Had my first Botox injections today!

[bethann]

Hi,

Well I had my first Botox injections today! I will not know for a week if they worked. It was a little uncomfortable but I was able to handle it the one that hurt the most was the injection he put into my very tight neck mussel. The diagnosis the neurologist gave for the procedure was dystonia. Now he said that he felt this was caused from the surgery..... Did he just use dystonia because my pain is like dystonia (I have no idea). I asked him what that meant he said irregular mussel movement. Hmmmm..... My neck is tight and turns a lot to the left and not much to the right.... and it hurts 24-7 but today was a good day the pain was light when I went into the Dr office (isn't that the way!!). He gave me about six injections in my neck and head. He said he used a very low dose. I will let you know how it goes. I would love to hear from someone else that has had this! Is there anyone? I will let you all know how it works!!!! I go back to see the Doctor in two weeks.

Beth

[bethann]

Hi,

Well today is Saturday... I looked up botox side effects on line because my head has been feeling hot (kind of like hot flashes but not quite the same) I had diarrhea last night and my stomach feels queasy today and we were playing cards with friends last night and I had to excuse myself and go to bed my head was hurting (not my normal one sided headache it was my whole scalp area of my head).... I think those are all side effects of the shots. No sign of comfort help yet! said it will take around three days to start working ....that would be today!! I hope it helps!

Beth

[Chris]

I have been getting botox injections in my neck and shoulders for about 3 years now. It does work wonders it just takes time. When I started it was small doses, I think 1000 units of myoblox (another type of botox medicine). I gradually stepped up and now at 10,000 units (but my spasitcity is pretty severe). I get about 10 injections around the neck and shoulders. For about three days it feels like it actually stiffens up more but by about a week or so after the injections you feel the botox starting to work. Then I go back to the doctors two weeks later and they inject other muscles that are still tight or redo the muscles that aren't quite there yet. Wait another two weeks and go back for round three. After that my neck and shoulders feel so much better. This lasts for 3 to 4 months- then we start all over.

When I started botox I had no range of motion in my neck and I barely could raise my arms chect high because of the tightness. Now I can turn my head 50 to 60 degrees in both directions. Can lift my arms all the way up over my head and the pain from the spasticity is cut in half and somedays I forget about it all together. I have never once had any side effects from them- my only complaint is the first few days after the injections can be uncomfortable and when it starts to wear off it can be really uncomfortable.

Does your doctor do the injections EMG guided? That is where the needle is hooked up to a machine and when the needle is stuck into the muscle, the machine will let the doctor know when the needle hits an area that is spastic. Then the botox is injected and they instantly know if it worked.

Good luck with the injections, just give them time to take effect and you should see a differnce shortly.

[bethann]

Chris,
Thank you! I was wondering about this because I do feel stiffer! I had just told my husband I was not so sure about this botox thing because I feel yucky!!! The more I thought about it I was thinking that it said on the site I went to it takes at least three days to start to feel the effect and my shots were on Thursday and today is Saturday so maybe it will feel better tomorrow!! And I do have another appointment in two weeks. He did say he was giving me a low dose to start. Yes he did use the EMG machine. It sounded like a lot of static.

Thank you so much! I am glad to hear that what I am feeling is not strange. I just hope the headache does not continue....it does feel a little better this afternoon!

Thanks again!
Beth

[Chris]

I totally forgot about the headache thing. Before I started getting injections I used to have the worst headaches on my right side 24/7. My doctor gave me a shot in a muscle behind my right ear and that solved that problem. If your headache is not gone by your next visit ask him about it- it is amazing. I haven't really had a headache in years besides the ones in the morning after a nice evening (if you know what i mean).

Things should start loosening up soon. Just give it time. By this time next week you hould feel a difference. If you are geting more injections- thats even better. Then in 3 or 4 months you go back and your doctor increases the dosage, even better. Reminds me I'm about do to start my next round of shots in a few weeks. Good Luck and keep us posted on how you are feeling.

