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.

I totally agree with you there Jo.


I have just come back from my family doctor who has already had correspondence from the vascular surgeon. I have an extra rib :( which is what not I was expecting. When I saw the surgeon on first consultation the other week he was concentrating on a particular area which now I believe to be where the extra rib is. My radial pulse is very weak when arms are beside me. This is something I was certain was happening but now I have it confirmed. I still have to have a MRI with contrast to check if there are fibrous bands and it's this that will determine how the surgeon approaches the surgery. He has said I have not only venus TOS but also arterial and neuro TOS. On a good note my blood clotting medication has been changed to Pradaxa which I have been waiting years to have. This drug will make it easier post surgery to make sure I don't clot but will also be a lifelong drug because I have suffered 2 clots in my lungs as a result of my TOS.

The MRI is posing difficult to obtain fully covered in my local hospital in Australia. I know when I have had the previous blood clots that the MRI department did not want to do the tests the doctor had ordered. As my surgeon is a consultant at the hospital he should be able pressure them to do the test or refer me to another MRI company who run out of one of the other hospitals. At the end of the day with my local hospital it's about cost cutting and not that they don't do the test. They tried to tell me they don't do the test but i have had similar there before but it was radioactive iodine and this time it's not radioactive.

I will post any updates as they happen to save me typing lol

Hi I have seen neurosurgeon and neurologist in Victoria, the look you get when you describe your symptoms! Have not been diagnosed with TOS my GP and PT both say possible TOS has been 5 months since I injured my upper back at work. Could you let me know the name of the specialist you are seeing (are you in Burwood Vic or NSW? and maybe he/she could HELP me shed some light on my pain, numbness, tingling, chest pain and the list goes on...
Thank you

Hi Dani

I am in Burwood Victoria. I see a Vascular specialist Mr Adrian Ling http://veinarteryspecialist.com.au/about-mr-ling It's very hard to find the right Dr but if you do have TOS Dr Ling will be able to tell you. He is more thorough than any Dr I have seen with x rays and MRI/CT contrast to see exactly what's going on with all the structures not only just the veins.

Are you from Victoria?

I had my results consult with my Vascular Surgeon yesterday. Found out that I don't have an extra rib alhough he did think I did when feeling that area. It's my 1st rib casuing some problems and yes he will do surgery. He wants me to see a neurologist and have nerve conduction tests first so he knows if there is anything there that he needs to be aware of. He mentioned focusing the nerve tests on my head, neck and chest/shoulder area.

We discussed my reasons for surgery
1) To try and prevent compression of the subclavian vein and more clotting
2) Prevent further damage to structures
3) Give me a better chance of a better quality of life

I know removal of the 1st rib is not a cure but it hopefully will be a good outcome and less pain and enable me to function better and do things even if their small things.

The wait to see the neuro was going to take 3 months but after speaking to the neuro's receptionist and saying 3 months was a long time when my vascular surgeon needs the consult to go ahead with surgery. The neuro phoned me back and said she would see me on Monday which is a huge relief. At this stage September/October is when I am likely to have surgery providing there are no hold ups with the nerve tests etc....

I am anxious to have the surgery done but I guess my Vascular surgeon dotting and crossing everything off his list so he has all the information available to him when he does to the surgery.

I will update after my neuro consult. It's good to know she does see a lot of patients with migraines. I suffer them pretty bad and they are related to my TOS symptoms. She may be able to shed some light on them too and why I get them.

i went through with the surgery and it was not a 100 percent the only diff now instead of my are being very dark blue it is now a light blue and still no pulse

I think the outcomes for us all are different depending on the surgeons skill, what damage already done can't be repaired and being aware of that pre surgery. Any improvement even if it's only small is a blessing. It's the long term damage I am looking at preventing by having the surgery so any improvement is a good thing. Sorry your outcome wasn't as good as you had hoped rad. How long since your surgery and what did you have done?

