[Emmie]

Meds: Can anyone recommend an alternative to Zanaflex (Zanaflex really works for me, but I can't deal with the side effects) for muscle spasticity caused by the nerve injuries? (Valium/benzos totally works for this, but apparently it's strongly disfavored now because of the side effects of chronic use. And because you have to keep upping the dose.)

Muscle relaxers like Flexiril & Skelaxin don't work well for me, and wipe me out. Lyrica and Neurontin (which I took for years for the neuropathy) work fairly well on symptoms, but, as with the Zanaflex, I'm finally decided I can't deal with the side effects.

I have been doing a rotation schedule of a benzo one day, a narcotic the next day, and a flexeril or skelaxin the next, which means I'm able to keep the doses low (I don't build up too much of a tolerance since I rotate), and I mostly have the pain under control and can function day-to-day. But, frankly, I would still like to have a lot less pain and a lot more function. I also get these awful headaches that are like migraines, but (I'm told) are caused by the TOS.

They can inject botox into all the spastic muscles, but it is really expensive (I pay $600 for the medication each procedure, and it has to be CT-guided, and it has to be re-done in 3 procedures every 3-6 months. It's about 6,000 a year to manage it this way, plus the risk they'll inject the wrong structure and damage something). So I'm trying to minimize how much I rely on Botox.

Anyway, I'm looking for thoughts on new meds to try, and would love any suggestions.

Dr. Ahn: Also, does anyone have any thoughts they'd be willing to share on Dr. Ahn? I saw a very positive story here, but also a very negative comment, and now I'm a bit concerned. I see Ahn tomorrow for a consult.

[I have neurogenic and venous TOS (confirmed by MRNs), I've had it for ten years, and I'm contemplating surgery. I have pretty major functional limitations.]

Thanks in advance for any thoughts! My appointment is tomorrow.

[mrsD]

I would try some magnesium supplements. When people have refractory spasms, low magnesium is often the culprit. Loading up on drugs does not fix this problem.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Your target is 1/2 the RDA or about 200mg a day elemental.
Avoid OXIDE form which is common in many supplements. You need to read your labels carefully.

200mg a day is easy to do with diet also... Beans, 3oz of almonds, yogurt, all have good amounts of magnesium in them.

It is estimated that about 70% of Americans are low in magnesium due to poor food choices. Magnesium is essential for relaxation of muscle contraction. It also relaxes smooth muscle in blood vessels.

[Emmie]

Thanks, Mrs. M. I actually did eat at least 3 ounces of raw almonds a day (and yogurt every day) for at least a year a while back. (I wasn't concerned with magnesium, I just like almonds.)

Anyway, I don't think low magnesium can be the culprit, because I was definitely getting enough for a long time, and but my symptoms didn't improve during that time.

I also do physical therapy and other things for pain management, but without medication, I really can't function in my life, and my pain is out of control.

I've just been reading about baclofen, and wonder if I'd have the same side effects I get with Neurontin and Lyrica. Probably.

[(Broken Wings)]

Originally Posted by Emmie

Meds: Can anyone recommend an alternative to Zanaflex (Zanaflex really works for me, but I can't deal with the side effects) for muscle spasticity caused by the nerve injuries? (Valium/benzos totally works for this, but apparently it's strongly disfavored now because of the side effects of chronic use. And because you have to keep upping the dose.)

Muscle relaxers like Flexiril & Skelaxin don't work well for me, and wipe me out. Lyrica and Neurontin (which I took for years for the neuropathy) work fairly well on symptoms, but, as with the Zanaflex, I'm finally decided I can't deal with the side effects.

I have been doing a rotation schedule of a benzo one day, a narcotic the next day, and a flexeril or skelaxin the next, which means I'm able to keep the doses low (I don't build up too much of a tolerance since I rotate), and I mostly have the pain under control and can function day-to-day. But, frankly, I would still like to have a lot less pain and a lot more function. I also get these awful headaches that are like migraines, but (I'm told) are caused by the TOS.

They can inject botox into all the spastic muscles, but it is really expensive (I pay $600 for the medication each procedure, and it has to be CT-guided, and it has to be re-done in 3 procedures every 3-6 months. It's about 6,000 a year to manage it this way, plus the risk they'll inject the wrong structure and damage something). So I'm trying to minimize how much I rely on Botox.

Anyway, I'm looking for thoughts on new meds to try, and would love any suggestions.