[susan]

Hey Beth,
Any results from your Botox yet? How are you feeling.
Susan

[bethann]

Susan, I can not say that the botox injection made much of a difference. I still hurt and my neck still locks up when I try to turn it to the right. I can turn it to the right but not as far as to the left. I have to turn my whole body to look beside me, driving can be an issue too when looking to the right. Then when I do turn it to the limit it shoots pain down my neck into my shoulder and around to the front I have the spasms.... so not much has changed. I do now feel a little tightness that I did not have before on my left side. So it is possible that the right was relaxed enough to make the right have to work more, I have no clue!The side effects from the shots themselves is gone and I have no problem holding my head up....

I am just wondering and Chris you could help me with this. With my next appointment (two weeks after my first injections) is he going to give me more? Or do you think he will say this did not help, oh well? I was thinking that if he increased or injected a different area maybe that will help? I am not sure what this next appointment is for other than seeing if it has helped?

We were out with friends a few nights ago and one of the men (a big guy) Laughed at something I had said then grabbed me around the shoulders and then gave me a BIG Pat on the back!!! I started to cry! Then I had to go home and take pain pills!! He was very sorry after... but oh my gosh this is what I hate and want that kind of pain to just go away!!! It is kind of embarrassing!I know he was being nice and friendly but sometimes I feel like I need to put a sign on me! I use to be a huggy person but now I back away often when I see hugs coming from someone who does not know about my neck and back pain. Who would unless I walked around telling everyone! You can't see it!

Beth

[susan]

Beth,
I am wondering if you might be having the same problem I think I am having. I think the majority of my pain may be neurogenic, coming from the spinal cord itself. I saw a spinal cord injury rehab specialist a month ago. I told him that I thought I was having muscle spasms in my right shoulder. He examined me and said he didn't see any signs of spasm and that he thought the pain was from my spinal cord. He told me it could take up to 2 years to go away, or it might not go away (not what I wanted to hear). He increased my bedtime Neurontin to 900mg. I can't really say if the Neurontin is helping or not, I think I am somewhat better, but maybe that would have happened anyway.
I think the feeling of spasm may be more weird spinal sensations.
Have you ever seen a spinal cord rehab doctor? That might be worth considering.
Susan

[bethann]

Well I had my follow up appointment with the neurologist last Thursday. The Botox did not work like he was hoping. UGH! My daughter (who is now home from China!!!) had said that maybe if I did not think about the pain it would go away.... I asked the Dr what he thought and he started to laugh.... and said no if you had no pain then maybe you wouldn't think about it! That made me feel better I think! What is so hard is I have tried about everything now and the Dr said to continue with PT (it is the only thing that gives me short time relief). He said he would call me if he could think of anything else he could do. He also wants to get the reports from PT (right now they go to my GP). I said I am thinking about hypnotism and acupuncture. Those are the only thing I have not tried. He said they can't hurt. So now I have to find a place. I was also thinking about going to Ann Arbor, MI I heard they have a good Pain Clinic. We now have different insurance that lets you go to any doctor as long as they take Blue Cross no referral needed.

[bethann]

Well I just wanted to bump this up to say that the Botox did end up working I took a little longer than we thought it would. I have an appointment to go back for my next injections on the 30th. I had a follow up appointment scheduled for December 2nd and called the Neurologist office today and said that the past couple of weeks I have noticed my neck is not turning again (I had regained almost full motion!) and my spasms are getting bad again (never went completely away but were much better). Here to find out that what the office did not tell me was in my records it said to call as soon as I felt it was wearing off to make an appointment for another round of injections! Well I am glad I called them today. I thought I had to wait until December! And I Have been getting pretty down feeling because I have been hurting so bad..... Sleeping on a heating pad every night again... and using it anytime I sit for a period of time. I thought it was something my Physical Therapist did. But guess what it started hurting worse at the same time that my botox wold be wearing off! So...........everyone IT WORKS!!!!