OzKira- I'm so glad to hear you're making progress with appt and your surgery. First ribs can be very pesky- I've now had both removed. Its great they were able to move up your appt too. Good luck!

I went to see my neuro earlier this week. She thinks my current right arm pain is another clot. She was looking at my CT scans when she said this. The CT didnt show her all the structures she needs to see in the brachial plexus. She works in one of our large city hospitals and managed to get me in for a free MRI with all the extra's my vascular surgeon wanted. The hitch is it wont be until October 3 because they are that booked out. Thats ok with me I just have to make sure I dont do anything that might move the clot in the mean time. I go back to her on the 10th Oct and she will do the nerve conduction test then. After that it's back the the vascular surgeon for the next stage of planning my surgery with all the info he needs. I am going to get my GP to do D Dimer and full blood tests just in case they need to know how the bloods are going.

At this stage it looks like surgery wont be until the new year sometime and in the hottest past of summer here in Oz.

I feel like a yoyo back and forward for Dr's and tests but thats part of the TOS journey :rolleyes:

Only a few weeks until I find out more. The past 2 months have made me feel like i am in limbo but I have been busy planning a house move but taking it slowly with the packing to avoid flare ups. There are some positive things in the new house that will made some things easier especially when I have surgery. It's also less drafty and has air con which is a bonus with summer fast approaching here. I will check in again after I have my MRI and NCS. After that I go back to the surgeon to talk surgery.

I hope everyone else is traveling ok

I hope you restrict yourself to light packing and unpacking...NO MOVING! :)

It's easy to get sucked into doing too much once moving day arrives. It has happened to me on multiple occasions even though my family knew I was sick. Just a result of poor planning and my own guilt sitting on the sidelines watching my wife & elders struggle. Hopefully you all plan ahead as best as possible.

We don't move for 6 weeks so packing a few boxes at a time. Luckily we are moving to a relatives house and cant move boxes in at stages with the big heavy stuff to go on a truck on the big day. I just have to convince my husband that we need to hire 2 men and a truck rather that DIY for which we will suffer :)

Update
 

I got my results from my MRI and CT contrast from my Neuro this week. I have got some nerve issues at C7/T1 and some further disk wear further up the neck. I have degenerative disk disease on top of the TOS. As other have found Nerve Conduction Study does not always come back with a result of nerve damage. Mine was normal but I was having a good day and my strength and pain wasn't as bad as it was on my first visit to the neuro. I know TOS surgery will not help me with some of my symptoms but as long as the clotting issues are dealt with thats my main focus and always has been after several PE's http://www.ehow.com/list_6418699_sig...ted-disk_.html. I see my Vascular Dr next week to discuss the results and plan from here. I am still opting for surgery soley for the blood clotting issues and freeing up my veins, arteries and brachial plexus bundle but will see what the surgeon has to say next week. Also discovered on the MRI was a cyst at the side of the brain behind the nose for which I have to see the ENT specialist. This cyst may explain some of my sinus and vision issues that I thought may have been related to TOS. I will update further after my surgeons follow up next week.

Also there was problems with the contrast for the CT scan. They were unable to get the contrast to move when my arms were elevated as the compression blocked it from moving in the right and left side

Update
 

I thought I would pop in and let people know I am still on the merry go round. The Vascular has just discovered (12 months later after CT) I have C ribs and my Neuro said I have nerve issues on my left Brachial Plexus which is what vascular has been going by. Well now I read my last MRI and it's on my right side not left!!! And they wonder why I have more issues with my left. They weren't reading the scan reports but reading each others notes which were incorrect. As a result I have no faith in either Dr and are being referred to the hospital clinic by my GP. I am waiting to have an angiogram to prove I have compression issues with blood supply on both sides. He is disregarding previous dopplers.

Always a good thing not to trust your Dr and double check the reports from tests. Yes they do get things horribly wrong :(

Sydney c7 extra rib fellow TOSer!
 

Hi Kira,
Sorry to hear you have extra ribs too. I have on both sides in the same position as you, but due to my singing I can't justify the surgery. I can't do operatic arias without thoracic rib age lift, and risk to the diaphragm is just too scary!

