[hollyjohnson71]

Greetings all,

This is my first post, and I wanted to share my experience and ask some questions of the more experienced TOSers.

Quick overview: Symptoms started 7 years ago during pregnancy and progressively worsened. I was diagnosed a year and a half ago with bilateral neurogenic TOS by George Thomas in Seattle (veteran of TOS research who is in his mid 80's). As I read about TOS, I literally wept as I finally had a condition to tackle. Like many, I had been through years of physical therapy for "possible slipped disc", massage therapy, and chiropractic treatment. By the time I went to surgery, it felt like there was a touriquit on my arm much of the time and I had so much trouble sleeping. My scapulas are winging and the muscles over my scapulas and in my hands are showing atrophy. My diagnosis was actually confirmed by nerve conduction studies showing clear blockage of nerve at thoracic outlet...I hear this is a rare thing to have undisputed neurogenic TOS...poo on all those medical professionals who think this doesn't exist!

We are military moved from Washington State to California, so I had my surgery at Stanford University this past Tuesday...4 days ago. Very experienced and terrific doc (Jason Lee). First Rib resection, Scalenectromy, neurolosis. Dr. Lee said my rib was extremely flat and the brachial plexus had become "attached" to the rib. I know I can't count my chickens yet, but literally right after the surgery I felt like I had a "new arm." I slept for the first time in years. I was released the following morning, and the second night, at home, I woke up and cried with joy because all of my symptoms are gone. Day before surgery my shoulder was so impinged I couldn't tuck a shirt in. Day after surgery I could put my hand all the way up to bra line behind back. My improvement is extremely dramatic. I'll be having surgery on the other side in a couple of months. Right side isn't as bad, but is well on its way. Oh...I should mention that just 16 hours after surgery I made a 2 hour ride home from the hospital with no pillows and no pain other than lung/breathing pain that continues. 38 hours after surgery I walked two miles along the beach. You could say I'm doing well! But my recovery is not without incident....

I ended up with a small pneumothorax which wasn't of too much concern to the medical team, but I was really short of breath and talked to the resident on duty today who asked me to go to local ER for chest Xray. Pneumothorax is healing, but I have a "massive" pleural effusion (fluid buildup in lung lining). Was sent home as being right on the cusp of siphoning off the fluid...again wait and see if worsens. I really feel the effects when I lay down...pain when breathing and short of breath, but nothing too scary. Anyone else suffer an effusion?

The thing I really wanted to ask you veterans about is fluid retention. I have gained almost 10 pounds on my 125 pound frame in the last few days. My legs have water on them, even my eyelids are puffy. Any of you experience this? Would put my mind at ease if I knew this was going away soon. I also have lots of air in my neck...hoping that begins to wane soon.

Thanks for listening all...and for sharing. I read this forum before surgery and it helped me prepare for some worst case scenarios. I hope my experience continues to be the miracle of healing it has been so far...will keep updating my progress.
Holly

[Sheri_TOS]

Hope you continue to recovery well. I also, had a positive EMG/NCV test and had my right first rib removed 8 years ago. I am still symptom free on that side but I am back dealing with TOS on the other side.

Your swelling may be due to all the IV fluids you had while you were in the hospital. Have you mentioned it to the doctor(s) as it could merely be fluid retention from the IV fluids/medications but it could also be a reaction to something. I turned out to be allergic to the bandages but didn't realize it right away. I've learned it doesn't hurt to ask a question.

[Mjg13]

Of course I'm not a doctor, This is not advice, only my personal experience. I ended up with a plural effusion after they removed my chest tube. It took abut two months to resolve and it was very irritating, my body had to absorb the extra fluid. I'm a respiratory therapist and have seen what is called subcutaneous emphysema/crepitus from pneumothorax. Rice krispy feeling skin which is air trapped within tissues. The body will absorb that air. Just keep an eye on it to make sure its not progressing. As far as edema, watch that too, very important to pee. Call your doctor right away if your. Not urinating. Not trying to scare you but the extra fluid combined with no urination can case pulmonary edema. Also, Make sure you sleep elevated. The fluid will shift and cause shortness of breath if you lay flat. It takes a long time to heal, don't let your mind get you. Give yourself a chance and credit for such a huge surgery. I was still in the hospital on day 4. Move your legs and walk to circulate fluid, deep breathing will expand your lungs.

[astern]

I had the pleural effusion - they had to tap the space for fluids twice. I was in the hospital 10 days for this - it took so long to build my strength back! This happened after I was released from hospital for my rt. rib resection. The left rib resection went without incident. It's highly likely that a failed surgery I had in the same area, by an inexperienced Dr., left the rt. lung weakened.


Hang in there holly, go slow, and congrats on the fast results!!
Anne

[hollyjohnson71]

Originally Posted by Mjg13

Of course I'm not a doctor, This is not advice, only my personal experience. I ended up with a plural effusion after they removed my chest tube. It took abut two months to resolve and it was very irritating, my body had to absorb the extra fluid. I'm a respiratory therapist and have seen what is called subcutaneous emphysema/crepitus from pneumothorax. Rice krispy feeling skin which is air trapped within tissues. The body will absorb that air. Just keep an eye on it to make sure its not progressing. As far as edema, watch that too, very important to pee. Call your doctor right away if your. Not urinating. Not trying to scare you but the extra fluid combined with no urination can case pulmonary edema. Also, Make sure you sleep elevated. The fluid will shift and cause shortness of breath if you lay flat. It takes a long time to heal, don't let your mind get you. Give yourself a chance and credit for such a huge surgery. I was still in the hospital on day 4. Move your legs and walk to circulate fluid, deep breathing will expand your lungs.

