Update on my TOS journey
 

After putting up with the conservative Vascular specialist I see my primary Dr has referred me to a new Vascular specialist. I came out of there happy. He was surprised the other specialist never did xray's or MRI. My TOS is getting worse and the new specialist is concerned of the nerve damage being done as well as the damage to the veins. At this stage I am pretty sure he will recommend surgery. The way I look at it the neuro TOS is causing so many problems that I am starting to loose function and feeling. Although there is a risk having surgery will cause more nerve damage the risk is worth it.

I have had an x ray and just waiting on an appointment for a MRI with contrast so my new specialist can check the damage and how he will do the surgery. It's a huge step compared with the lack of treatment I was getting from my previous specialist. It's worth getting a 2nd opinion if your not happy with your specialists opinion. In my case I think the previous specialist was not confident doing the surgery at all where my new specialist is. Yes he is a vascular surgeon but he is also taking into account the other structures that are affected and how TOS affects me on a daily basis. I will post any updates as they happen :)

You'd think the first thing they would do is rx some x rays & MRI, just to make sure nothing else could be a factor...:confused:..

Sounds like the new one is much more on the ball.:D

Thanks Jo I am pretty sure I am now. The previous specialist only mention an angiogram but because I was on blood thinners he wouldn't go there. I was sure there was more tests that could be done. What I love best is I don't have to see a neuro specialist as well because the vascular specialist is on the ball. Saves the hip pocket :rolleyes:

wow, cool.

what bad affects can surgery have? more nerve damage you said in other ways?

i have never been told of any bad things because they (both opinions so far) say it is 100 percent successful. what kind of lie is that? 100 percent?

going to my 3rd and 4th opinions this month.

good luck!

Hi Heybro

There are several complications. and have been mentioned in the various threads here by others that have had the procedure done. Nerve damage is the one thing both specialists have mentioned where you are left with no feeling or use of your arm/s The structures around the rib include the nerves and sometimes a nerve may be damaged beyond repair. It depends I guess on the surgeon's skill but also every patient is different. My first specialist would not do the surgery at all because he said the risk was too high that I would be left worse with nerve damage as a result of surgery. This was without any tests to check the structures inside. My new specialist is checking how everything is positioned using a contrast MRI to determine the best possible surgical approach. He said their is a risk of nerve damage but I guess they have to tell you what the worse case could be from this surgery. It all depends I guess on the skill of the surgeon at the end of the day.

Another thing i have read here is there seems to be a few cases here on this forum where after about 3 years post surgery people are having problems. As I havent had the surgery I can't comment that but I am making myself aware of things before I sign up for surgery.

In addition to possible surgical complications, I think the most common downside of surgery is the development of scar tissue. I developed scar tissue on my brachial plexus as a result of surgery and, as my doctor said, scar tissue on my BP equals chronic pain. Unfortunately, you can't know how your body will scar.

Kelly

My surgeon says that this does not happen after he performs surgery. I've asked him repeatedly about posts I read here regarding scar tissue and each time he responds the same. He says he's done a lot of "cleaning up" of poorly performed operations, but that scar tissue and adhesions are not an issue for his patients.

thank you!

the 2 docs i have seen said there are no risks.

dr. molina said he has 100 percent success rate.

I think I'm skeptical of anyone saying 100% success rate..:rolleyes:
Unless they are mega picky about the pts they choose to do surgery on...:confused:

How long post op are pts being tracked...?? 2 months, 6 months, years?

I think if a surgeon picks his patients very carefully and conservatively, and only operates on those he can help, then 100% rate or close to it is possible. If you consider success to be helping the patient feel better than he/she is currently feeling. If you consider success to be a return to full mobility and life before TOS, then that's another thing.