[tic2]

Just found out that i have compression of brachialcephalic vein causing decreased drainage of jugular veins, subclavian veins and other causing all sorts of circulatory problems in arms, neck and head. Most of the compression is by clavicle, first rib and manubrium.

Any one else in the same boat.

Costoclcaviclular compression - TOS??

[antikamars]

Glad to see you found out so much in regards to your condition. I had all of the same symptoms that you listed but didn't have as extensive of tests that you did. Had my surgery in August and still on a bumpy road of recovery. The only question as far as the symptoms that you listed are what type of head circulatory problems. Do you ever get numbness in you back of the ear region and pain in the forehead? I had that in addition to headaches.

Amber

[tic2]

Originally Posted by antikamars

Glad to see you found out so much in regards to your condition. I had all of the same symptoms that you listed but didn't have as extensive of tests that you did. Had my surgery in August and still on a bumpy road of recovery. The only question as far as the symptoms that you listed are what type of head circulatory problems. Do you ever get numbness in you back of the ear region and pain in the forehead? I had that in addition to headaches.

Amber

I have tinnitus which is pulsating and vibrating random sharp pain in temporal area, pain above eye, random ear aches. Tingling in face, numbness around mouth, swollen face, and today climbed 4 flights of stairs and then realized I could not feel my feet. Scared the h!! Out of me
Do you have a venous hum or pulsating tinnitus?
Arms face and feet feel cold.

[antikamars]

That is exactly what I had before my surgery. Walking any kind of distance about killed me and I had trouble standing up for long periods of time, was forced to sit down all the time. I also have the cold feet and arms not so much the face but sometimes the nose gets cold. As for the venous hum have not been look at for that. Did have intense pain at the back of the neck area which was actually my main problem...as for pulsating tinnitus no.

Originally Posted by tic2

I have tinnitus which is pulsating and vibrating random sharp pain in temporal area, pain above eye, random ear aches. Tingling in face, numbness around mouth, swollen face, and today climbed 4 flights of stairs and then realized I could not feel my feet. Scared the h!! Out of me
Do you have a venous hum or pulsating tinnitus?
Arms face and feet feel cold.

[Haute Mess]

Originally Posted by tic2

I have tinnitus which is pulsating and vibrating random sharp pain in temporal area, pain above eye, random ear aches. Tingling in face, numbness around mouth, swollen face, and today climbed 4 flights of stairs and then realized I could not feel my feet. Scared the h!! Out of me
Do you have a venous hum or pulsating tinnitus?
Arms face and feet feel cold.

Yes! I have had almost these same symptoms in my face for the past three years. Several MRIs have ruled out MS and brain tumors so still no explanation why but I'm convinced its related to my TOS.

[tic2]

Originally Posted by Haute Mess

Yes! I have had almost these same symptoms in my face for the past three years. Several MRIs have ruled out MS and brain tumors so still no explanation why but I'm convinced its related to my TOS.

My nose gets cold and I have burning pain along the side of my nose.
According to Collins at UCLA my carotid arteries and veins draining my neck and head are all packed up. This affects the senses and obviously blood flow. Are your symptoms worse leaning forward? Do you have a venous hum. It feels like my head is vibrating. Driving me nuts.

[tic2]

Originally Posted by antikamars

That is exactly what I had before my surgery. Walking any kind of distance about killed me and I had trouble standing up for long periods of time, was forced to sit down all the time. I also have the cold feet and arms not so much the face but sometimes the nose gets cold. As for the venous hum have not been look at for that. Did have intense pain at the back of the neck area which was actually my main problem...as for pulsating tinnitus no.

What was the procedure that you had done? How do you feel now? Where are you on the recovery?

[antikamars]

Very tired today. At 3 months post surgery I am still trying to work out the kinks. I am dealing with low energy levels and almost no mental clarity, I still get sore in 3 areas trapezius, above the breast bone and back of the armpit. Have had 2 cases of severe numbness in the arm but Dr has me on steroids right now to help.