Thank you so much for your response...I feel much better knowing what to expect. Yes, I too have the crepitus and as I stated, the effusion. It feels like a pile of bricks got laid on my chest. I'm peeing pretty good, but the water seems to keep piling on. I'll go in again if it doesn't stop soon. I had congestive heart failure after giving birth 7 years ago, but have since been given a clean cardiac bill of health...but it's in the back of my mind as a possibility since I'm weakened from the surgery. Keeping a watchful eye...and knowing that I have a couple months of recovery from the effusion helps...I won't expect overnight healing. Such a blessing this board!

[SD38]

Originally Posted by hollyjohnson71

Greetings all,

This is my first post, and I wanted to share my experience and ask some questions of the more experienced TOSers.

Quick overview: Symptoms started 7 years ago during pregnancy and progressively worsened. I was diagnosed a year and a half ago with bilateral neurogenic TOS by George Thomas in Seattle (veteran of TOS research who is in his mid 80's). As I read about TOS, I literally wept as I finally had a condition to tackle. Like many, I had been through years of physical therapy for "possible slipped disc", massage therapy, and chiropractic treatment. By the time I went to surgery, it felt like there was a touriquit on my arm much of the time and I had so much trouble sleeping. My scapulas are winging and the muscles over my scapulas and in my hands are showing atrophy. My diagnosis was actually confirmed by nerve conduction studies showing clear blockage of nerve at thoracic outlet...I hear this is a rare thing to have undisputed neurogenic TOS...poo on all those medical professionals who think this doesn't exist!

We are military moved from Washington State to California, so I had my surgery at Stanford University this past Tuesday...4 days ago. Very experienced and terrific doc (Jason Lee). First Rib resection, Scalenectromy, neurolosis. Dr. Lee said my rib was extremely flat and the brachial plexus had become "attached" to the rib. I know I can't count my chickens yet, but literally right after the surgery I felt like I had a "new arm." I slept for the first time in years. I was released the following morning, and the second night, at home, I woke up and cried with joy because all of my symptoms are gone. Day before surgery my shoulder was so impinged I couldn't tuck a shirt in. Day after surgery I could put my hand all the way up to bra line behind back. My improvement is extremely dramatic. I'll be having surgery on the other side in a couple of months. Right side isn't as bad, but is well on its way. Oh...I should mention that just 16 hours after surgery I made a 2 hour ride home from the hospital with no pillows and no pain other than lung/breathing pain that continues. 38 hours after surgery I walked two miles along the beach. You could say I'm doing well! But my recovery is not without incident....

I ended up with a small pneumothorax which wasn't of too much concern to the medical team, but I was really short of breath and talked to the resident on duty today who asked me to go to local ER for chest Xray. Pneumothorax is healing, but I have a "massive" pleural effusion (fluid buildup in lung lining). Was sent home as being right on the cusp of siphoning off the fluid...again wait and see if worsens. I really feel the effects when I lay down...pain when breathing and short of breath, but nothing too scary. Anyone else suffer an effusion?

The thing I really wanted to ask you veterans about is fluid retention. I have gained almost 10 pounds on my 125 pound frame in the last few days. My legs have water on them, even my eyelids are puffy. Any of you experience this? Would put my mind at ease if I knew this was going away soon. I also have lots of air in my neck...hoping that begins to wane soon.

Thanks for listening all...and for sharing. I read this forum before surgery and it helped me prepare for some worst case scenarios. I hope my experience continues to be the miracle of healing it has been so far...will keep updating my progress.
Holly

Yes, to the swelling issue. I'm 4 1/2 months post op now, and still holding fluid retention, legs and face..... difficult to shift as I'm not able to move around as quickly, no jogging etc. Feel quite heavy ( more weight ) and bloated!

[Anne4tos]

Holly: Hope you continue to heal and keep up the updates. I'm happy you found Lee is be a competent surgeon. I only had one meeting with him, so my impression is limited, but I did literally RUN from the building.

I may have caught him on a bad day, but what made him exceptional for you?

[hollyjohnson71]

Originally Posted by Anne4tos

Holly: Hope you continue to heal and keep up the updates. I'm happy you found Lee is be a competent surgeon. I only had one meeting with him, so my impression is limited, but I did literally RUN from the building.

I may have caught him on a bad day, but what made him exceptional for you?

Dr. Lee is good at what he does, that is what mattered to me. He has done so many TOS surgeries..I wanted this done by someone with his level of experience. I can't imagine what happened to hadyou run from the building! By the time I met Dr. Lee I was fully diagnosed and ready to head to surgery, so maybe that made a difference???

[11sara]

Hi holly,
I live in the Bay area and I am trying to get Kaiser to outsousrce my surgery to Dr.Lee. I have had TOS for 5 years and am a candidate for surgery. I am glad to hear you had a good experience with Dr. Lee.

[mspennyloafer]

The bp being attached to ur rib is scary

Did you have a lot of scalene pain?

There's no way of knowing if rib and bp are attached except to cut you open right? Ughhhh