Dr. Ahn: Also, does anyone have any thoughts they'd be willing to share on Dr. Ahn? I saw a very positive story here, but also a very negative comment, and now I'm a bit concerned. I see Ahn tomorrow for a consult.

[I have neurogenic and venous TOS (confirmed by MRNs), I've had it for ten years, and I'm contemplating surgery. I have pretty major functional limitations.]

Thanks in advance for any thoughts! My appointment is tomorrow.

I totally understand and have been there.

Well, my tolerable modification was Baclofen 10 mg for mornings, Flexeril 10 mgs taken at 09:00 pm, and go to bed.

For that morning drag, I would TOS around till I'd just have to get up in the dark a.m. hours, go to the bathroom, brush my teeth and splash my face with COLD water. Don't dry it off. Let it run down your chest and on your nips. You'll be awake after that.

OK. don't like that advice...

Plan B.

I did lessen my pain by acquiring 1 and buying 2 LED and infrared light therapy pads and treat my upper body, neck, back, leg, hip, arms, thumbs, shoulders, etc, and now since 12-2008, I am so much better. My meds are like Bayer a.m., maybe Advil Liquigels, maybe Tylenol 'p.m.

Now, I'm not totally painfree but I'm close. Driving a long distance is still a challenge and is painful.

oh, Neurontin helped me but had undesireable side effects of memory lapse that I am not comfortable with. Also so hard to shake in the morning.

Also, you must inhale water.

Learn relaxation and deep/belly breathing, yoga, stretches, something...

Plan C...

Alternative health care methods. accupuncture, so many strange things to discover. Kinesio Tape.

oh, yeah. I took Botox. It did help. You're right. It is expensive and not a quick fix, and scary. Some did help. I don't want to push it. I had some adverse effects, minor.

I had cervical epidural injections in '06 that helped me tremendously. Long story about Zanaflex not being able to relax my muscles for 6 years until after injections. After injections, I slept for 2 months before my good Dr. Atasoy figured out it was the Zanaflex and starting writing the Baclofen for a.m and Flex for p.m.

Maybe a log of your activities and meds could help you define what is going to help. I know it's aggravating fooling with it all the time.

Keep asking questions. Lots of info here. Use the "SEARCH" button above.

[tossucks]

Dr. Ahn: Also, does anyone have any thoughts they'd be willing to share on Dr. Ahn? I saw a very positive story here, but also a very negative comment, and now I'm a bit concerned. I see Ahn tomorrow for a consult.

[I have neurogenic and venous TOS (confirmed by MRNs), I've had it for ten years, and I'm contemplating surgery. I have pretty major functional limitations.]

Thanks in advance for any thoughts! My appointment is tomorrow.[/QUOTE]

If you are refering to Dr. Ahn in California, I dont think you can run away fast enough...do some looking into his background. Unfortunatly a friend of mine did not...she is now being re-treated by another surgeon in Boston to fix his mistakes.

[Emmie]

Yikes, tossucks! Yes, it is Dr. Ahn in CA. He confirmed arterial/venous/neurogenic TOS (which I've had for 10 years) and suggested an arteriogram and an venogram, to see how much compression I have (I obviously have some compression, but it's unclear if there's a danger it will throw a clot and give me a stroke).

I had read some articles he co-authored, and read about someone (on this board? I think?) who had a good experience with him. I understand the success rate for the surgery isn't great. He actually said it's generally better to live with it, if you can. But if I'm in danger of a stroke, someone will need to cut me.

Are you able to share what kind of bad experience your friend had? A lot of scarring? (I have been Googling, but maybe I'm not turning up the right info?)

Any other recs for TOS surgeons? I live in Los Angeles, but I might be able to travel. I am going to be in Detroit for the summer, and I have family in Massachusetts I could stay with.

[tossucks]

Hi emmie. Due to pending litigation I cannot go into detail about her experience....does that say enough?
I have heard many good things about dr. Donahue in mass. general. He considers surgery as a last resort...and is good at what he does. But again...I have not surgery with him, I only speak of what I have heard from others that have seen him.
All the best.
Cheers,
Jay

[(Broken Wings)]

Pondering...

I am not discouraging surgery for TOS. Just my decision and why.

I'm sure many TOS suffers have success with surgery...

To cut or not to cut, that is the question on a surgeon's mind, and at their discretion to do so, and if, and only if they deem necessary.

Next to God some say...

