Back from thymectomy
 

First, I'd like to than everyone for wishing me well beforehand. I know I didn't give much warning, but I was really trying not make a big deal about this. I've had so many procedures, I wanted to just see it as another one.

So, I posted about my experiences, the first night where the water went off at two. They fixed it at th 3:00 and called to let me know it worked again. I had a 4:30 wakeup call--after all that they only comped half the room. They said the upgrade to a suite was worth soemthing--maybe it was worth a bad night's sleep.

The procedure when well. The gland was slightly enlarged, but removed easily between two ribs, nothing broken. My only memory of the procedure is the very end where the only surgery scene I could think of was Anakin Skywalker's transformation, so I wanted to be sure they were turning me into Darth Vader.

After the recovery room, they moved me to an intensive care recovery unit for the first night. Don't remember much except that I was up coughing all night and had trouble getting guifensen. In the morning the doctor visited me..wanted to get jello and fluid in me and then perform some procedures. Unfortunately there was a miscommunication and when my parents were told to take all my stuff they thought that meant my glasses. So I was almost legaly blind and seeing two of everything the tray. only about half the spoons actually reached my mouth and the doctor was getting impatient (why a nurse couldn't have fed me, I'm not sure), so I tried to call my parents, but couldn't make a long distance call their cell...the call had to be made from the switchboard and transfered to me.

In the meantime, the doctor explains he's taking me off all muscle relaxants as they'll make me too tired and he wants his patients up moving right away. I said, "Wait a minute, there's a disconnect there. I have Stiff Man's, I can't be off muscle relaxants and walking around." (My parents think I was rude and telling them how to do their job--I think I was being my own advocate). The doctor said that he does about 20 of these a year and has a routine and that much sedative will disrupt his routine..I asked for a compromise to be worked out.

After speaking tot he neurologist, the compromise was that they take me off the morphine, use a weaker painkiller, and leave me on a lower dose of muscle relaxants. He warned me I'd be in more pain than he likes, though. I told him I've been in pain for 30 years, I can deal with it.

In the meantime, my dad shows up with my glasses. I can now see clearly, but still see two of everything. Must have been to out of it get scotch tape.

After eating, they take out the foley, and apparently I have a rare myasthenic complication where my bladder doesn't work, so they have to put one have temporarily and put me on a new med.

Second night, they decide I'm really not an intensive care patient and move me to a recovery ward. Their first comment is that I'm not on strong enough painkillers for the procedure I had. I told them i"m dealing with it, but if they can get me the better stuff, I wouldn't mind (that was no go).

This night, the cough wasn't as bad, but my oxygen monitor kept going off every five minutes. I called a nurse in who said, they know, they're montoring my breathing and I'm safe. I responded that I need sleep and she said she'd let me rest and left. That wasn't much help...so I put my earbuds and drown out the montior with the Moody Blues.

The neuro and the surgeon visit me the next day have the nurses get me up and taking a couple walks. I notice one of the doctors leaves a note on my door that I'm not to be disturbed unless there is an emergency or at my request. Unfortunately, the nurse, who was very nice, wakes me up for finger prick. It was actualy a good thing as I was finally allowed to drink and had full bladder, but I think about it for a minute and walk out and explain that I actually appreciate that she woke me u, but I don't understand why the doctor's orders were ignored for a finger prick. She askes if I remember the meds she gave me. I admit that I didn't (I think they were supposed to be moved to bedtime, but let it go at that point). I apologize for questioning her, thank her and go back to bed (I don't think I did anything wrong, but my parents insist that they nurses know their jobs and its not mine to question them--I now question everything I find strange since I was once given 30 mg once of OxyContin in 5mg generic pills, which I'm sure don't exist).

Third day I'm up and walking and they the surgeon comes back to see me. Says he doesn't see why I need to stay there except that he usually keeps his MG patients another couple days. He leaves the decision up to me, but the nurses discuss it and don't see why I need to take up a bed in the recovery ward. They ask if feel up to leaving, I tell them I can't as Le Mans isn't over. It was meant as joke, but I'm not sure how they took it. Anyway, that just about settled it and I was out there in about an hour (45 minutes before the end of the race). :mad:

I pretty much slept here from 6PM until 5:30AM with a break for dinner and here I am now. Pain wise, my hip surgery was worse (and honestly SPS pain is less acute but worse). The surgeon couldn't understand why I was on 30mg of OxyContin three times daily as thats a dose reserve for terminally ill patients. I said they weren't the only ones throwing the book at me (I don't think he quite gets SPS, but then what doctor will and he's an MG/Cancer surgeon). I'm actually on a smaller dose of painiller now than I have been in years, but its enough to control the pain from the surgery.

