaches). The headache has continued now for 3 weeks and turned into a full blown migraine 3 times. After each migraine I'm left incredibly sensitive (even my hair hurts) for a day or two. When it is not a migraine the headache is borderline migraine. I have been taking the meds that the ER (have first pain mgt - that's how new this all is - next week) gave me but they barely touch the headache. I have 5 kids (3 that are 3 and under) so going into a dark room and being still and quite is not an option. Please give me any advice that y'all might have (regarding anything about dealing with RSD). As I said, I'm very new to this.

I hope that y'all are all having a good day

[gabbycakes]

Originally Posted by Reddawn600

My neck and head were where my symptoms first begain post cervical surgery (thought now there's debate as to whether RSD cause the neck problems or the surgery started it) and are still the worst tho it has now spread down through my entire left side.

I'm just wondering if anyone else here has a similar problem and how you handle the migraines, light + sound sensitivity, etc. None of the meds that seem to help the rest of my body really work on my head pain or neck very well.

I'm getting worried that while my ketamine infusion may help the rest of my body, it may not work for the head pain.

Thanks,
Dawn

Hi Dawn,

So sorry to hear you are having headaches. What worked you me and every once in a while I will get a migraine but post ketamine I really don't get them anymore. Anyway I was able to control my migraines with, believe it or not, Advil, a heating pad, bedroom dark and just rest and for the most part it would work. I'm sure that is what most people do. I wish I had some more words of advise.

I never released that your original surgery was a cervical issue. Did you have a fusion? My husband is at HSS right now he had a cerival fusion on Friday. He's had back issue's for years. He had 2 lumbars the first was a disaster then
he had a revision done a HSS which was a complete succes takes only advil on occassion and that was done in 2006, he was so lucky. Then one day in woke up with a stiff neck, his hand started to claw and slowly he lost the use of his hand. It started in November 2010 but we where dealing with his mom's cancer so he never got to go to the doctor. We finally saw his surgeron 3 weeks ago at HSS and again they just did an amazing job of diagnoising, confiring with other specialist and Friday he had surgery. His hand is already coming back so he is thrilled. He's a guitar player for 30 plus years and that was really bothering him because it was his dominate hand.

Dawn, I hope you feel better. Good Luck

Gabbycakes

[Reddawn600]

Gabbycakes-

I had pain in my neck and shouler along with constant headaches for about two years before I wound up in the ER from badly herniated C4-C7 discs. The surgeon who fused them in NJ is known by Dr. Richman to be an excellent surgeon but they never fused and my pain continued. The first time was an anterior fusion with donor bone.

Two years later, after my going back every few months telling him how much pain I was still in, he finally did another MRI and saw they never fused. He then did a posterior fusion with my own bone graft and also wired the spinous process to steady the movement of my neck.

As usual, for the first 6 weeks, I felt great, then all the pain started coming back, including really bad sciatic pain as I kept trying to keep walking everyday and stay in shape.

His advice then? A lumbar laminectomy. Yet again, for 6 weeks after, I felt great, then it all came back again, lower back, neck and head.

Last time I saw him, his only answer for me was that I must just have really sensitive nerves. So over a four year period of treating me, he never once suggested pain management or consulting with another doctor to consider something else may be going on.

The only good thing to come out of it was the 6 week pain cycle relief, it helped us and Dr. Richman realize what was giving me relief, the anesthesia.

Dr. Richman and one of his colleagues were honestly shocked that my neurosurgeon didn't pick up on my RSD during all that time.

I don't think your husband could possibly be in better hands anywhere then at HSS. I don't think I'd want any loved one at any hospital except there (and at this point I've been to a lot of hospitals!)

Please let us know how he's doing, he'll be in my thoughts,
Dawn

[Reddawn600]

Triplet 3-

I know how you feel, my problems, including the migraines began when my 3 children were all under 6 and I was in the midst of a divorce, fun stuff.

No matter how lousy you feel that day, make sure you get to the pain management appt and if for whatever reason you can't, call or get to your regular Dr. imediately.