The following is a post that I had done about my surgery and where I was at that stage:

1.How was it right after surgery? Day of? The first couple days?

a.) right after surgery was pretty groggy and with the anesthesia that was given I couldn't feel the pain but the incision areas (subclavicular rib resection (2 incisions about 8cm each)were very numb
b.) had surgery at 2pm so was asleep most of the first day
c.) The first couple of days was very difficult. First night was spent in the ICU for close monitoring. I was given morphine as needed which on that first day was 3-4 hours. Moving at that point was very difficult but with the help of one fantastic nurse was able to sit up on the first night. Was moved to a regular room the next afternoon. During the time that I was switching rooms the took me on my rolling bed to get X-rays. Moving that day was difficult but I was determined to sit in an upright position during the times that I was not sleeping. That was also the day that I switched over to oxys. Stayed an additional night in a regular room and was discharged the following morning at 11am after my vascular surgeon, Dr. Akers of Premier surgical associates, had visited. I was so ready to go home that day and be in the comfort of my family that I had changed by myself out of night clothes and into frumpy casual clothing before the doctor had came to visit.

2.What was it was like when you left the hospital?

My husband who was at home taking care of the girls and visiting while the older was at school came to pick me up. The discharge process can take some time and if you are alone for the majority of the hospital stay you will need to start well in advance to get everything you need packed up.
The drive home can be semi difficult. You will want the path with the least amount of turns. Bring pillows.

3.What was it like getting around?

At first it was difficult but the more you move and try to sit up the easier it is. Have a table or cart with things that you frequently need. I'm on week 3 now (tomorrow) and it is still very handy to have. Mine is stocked with books, drinks, personal grooming items, medications, ribbon (okay I'm crafty).

4.What did you need help with? ie. how steady were you, how well could you take care of yourself? Help going to the bathroom? Showering/bathing?

At first things were still difficult and I welcomed a loving arm helping me to get up from place to place.
After the first night in the ICU they removed a catheter and so I was able to get up and go to the bathroom on my own. I was able to take a shower on the 4th day after surgery. A wonderful tip that I picked up from here are the Walgreens bathing wipes that were refreshing enough to not feel as though I hadn't bathed. I preferred showering because I could sit down in the tub let the water rain down and wash my hair/body with my good arm(surgery on left side).
What I did need help at first with was lifting items. I did not use my left arm at all for the first 5 days and after that being on the 3rd week nothing more than 5lbs and that is pushing it. *I'm a lefty who must have morning coffee and so I've learned to train my right arm to do a lot of the things that I feel my left side just isn't conditioned enough to do yet. (such as filling the coffee machine)

5.Did you need help with the incision at all? Anyone just have incisions above and below the collarbone?

I took my dressings off on the day after I came home. I have been since using vitamin E capsules broken open on my incision. For the first week and a half I did not want my incision to get wet and still wanted it to be protected and so I would put waterproof bandaid dressings (the see through tape looking kind- also purchased at Walgreens drug store). You cant wear it with the vitamin E and so I alternated sometimes leaving the showering strips on for 2 days. They are wonderful.

6.How did you manage pain? Did you need ice a lot?

When I left the hospital I was taking my Oxys about 4-5 hours apart and it would cause me to wake up. I did use ice packs at night to help on my worst pain spots and to stay asleep longer. I gradually increased the time in between my doses and just used them at night to try and get better quality rest. I came off them right before my 2nd week. (also have lowered the med that the doctors have had me on for the past 2-3 years for pain-no more ibuprofen or Tramadol and have decreased levels of cymbalta and lyrica)

7.What was it like the first couple of days? Challenging.

8.The first week? The hardest thing was getting used to doing things slow..is not in my nature.

9.The second week? On the 8th day after surgery I tested the waters out to a craft store to try and find things to keep me busy during recovery. I learned that day what pushing too fast means. I was browsing around the store for around 2 hours and while I only seemed tired and achy when I got home the following day was pure torture. I got a sharp pain that caused me to hurt every time I moved in my trapezius muscle. After 2 days in bed regretting what I had done I slowly started to feel better. (ice was what got me through it...on the direct ache spot and above my incisions).

