WOULD LIKE SOME FEEDBACK AS TO WHAT TO EXPECT FROM A TRASNTERNAL STERNECTOMY TO REMOVE THYMOMA, THYMUS, FATTY TISSUE, ETC. WOULD ALSO LIKE TO KNOW WHAT TO EXPECT FROM PLASAMPHERIS. Thank you all (and this site) for providing me a vehicle to vent and get my emotions out!


After much deliberation I am moving forward with a Thymectomy this weekend. I did my homework and due diligence to finalize my decision. Visited two Neurologists, two opthamologusts, 1 neuro-opthamologist, one thoracic surgeon, a chiropractor and a "natural healing" doctor. I had read numerous threads on this site and have done extensive research on the internet.

My conclusions are as follows - felt the most peace with the surgeon and the second neurologist I visisted. I will be going in Friday 9/18 to start plasmapherisis prior to surgery which will be done on Mon 9/21. He will be doing a transternal sternectomy and says this method is the most full proof as he is able to really see what is going on inside. The Thymus along with a Thymoma and all fatty tissue will be removed. Says he doe this way b/c sometimes other procedures (lamproscopic, cervical, etc) do not always get all of the thymic tissue out.

I have full confidence in the surgeon I am working with. He came highly recommended and is a Heart and Lung Transplant surgeaon and Tampa General Hospital. Before making this decision I went through the research for going the natutal healing route but did not feel comfortable with what I was told. I wish I would have felt better about it b/c obviously I am going the most invasive route but really feel this is my least risky choice b/c of the need to get this Thymoma out of my body, among other things. Please pray for a very successful surgery and that my symptons start to subside or going into full remission afterwards. I know it may not be an immediate thing but I am hopeful I am one of the blessed ones that benefit from this.

I will keep you posted after I am back up and running.

Ive not been through the operation so all I can offer is my support and hope that you get some relief.

I will be thinking of you

Love
Rach

I had mine over 18 years ago but the one thing I remember most is to make sure you keep a small/firm pillow {or sheet folded small and tight} to hold against your chest. Do not do as I did when I got home and start sweeping the floor..LOL I also had the plasma exchange for a week prior to surgery and I have to say I felt wonderful from it. I also went into a drug free remission for 17 years from the surgery.. so the pain is well worth it! Like having a baby, when the pain goes away you forget it and the outcome is so worth the pain. Good Luck and you will be in my thoughts.

Yes I heard about the firm pillow thing. I am going to do my best and not try to sweep but it sounds like were alot alike and I am going to have a heard time keeping low key. I am hoping and praying for the same outcome as you w/ drug free remission and getting my life back. Did you have a Transternal Sternectomy too? Just curios as to why some say surgery do not relieve disease. My surgeaon said that other opt for less invasive procedures and some thmic tissue left over.

Good luck on your upcoming surgery and I'll keep you in my prayers.

I'll be interested in hearing about your experience since I will be meeting with a surgeon in early November to discuss my thymectomy.

These are common questions and should probably be stickied

Here's a step by step of what to expect from plasmapheresis (quite well written by another member) :

http://neurotalk.psychcentral.com/thread86611.html

Thymectomy what to expect:
http://neurotalk.psychcentral.com/thread83918.html
http://neurotalk.psychcentral.com/thread83926.html
http://neurotalk.psychcentral.com/thread76951.html
http://neurotalk.psychcentral.com/thread60763.html

I'm glad you've made a decision and are comfortable / happy with your surgeon/neuro. If you come up with any specific questions, feel free to shout 'em out.

I had the surgery a year and a half ago. It was the right choice for me too.

Cheers,

Brian.

Hi,

I had 3 rounds of plasmpheresis during the week prior to the thymectomy, but I didn't have a catheter put in. They just used the viens in my arms & wrists and said they would put a port in if they didn't hold up...I would not have made it through a fourth. In less you have a lot of incredible viens, I would recommend a catheter or port. I had a full sternum thymectomy in Nov. 02 and did not see the full benefits for 4 years. Any specific questions you have, I would be more than happy to answer. I wish you all the best and will keep you in my thoughts & prayers. Take care.

Hugs,
Pat

HI,

I just had mine out on Aug 19, and I'm still having a little pain. I don't remember at the moment what type I had, but it's the one with the vertical insicion between the breasts.

I don't want to scare you, but I am going to tell you my experience. I was in a lot of pain right after...the first day they kept me in ICU and thankfully kept me pretty doped up, so laying still was fine, but I couldn't move my upper body at all. By the time I went home on day 4, I was managing with Vicoden and Motrin, and feeling pretty good. The pain is actually more of a muscular type of pain. I had most of mine around my collar bone , and some in my shoulder areas and back. Now the pain is when I lift my baby the wrong way, and in the morning from trying to sleep on my side. You have to sleep on your back for a few weeks also. So yes it will hurt, but as long as you keep the nurses giving you pain meds you should be ok. Also, my husband was able to stay with me for my whole hospital experience, and it made it a lot easier if I needed something, so if you have anyone who can stay or even visit, do ask them to come. I've never had plasmapheresis, so I can't help you there. I honestly don't know how much having the Thymectomy will help me, but I had Thymic hyperplasia (enlarged thymus) pretty severly, so I'm just believing any day now I will go into remission.
Good luck I will pray for a safe and succesfull surgery.

Jessica

Will be sending positive thoughts / prayers to you - esp. on Monday. Pls let us know how you are feeling when you can.

I am impressed with your research, but must confess that I am relieved you chose the surgery over any holistic approach for this particular situation (and I am pro - holistic for many, many things).

Sue

I will definitely be sending good thoughts your way. I had my thymectomy in Feb. 09 and am doing quite well. I did not have the plasma exchange prior to surgery, I had IVIG instead. You will want to make sure that you have plenty of pillows for your bed when you get home. The only way that I could sleep was propped up on all sides. You also will need the pillow for laughing, coughing, sneezing.