Anyway, I can't concentrate on this anymore, but thought it might help encourage people on the fence to know that I had a generally good experience, bur I recommend going to a neuromuscular expert and a suergeon who can do it arthoscopically.

Jeff

Jeff,

I'm glad that you''re doing well after the surgery. I totally understand your feeling that you had to be your own advocate in your care. I don't know what I would have done without my husband being my advocate and at times "getting in the face" of doctors and nurses simply because they want to "pigeon hole" you into their way of treating a procedure or illness. We have special "rare" illnesses and don't fit into their pigeon holes!

My surgery had to be through my breastbone because the thymoma was very large and attached to my lung sack and heart sack. I was placed on a morphine pump which monitors the amount of morphine you can use. Boy, every time I woke up I'd push that button because the pain was unbearable. The nurses finally said that I was using too much morphine (how can you do that?) so they took the pump away and must have placed me on a painkiller drip. I thought "you have your breastbone cracked open and see how you feel?).

Anyway as far as a patient advocate, after recovering from the surgery the neurologist wanted to send me to physical therapy. I don't think the doctor that performed the surgery wanted me sent to rehab that quickly but let the neuro make the decision. The neuro had diagonised me with MG and off I went. It didn't take a week before the SEVERE spasms of SPS started at which time the physical therapy doctor immediately diagnosed that I had SPS, they sent me back to the hospital for mestinon treatment. Thank heavens my husband spent the night in my room because he believes that they did not perform the proper procedure to do the treatment where you are suppose to get the mestinon at small dosages to see what your reaction will be, they just started giving it to me. It wasn't long before my lungs started to shut down and I was drowning in my own saliva and couldn't breathe. My lips were turning blue and my husband had them rush me to ICU where he was helping me to sit up and was using the equipment to suction my lungs all the while the neurologists were standing around wondering what to do. He eventually yelled at them to do something because his wife was dieing. If he had not been there I probably would have. I'm sorry but I'm sure I've told this story before, please bare with me my one brain cell only works parttime!

Again don't push your recovery. I believe that the easier you start the process the more successful you will be, but I'm not a doctor just a survivor. At least the surgery is over with!!!

Best of luck (as always),

Becky
Southern Bell
:grouphug:

I've broken ribs before and that was more comparable to the hip surgery. I can only imagine having my breastbone wired shut. My biggest complaint after this surgery is that I'm fatigued very easily. Morphine would have been nice right afterward when he took me off it, but now the oxycodone is controlling the pain. There's no way I could have followed his routine and done without the muscle relaxants, though, so I just had to bear with the pain. Kind of makes me wonder whether I really am just a fast healer or if the morphine pushes make the MG worse which delays the healing a couple days. I'd bring it up with him on my next visit, but maybe that would be pushing it a bit far.

I've had a broken rib twice in my life along with a broken shoulder and that was nothing compared to this pain. As I said I don't know what kind of painkiller they put me on after the morphine pump was removed, I just know that it did help but it's all a fog to me as I don't remember much about that time.

I'm now a believer that it never hurts to ask just for your education. I don't think that would be pushing it too far if the doctor understands that you want his opinion to compare to your thoughts on the matter. A good doctor would not be offended by the fact that you need all the knowledge you can get.

You know that any and all information we can get helps us understand these illnesses a little better if that's possible.

Becky

Glad to hear you're feeling better, and that you kept your humor. That was the funniest post I have read on here, ever.

Yes, apparently after asking about Darth Vador, I continued to explain to them who all the sith characters in the original Knights of the Old Republic were (which is weird because I haven't played those games in 10 years and never played the new MMO). I even accused one of the nurses of working for the sith. Anesthesia does strange stuff.

Too funny!! Yes - thank goodness we are not held responsible in any way for the things we (may) do or say post op anesthesia!!

I don't think its even legal to sign a contract if you've had anesthesia in the last 24 hours.