10.a month post op? Not quite there yet. Had surgery on Sept 10th and today is the 30th.

11.two months post op? etc.? I'll let you know.

12.How did you deal with meals, dishes, laundry, shopping? Did you use public transportation?

I am lucky to have a wonderful husband that cooks almost every night, but I also did alot of quick meal shopping at the grocery store right before the surgery. I am able to make most things now without any problems. I can feel that I am pushing myself when mixing or cutting things most....more from the repetitive motion than anything. Still trying to take things easy and I am glad I have a dishwasher/and or wonderful spouse who scrubs the greasy ones.
Laundry is something I have to pace myself on not to tire myself out to easily. I have started a game since our machines are within out kitchen vicinity that I fold only a few things when I go by and when I have my piles I put them up only a room at a time.
Shopping is something that I enjoy all too much. I'm a bargain girl and am used to taking my time in stores scouring for the deal. That is what got me in trouble on the 8th day and I still have to watch myself with. I am now at the point where I am able to go out in about 2-3 hour periods without hurting too much. This is my biggest difficulty.


13.How active were you, ie. walking around?

The surgery has helped me feel wonderful...and I have to pace myself which is so very hard. If I am sitting or standing for long periods at this point I become sore and achy to the point that it is difficult to fall asleep. I have until Oct 17 to try and get to a point to where I am able to sit for long periods (have a sit down office job and am considering starting back at 30 hours at first which is the minimum my job allows and will allow me to keep my health insurance. My spouse is a stay at home dad to our 2 girls ages 2 and 8. I have enough FMLA left to make it until Nov 25th with it renewing in April.

14.What kind of tools did you use to make it easier for yourself? Any tips/suggestions?

1.) The button to adjust the bed was my best friend and what helped me to move around so quickly.
2.) Make sure you get a pain med dose before you go home because pharmacies are slow and you will want to just lay down once you get home. (save the extra trip out for your recovery helper)
3.) First few days slept on a comfy couch at a elevated position sleeping on my back with a pillow under my left arm as well.
4.) Take it slow. See above. I would have been better than I am now if I had. Learning from my mistake and trying to take it easy.
5.) Scott Sonnon's youtube joint mobility exercises have prevented me from having to return to physical therapy and slowly ease back into using the muscles.
6.) Have a wonderful support team.
7.) If you are used to doing most thing in your household try to prep well in advance so that it is less on you in those first few days. Example: I prepped school outfits for our 8 year old enough for the first 2 weeks (she has different classes such as art, gym, etc that she likes to dress differently for), prepaid the next 2 weeks of bills so I didn't have that on top of the hospitals, grocery quick meal (try to stay away from things that involve a fork or knife for the first week).
8.) Hot showers on tired muscles are wonderful.


Hope this helps someone. This thread was what helped me feel confident going through with surgery. I am not 100% better yet but that is what I am gear and working towards. The pain in my upper neck and back which was the worst thing and what was causing me the worse agony is gone. I still get these spots and numbness in that arm when I over exert myself. Its a slow process recovering and though it is difficult taking it slow I know that it is what will and does make me feel better. I just need to allow myself to heal. Thank you to this community that has shared their issues and experience. Before I found the forum I felt very scared and alone in my pain.

[Haute Mess]

Originally Posted by tic2

My nose gets cold and I have burning pain along the side of my nose.
According to Collins at UCLA my carotid arteries and veins draining my neck and head are all packed up. This affects the senses and obviously blood flow. Are your symptoms worse leaning forward? Do you have a venous hum. It feels like my head is vibrating. Driving me nuts.

I haven't noticed my symptoms being worse when I lean forward. I also dont think I have the venous hum - also known as bruit de diable (the devil's noise), and a great name for a rock band! I just know my face/head always feels strange and that is not normal. How were you diganosed?

[tic2]

Originally Posted by Haute Mess

I haven't noticed my symptoms being worse when I lean forward. I also dont think I have the venous hum - also known as bruit de diable (the devil's noise), and a great name for a rock band! I just know my face/head always feels strange and that is not normal. How were you diganosed?

Merci I'll have to remember that name. Definitely a devis noise.