I use to be known on this forum as Gyspymom (I thinnk) it has been so long.

My situation has changed for the worse I am afraid My Tos specialist here in Pa dropped me as he said my clinical situation was worse and I could not continue to drive the distance to see him. Unfornately that left me without a Dr that believed in TOS let alone knew what it was. I finally after months found a family DR that was interested in seeing me and got me back on my meds (I had to go off MYSELF COLD TURKEY) I had by then developed RSD on top of TOS.

I had the opportunity to go to Texas and see DR Urshel who told me I needed BIlateral ribresection. My NCS/EMG were real bad unfortunately he did not accept my accept my insurance and I was due to leave Dallas in 2 days. So I am back in Pa scrambling to find a GOOD DOC to perform this surgery anyone on here have any ideas?

I checked the stickies and no new Docs added that are close by and of course I am sorely lacking in money
Can anyone offer any good advice? I'm scared!

Neverending

Hello,

I also had TOS and then developed RSD because of the surgery.

I'm surprised that nobody had said that it is a HUGE NONO to have surgery when you have RSD. If there is no way around it, they can do blocks to make sure that the RSD doesn't spread after you have the ribresectionso please keep that in mind too.

Please be very careful with this. The last thing you want is to have RSD on both sides and to spread elsewhere.

I had ribresection in 8/05. It's a major surgery and takes a long time to recover from. I don't know what your symptoms are with TOS, but the only reason why I had the surgery was because I didn't have a pulse on my left side and my arm would start to have HUGE problems if I didn't get normal bloodflow in that arm. I also have problems with my right arm, but with risking RSD to spread more than it already has, I can't risk it.

I would get a second opinion about the surgery if you can. It's just a risk to have surgery when you have RSD. I would also see a pain specialist regarding RSD.

I know this isn't an easy thing to have these issues - especially both at the same time. Unfortunately, I'm no where close to PA, so I can't help you with a doctor.

Good luck to you. If you would like to PM me, please feel free.

Thanks for your quick reply!

The rsd is in my feet and I feel is very mild compared to others I have seen. What I should have mentioned Is I am also vascular as I am loosing my pulse in both arms left more so then right. I have horrible headaches which I take topamax for my hands and arms go numb on me. The heaviness NEVER goes away. Muscle spasms in my neck and shoulders. I can be fine one minute and just turn my head like we all do and I'm in spasms or not I never know ahead of time. My hands change color constantly from
white to dark red and swell up.....I started having problems in 2000 but by 2003 I could no longer work so I have been dealing with these issues and arrogant DRs for a long time. I have also been going to clinical trials for the RSd and it seems to keep it in remission most of the time. I don't have to go back till JAn and then just for a check -up as now my feet are always cold.

Still looking for a GOOD surgeon near Pa

Neverending

Hi -
I remember you, Gypsymom from BT{braintalk forum}.
it had a crash in 06 - so this place was started up and many of us stayed here.
nice to see you again- but sorry you are having troubles still.

Hi Neverending,

I just want to say, just because you have it in your feet doesn't mean that RSD won't appear after your surgery in your arms. The nerves are all connected.

When you said your symptoms, it brought back exactly what I felt - except for the headaches. I didn't have that so much as the arms VERY heavy, and I could control the blood flow in the arm. It was white when I lifted it up and red/purple when I have the arm down. My swollen arm hasn't gone away. It's permanent because of the nerve damage from the ribresection surgery.

Have you tried something for the spasms? I take baclofen. It seems to work, although it doesn't take it completely away.

Good luck to you. Please keep us informed as to your situation.

Hi and welcome back. I am glad to hear from you and remember u but not glad that u have to come back!!

I also get really bad muscle spasm and use vallium and Thank God for this drug! It is a true muscle relaxant. I works on all muscles and is one of the best ones there is....however doc's don't like to give it out as it can be very addictive and they worry about their licenses. Baclofen and Flexaril are other options....both have worked for me in the past but not now.

You really need a neurologist who knows how to do pain management as well as botox for migrines. I am about to go for the botox treatment for it soon. I have talked to many people who have had this treatment and swear by it. Some of these people had a migraine every day!!

The headache is likely due to the pressure on the muscles at the back of your neck. This goes right to your eye and forhead(nerves I mean) so that is effected with h/a.

I am in Canada Calgary Alberta now was in Ontario...don't know if you remember......and my doctor has suggested I go to the USA to get imaging done on my brachial plexus to see what is going on as we don't have the technology. So I guess we all have to go somewhere to get the things we need. Which sucks soooo much as it costs so much to travel and money is always an issue for me.

I don't have answers aside from the neurologist suggestion. Botox as well....it does work.

Hope you're feeling better ...in any way shape or form!!
love and hugs,
Victoria

Victoria,

I have to especially thank you, you sent me relaxation CD and that got me through alot when I had to Detox myself from all my meds for lack of a DR I thought I was gonna die and wanted to.....the DOc I have now said it's a wonder I did'nt or at least do permanent damage to myself it took me 3 days with effects that lasted another week.
I saw one of the BEST DRS in the country DR URSHEL in DAllas TEXAS he did hank Blankok texas rangers baseball player he did his surgery.
and alot of other prominent people YOU HAVE TO HAVE MONEY or good ins to afford him. I did a consult and he ran tests he was absolutely positively I have TOS and his tests showed it... he recommended bilateral rib resection
How can I argue with that? Even the DOCs here in PA know who he
is. Which is a refreshing change from what I have had to deal with.

I can't take the pain anymore, or not knowing what my days are going to be like from one day to the next... Most of the time I stay in bed my upper body is just too heavy and my arms too heavy to carry around with me
I have help that comes in 3 days a week but they are changing it to 7 and I am so grateful I hate being like this.
Does'nt anyone understand?

ps it was a neurologist that referred me to DR URSHEL and my Ins does not pay for botox. neverending

Hi neverending...

Welcome back.. sorry for al the pain and confusion you are going thru.. I was diagnosed with RSD and TOS , the RSD last year and it is a fight to get thru the days at times. I am glad to hear that you have sen a great Dr. but I always rely on 2nd opinions when I think I need to. Hang in there and glad to see you again !

Dolfinz

I am a fellow TOS'er and RSD'er.

I had TOS surgery on my right side around 2000. It did help with the TOS a lot but it brought the RSD out which I believe I had anyway, the surgery just magniifed it.

I spent over 3 years in PT for the TOS. Although it helped, I felt I had no choice but to have the rib resection. Like Dealing said, I would definately ask for blocks before surgery. Every surgery I have had without blocks caused the RSD to spread, the ones I had blocks for kept if from getting worse.

As far as a Dr., could you maybe check in neighboring states that you would not have to go to far for? I had a Denver TOS specialist but I have heard others that had other types of Drs. do their surgery, such as Orthopedic Drs. around here.

I still have TOS on my right side but deal with less pain. I can't hang clothes on lines, and if I carry anything too heavy it brings the symptoms on also. Surgery doesn't do it all for TOS, but for me it helped.

Good luck in finding a Dr.

Ada

Who are you seeing in Calgary? Are they charging you a "user" fee for the botox? Let me know please. I am only 8 hours away from you, and may end up coming there for some treatment as well.
Thanks,
Trixlynn