Well, at times I feel it's a toss up between a surgeon and a federal judge. Their decisions and judgments will have lifelong effects upon a person's well-being. For better or for worse... right or wrong and everything in between.

Working as a court reporter for over 20 years I have heard lots of stories.

Keyboarding being unmerciful for TOS patients, I still peck away

I have also heard, amongst surgeons and lawyers, that if you haven't been sued yet, you're not doing enough surgery. Word to the wise!!!!! but where would be without them?

And yes, I do know there are too many knife-happy surgeons out there, but I don't think it is at the TOS level. I truely feel TOS is one of the most difficult conditions to diagnose and get the correct help for.

And yes, there are some really bad surgeons that should not be cutting on nothing but paper. And yes, they can make a patient much worse than they bargained for and those are deserving patients of settlements for their added misery. I do get to hear the bad side of unsuccessful surgeries. It's bad all the way for those involved, patient, family, doctors, caregivers, hospitals, insurance companies, lawyers, etc.

Nobody wants a bad outcome for a patient. That is not the desired intent by anyone.

Here in eastern Ky, you can go to the best hospital and end up with the worst results or you can go to the worst hospital and end up with the best results, with no discretion or respect of person. There are many things in a hospital setting that can kill you, or cause you damage and more suffering. Try to stay out of there at all costs.

(MVA 10-2000)

Then later, about 2008 or '09, by info on this forum, I discover I'm suffering with pectoralis major and minor involvement. Finally an explanation. Another problem, yes, but understanding why I'm suffering is helpful. The medical providers were clueless about my "upper body" chest tightness pain complaints and why. So, I don't feel surgery, by the best or worst surgeon, would have been successful by any stretch of the imagination. I feel I was listening to my own body as I never heard a logical reason why I was having soooo many symptoms.

I have had the best doctors and I also have had the worst doctors too. I praise Dr. Atasoy (Louisville, KY) and cuss Dr. Powell (Ashland, KY).

It is with these thoughts and realities that I elected not to go forward with bilateral rib resections and scalenectomies. Major surgeries, and by its own history, not very successful.

And even though I've suffered now going on 11 years, I do not regret not having surgery. And even though I have read many success stories, I do not feel I'm a LUCKY person. I am complicated by a bad neck and back then a very bad back. I do not feel I have the support system to take care of me after two major surgeries. Their depth of willingness would not guarantee a successful recovery. You need to realize your individual potential for success.

Now is not the time to see how things go. Aftercare can cause failure and is often the reasons why a surgery is not successful. Too late after harm has been done.

A surgeon gets credit for both success and unsuccessful outcomes, and most of the time, it's regardless of the "whys" and "why nots".

A story on paper does not necessarily reflect the reality of a situation.

Sometimes it's really not fair to them either. A surgeon takes a patient as they are. Bad habits, bad posture, little knowledge, and a failure to understand and carry out orders for whatever the reasons, all have their part in success and unsuccessful outcomes.

TOS patients are complicated. A cardiothoracic surgeon does many other surgeries besides rib resections for TOS patients. When a surgeon is tauted as a "TOS expert", you should get an expert in TOS. Not a guarantee for success, though. Your chances of successful treatment/surgery/care is greater. There are so many variables to consider.

I am stable and my pain from TOS is mild. Driving being the biggest problem. No surgeon would cut on me now, with my symptoms. I have never felt that my TOS condition was life threatening in any way, other than suffering with pain and lack of sleep, depression, and loss of socia, financiall and family life, which can be hazardous in and of itself. It certainly has taken its toll on my life.

I can only hope that better surgical approaches are discovered, more options for treatment become available, and patient awareness and understanding can be found for this miserable condition. Hopefully, in some way, I pray for relief for all.

[Emmie]

Thanks so much, everyone, for your thoughts. I really have a lot to think about. I'm definitely in no hurry to get surgery, and the more I learn about it, the less inclined I am to go for it.

Anyway, thanks again for all the helpful thoughts.

[tossucks]

Well said broken wings...and interesting pondering on your life in general.
We have our 11yrs in common. lol. Coming up on 12 this year...and I wish for nothing more than relief for everyone suffering from this condition.
Surgeons are trained to cut....thats where we need more dr's who are not quick to cut...but assist you in finding other methoods of treatement, and leave surgery as a last resort. That being said...I truely do understand why people opt for surgery. It is something I am now re-assesing after many year.
Cheers,
Jay