Since I began ketamine treatments in Novemeber, they have helped alot with the migraines and left upper limb pain but didn't completely take it away.
I have tried lidocaine injections in my neck, one went great, the other not so well. It can be hit or miss. I have a botox injection scheduled for my neck in two weeks.

In addition to that, I take Topamax which initially I thought was extremely helpful but now to be honest, I'm not so sure as it may have been my last ketamine infusion that gave me the relief and not the Topamax. Topamax can also have some awful side effects for some people.

For the past week, I've been taking Fiorcet almost every 4 hours (I'm now 6 weeks off my ketamine and feeling it) along with Klonopin and tramadol. Since my ketamine, I stay away from narcotics tho honestly, 6 days straight of constant migraine is really testing me.

I find the most relief from a warm bath, a heat pack (do not use ice! it can cause your RSD to spread), I wear sunglasses in the house at times if I have to, ear plugs, wear an ipod with soft music around the kids to help block the higher pitched noises.

In your own room, try a white noise machine to block out the other annoying sound, block windows that cause glare.

Most importantly, find activities that in a pinch you can distract the kids with, a favorite movie or something and go lie down, relax, try some heat and give yourself a break. Stress is your worst enemy and as mothers, we're great at putting ourselves under it.

Remember to "put the oxygen mask on yourself first". You're no good to them if you don't take care of you.

Do you have an RSD doctor near you? There are plenty of people who could make suggestions.

Hang in there,
Dawn

Originally Posted by Triplet3

Hello all-

I have recently been diagnosed with RSD. It started in my left wrist after a crush injury and has moved into my shoulder (and perhaps my legs - they are numb and moderately painful). I also have developed migraines (no history of migraines or headaches). The headache has continued now for 3 weeks and turned into a full blown migraine 3 times. After each migraine I'm left incredibly sensitive (even my hair hurts) for a day or two. When it is not a migraine the headache is borderline migraine. I have been taking the meds that the ER (have first pain mgt - that's how new this all is - next week) gave me but they barely touch the headache. I have 5 kids (3 that are 3 and under) so going into a dark room and being still and quite is not an option. Please give me any advice that y'all might have (regarding anything about dealing with RSD). As I said, I'm very new to this.

I hope that y'all are all having a good day

[gabbycakes]

Originally Posted by Reddawn600

Gabbycakes-

I had pain in my neck and shouler along with constant headaches for about two years before I wound up in the ER from badly herniated C4-C7 discs. The surgeon who fused them in NJ is known by Dr. Richman to be an excellent surgeon but they never fused and my pain continued. The first time was an anterior fusion with donor bone.

Two years later, after my going back every few months telling him how much pain I was still in, he finally did another MRI and saw they never fused. He then did a posterior fusion with my own bone graft and also wired the spinous process to steady the movement of my neck.

As usual, for the first 6 weeks, I felt great, then all the pain started coming back, including really bad sciatic pain as I kept trying to keep walking everyday and stay in shape.

His advice then? A lumbar laminectomy. Yet again, for 6 weeks after, I felt great, then it all came back again, lower back, neck and head.

Last time I saw him, his only answer for me was that I must just have really sensitive nerves. So over a four year period of treating me, he never once suggested pain management or consulting with another doctor to consider something else may be going on.

The only good thing to come out of it was the 6 week pain cycle relief, it helped us and Dr. Richman realize what was giving me relief, the anesthesia.

Dr. Richman and one of his colleagues were honestly shocked that my neurosurgeon didn't pick up on my RSD during all that time.

I don't think your husband could possibly be in better hands anywhere then at HSS. I don't think I'd want any loved one at any hospital except there (and at this point I've been to a lot of hospitals!)

Please let us know how he's doing, he'll be in my thoughts,
Dawn

Hi Dawn,

Thanks for the input. This is his 3rd back surgery, the first in NJ was a disaster as I said and a revision at HSS was a complete success. He is using the group who did his second and is doing well not alot of pain, he had no pain before in went in. This situation happened very sudden with lose of use of his right hand. They did a posterior fusion and seems to be getting functioning of his hand back already. He will have to rehab. it back in OT in about 30 days. He should be coming home tomorrow.

I hope you are feeling better these days. Spring is coming, it will help us all.

Gabbycakes