Hello again all! This is the next in our series of blogs exploring the question of how long recovery takes...in this case recovery from a Schwannoma in the torso of the body. The common Schwannomas of this sort include Retroperitoneal Schwannomas, Brachial Plexus Schwannoma, and a number of others. We decided to put the question out somewhat loosely, attempting to explore what recovery was like for those with Schwannomas anywhere along the torso of the body (not including the spinal column - we did a string of blogs on those as well). Here are the responses we received from the Schwannoma Survivors group and we hope they are useful to you! - Neil
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Answer 1
My first Schannoma was located on the nerves on T5-T7 ( I believe ), it was the size of an orange. That was in 1994. The surgery was quite extensive. The surgeon cut 9 inches below my scapula, split my latissimus dorsi muscle , expanded my rib cage, extracted a rib , collapsed my lung, then removed the tumor. It was summertime and if the room temperature was not set at 70 or lower, I would labor with my breathing and start hyperventilating. I did not gain complete range of motion , of my right arm ever, bit was about 90% 7/8 months later. I still get numbness across my right breast/chest area and tightness/pain in right shoulder, chest, and ribs after tennis, bowling, football, etc. I also feel random " jolts " shooting within that area.
January 28, 2015, I had a rate gastric schwannoma( grapefruit size), stemming from my esophagus attaching to my outer stomach wall.
I am still waiting to feel "normal." The heat and humidity slow me down and I feel pressure in my upper abdomen. My spine often feels weak and pained. Funny, this second schwannoma was not too far from my 1st schwannoma.
My incision site still feels like it is " being pulled" and has pain. I was walking very briskly , about 2/3 miles , every other day, in May, but my body had other plans. So, I listen to my body. Walk 3 miles , but not AS briskly and I started using the Total Gym again.
I still suffer terribly with acid reflux and bowel movements ( sorry if that is too much ).
I'm going for genetic testing tomorrow. We ( my mom's side), we have breast cancer in the family. Grandmother and aunt died. Another aunt has been in remission for 15 years. Her daughter ( my cousin June), lost her 3 month battle with stage 4 triple negative breast cancer , on 12/18/2014. She was 50. My mom has been in remission since May; she is stage 4.
My mom, cousin June and June's sister( Karen) all tested positive for the same BRCA 2 mutation.
They are having their ovaries and other reproductive organs removed.
I have requested to be tested for Schwannomatosis, as well. So, I know I am still recovering . And I know I need to be patient and positive . Let's see what a year post-op brings.
Answer 2
To date no pain and I am on watch and wait. One year duration between MRI Scans. I can see the chest tumor - thus it is difficult to not focus on the fact that they exist and if growth continues - surgery.
Answer 3 (Brachial Plexus Schwannoma)
The recovery was really a breeze. I only had minimal pain the first few days after the surgery. They told me not to lift heavy objects for several weeks, but eventually I was able to lift pretty much everything I could before the surgery. More of an issue in recent days is that I’m not able to hold my 14-month-old daughter for very long. This week I had to take her to the doctor and didn’t want to put her down where she could get germy. I could tell my neck was beginning to hurt so I asked a family member to hold her some of the time. That helped a lot but for the next few days I couldn’t hold her with my right arm for very long at all. It isn’t quite the same feeling as a pulled muscle but I guess it’s similar. It’s a very dull, deep ache along the nerve where the tumor had been attached. But I’m more than happy to deal with this discomfort as long as the schwannoma is gone for good.
Answer 4 (Retroperitoneal Schwannoma)
It was difficult to walk and move about for a few weeks and having a bath was extremely difficult as my leg felt quite numb and I had a lot of abdominal pain. However, after about five weeks the abdominal pain was very intense and disabling. To go out I had to be in a wheelchair as I just couldn't walk for longer than a few minutes. On Christmas Day I was in so much pain I couldn't even walk to the next room, my two sons had to carry me! I saw my GP and he said he would admit me to hospital. I did not want this so I had yet another scan which proved to be ok. I was referred back to the Surgeon and he said the pain is more than likely to be adhesions/chronic scar tissue. He told me given the nature of the surgery I could realistically expect it to be up to two years before I really started to feel better. He then referred me to the Pain Clinic at The Royal Marsden where they altered my pain relief which helped. It was not until about April/May time that the pain started to subside and walking became much easier and I felt I was getting back to normality. As each day passed I increased my activity to a comfortable level.
I feel I have made a positive recovery, although a very slow process. I still have the same symptoms in my leg although they are no where near as bad as they were before surgery. I found the recovery during the first four months to be quite depressing as I was so frustrated at not being able to walk and do everyday things such as driving (I was told prior to surgery I would not be able to drive for three months), lifting the laundry and basic things and being able to go out when I wanted. I had to rely on being taken out in the wheelchair but I use to look forward to those trips out. I think you have to be positive and literally take one day at a time, and don't think about tomorrow, that's what helped me psychologically.
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