I only take mess about twice a week. The biggest problem seems to be for my husband tha I am always grumpy and not able to help with household stuff. But I can teach and sing, so am throwing lots of money at therapy, heat packs and dishwashers!

I am still struggling to find a doctor who will help. I have had amazing results with chiro and Alexander technique. I thoroughly recommend both to you. The chiro I have is light touch and no cracking. It is called network spinal analysis. Have a look at www.wellwellwell.com.au there is probably someone in Melbourne doing the same sort.

Penny loafer also posted something this morning about a clinic in Prarahn- doesn't help me, but see if you can find her post.

What I am struggling with is the constant decisions about what my body can handle and trying to explain to my husband that sometimes I just can't do any more. How are you coping with day to day?

Hope you find some relief.
Take care,
Ans

Thanks for your reply Ans. I am sorry to hear the problems this dreadful TOS has on you. I don't blame you needing to make the decision not to have surgery.

I am a blood clotter with a genetic blood clotting disorder which is how I found out I have TOS after a 2nd PE and diagnosis of effort thrombosis 3 years ago. My 1st PE the year before my 2nd was after I had chiropractic work so I am not allowed many therapies as a precaution of a bleed or moving a clot. I did try pt and do know of the clinic in Prahran that you mention but my pt was not successful and caused a massive flare and more nerve issues since then. I can only do light stretches now. I am on blood thinners for life but they dont always prevent a clot. That's why I am left with no option but for surgery because of the compression. The non dominant side is starting to flare up now I have been forced to use it more so I will eventually have to have the left side done as well. A medical report I got recently said that the first clot originated in my left subclavian vein and travelled to my right lung. It was the worst PE but the 2nd one started in the right arm and travelled to the left lung.

After having my life at risk twice so far from this I dont want to take another gamble with it.

My husband understands my condition luckily because he is that kind of guy and also he suffers from chronic pain and back injury. We make a good pair but I am going downhill fast with what I can do and self care is now something he helps me with as well as everything else I can't do. Luckily I still have my brain which he is happy about because his medications knock his thinking about.

I really struggle and had to give up work as a result. Keep going as long as you can working on what you love. I still have hobbies I do when my hands allow it but it certainly isnt something I could get an income for. I love photography but recently broke an expensive lense due to TOS. I am finding I have to buy special things like shampoo dispenser for the shower and other things that help. We are also looking at getting taps changes to handle ones because I just cant handle the knobs on anything.

I have nerve damage from my C7/T1 disk which affects the Brachial Plexus nerve bundle. All this Dr shuffling is causing a rapid decline. I keep happy though and have a TOS group on facebook for those that continue their hobbies and other things despite the TOS. Some of them are professional eg creative arts and photography. They would be lost if they couldnt work. Between us we come up with ways and things that might and do help us be able to do things. TOS has brought some of us together and we have a great support network on facebook 24/7 worldwide for people to chat to.

One thing I did find useful at the start that I still do today for TOS related anxiety and issues with breathing is mindfulness meditation. It might help you with your singing with TOS. It has done wonders for me breathing and I dont have the chest pain I used to. It takes a bit to get used to but once you get the hand of it it does help and also helps take your mind of the pain. I would be lost daily without being able to do this.

Thanks!
 

Hi ozkira,

I am so sorry it has gotten so bad for you. Mine is annoying, but yours sounds so hard to live with. Schadenfreude I know, but I keep being reminded how good I have it from all you amazing people. I don't think I have a clot risk. Just possible dissection of the subclavian artery. Which would be bad, but not instantly life threatening as far as I can tell. It's just so hard to find people to help with day to day care. I don't know if you have come across Alexander technique, but it is non invasive and can help you to manage your condition, and help you to understand the musculature so you don't hurt yourself after the operation.

Good luck with it all. And do let me know how you are getting on.

I will have a look at the Facebook page. Thanks for this.