Hi All,

I saw my neuro today and it was a pretty informative appointment. Instead of my normal neuro, I saw the PA. At first I felt bad about that, as if I was being pawned off. It ended up being really good.

She was very informative and listened to me. The appointment lasted 30 minutes instead of the typical 5. She gave me a lot of information about alternative therapies that she suggested I try.

I've been taking 20 mg of Amitriptyline/day. She is going to up that to 30-50 during the next 6 weeks. She said the Amitriptyline should help with headaches, sleep, and muscle pain. If any of these three symptoms are not being helped by the dose I'm on, she wants me to up it by 10 mg. She said if we get to 100-150 without results, then we'll try something else.

She also revealed to me that I have a herniated disc at cervical C-4 and C-5. This was news to me! I thought maybe the pain I was having in my neck was "in my head".

She suggested craniosacral therapy (instead of regular physical therapy). I just did some research on it, and it sounds very interesting. She gave me the name of an office that does it in the area. She said all my neck, shoulder, and upper back muscles were in spasm because of the spine protrusion.

She also suggested an alternative chiropractor in the area that could help with the migraines. I'm going to see them and get evaluated.

She gave me a vitamin supplement that my neuro group designed to help with migraines. The mix is:

Riboflavin (B2) - 133mg per capsule x 3 capsules/day = 400mg
Magnesium - 133mg per capsule x 3 capsules/day = 400mg
Feverfew - 33 mg per capsule x 3 capsules/day = 100mg

She said they break it up to spread out the benefit and because it's rough on the stomach. She said it could take up to 3 months before I notice any significant difference, though.

If anyone is interested, here's the link:
http://www.pinepharmacy.com/store/in...TOKEN=57744666


I also brought up the UB Concussion study, and she said to go for it. She seems to be very proactive and I'm excited to have some new stuff to try. I'm going to call the UB study and see if I can be evaluated and possibly be a part of the study.

Hopefully I can find rides to all these new things. It would be tons easier if I could just drive! FRUSTRATING!

Sorry this is so long, but I was excited to share this info with you guys. I would definitely welcome any info or comments on all this stuff.

Kate,

You may get some benefit from cranial sacral therapy. It will depend entirely on the practitioner. Some of CST is valid science. Some is just plain hog wash. It is taught as a key course requirement at Osteopath Colleges.

Studies show that you can be assessed by ten different CST therapists and rarely will they give a similar diagnosis.

The key valuable component is the cervical manipulations. Some Physical Therapist have these same skills as do some chiropractors. Some PT's will have skills in myo-facial release that can help with your neck.

My PT uses myo-facial release and simple traction manipulations to great benefit on my neck. I had a chiropractor who was great with my neck yet 6 other chiropractors could not help with my neck. It is all about the individual's skills matching your needs.

If the CST therapist wants to work on the plates in your skull, I would suggest moving on to another therapist.

The UB study has a weak standard of recovery by my understanding. They are more about return to play than return of cognitive function. Regaining balance and muscle tone and control is valuable and worth pursuing but the cognitive issues should also be a goal in recovery.

I find it odd that the "recovered athletes" can return to play but still have issues with memory and mental processing. How can this kind of limited recovery be considered a recovery at all? Without a well functioning mind, the athletic skills are of little value.

Hi Kate,

I'm so glad the PA helped you yesterday. It definitely helps when you find a medical professional who is willing to listen and offer new approaches that bring new hope.

I've been taking the Magnesium, B-2, and Feverfew combo you mentioned for about 1 1/2 months now and have been feeling better. I'm not sure if it's from these supplements or if I'm just healing however. I chose that over Topomax and Amitriptyline because there are no major side effects. The only drawback is the magnesium can sometimes cause loose stools. However, it only happens occasionally and does not bother me at all.

On the neck issue, I just started seeing an upper cervicial chiropractor and he says that my neck problems can be the cause of the dizziness and headaches that I occasionally experience. He had a very long explanation as to why that is but I can't remember all that he said. I think it had something to do with the nerves misfiring in the spine and causing communication problems with the brain. Whatever the case, it really seems to be helping me already.

Anyhow, I'm glad to see that you're finding new hope in your recovery.

Don

Kind of raining on her parade aren't ya? She's really excited about having some options, rather than the same old same old. To me, the benefit of a positive attitude can have more effect on health than anything else.

Why shouldn't she try some alternative treatments, sounds like it's something worth exploring. Nothing ventured, nothing gained.

And regarding the UB place, I hardly think any neurologist worth a damn would implement a sports medicine recovery plan on someone who isn't an athlete, don't you?

My neurologist for example is the team neurologist for the Baltimore Ravens. That being said, he hasn't implemented any treatment for me to return to my sports activity, all has been geared towards getting me back to work and improving my cognitive function.

If anything, it's giving her hope, and that goes much further towards healing than anything else I've seen.

Mark,

Thanks for your advice and caution. I did read some positive and negative articles about the CST as well. I thought some of it seemed a little funny- almost laughable! I am totally interested in someone being able to relieve some of my neck pain, though. If it helps, I'm all over it. I agree about the skull plate thing, though. It seems weird.

I also agree that the physical recovery should be paired with the cognitive recovery. The UB study is interesting to me, but I'm cautiously optimistic about all of these "new to me" therapies.

I will definately keep you updated on all my findings. I do value your opinion, and I know you've been through it all! Thanks!


Don,

Thanks for the encouragement. It's good to know that the migraine mix of vitamins has been helping you. Like you said, though, it's hard to say if it's one thing or the other that's helping!

Yes, it does help to just have someone listen to you and offer new ways to be proactive in recovery. Thanks again for the encouraging words!


Jay,

Thanks for the defense. I think we are all just a little protective of new treatments and false hopes. I definately am welcome to caution and encouragement.

Although I'm excited about these new options, I know that if (*when*) I ever get better, how will I know what got me better? Was it just time, vitamins, etc....

I appreciate you wanting to go to bat for me. Thanks for being protective. I agree that a positive attitude and hope is extremely helpful in recovery for anything. Thanks Jay!

Hey Kate,

It was so nice to see someone with post-concussion symptoms describing their mood as "inspired". The quite cheered me up.

I'm glad that your appointment was such a positive experience. It is good to celebrate when things go well; helps to balance out all those unhelpful appointments that I'm sure other people have had.

I look forward to hearing how you get on with your various therapies.

I myself have been trying things one at a time, so that I have a clue about what is working, if something is working. I should probably be taking some supplements along with any therapy though, so I might look into the magnesium concoction. I'm not sure of the particular benefits of Mg.

If one of your therapies has a miraculous effect, don't forget to tell the rest of us!

CS

Hi Kate,

I'm so glad you've found someone who is proactive - and listens. I can't imagine how joyous that must have felt.

Thanks so much, too, for sharing the vitamin cocktail. I am absolutely going to give that a try.

Please keep us posted on your progress.

Cheers