Hello everyone! We have been doing the series in which we sought to understand how long recovery times are for people with various kinds of Schwannomas. Though we can't ask the question in exactly the same light - I wanted to also include our friends with Schwannomatosis. Schwannomatosis is the rare condition that predisposes a person to multiple Schwannomas in almost any part of the body. It is understood to be a rare offshoot of the genetic condition of Neurofibromatosis - and it can lead a person to have multiple Schwannomas along almost any nerve pathway in the body, except the auditory nerves where Acoustic Neuromas arise. And there is a known variant of Schwannomatosis called "Segmental Schwannomatosis" where people can have sometimes many multiple Schwannomas in one part of the body - in a leg, or a single area of the spine, for example. Though life with Schwannomatosis presents challenges unique to the condition - and there is not often something such as 'getting over' it...we did want to include the question to our friends with the condition. Here are there responses...Neil
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Answer 1
I was diagnosed with this this past February. They found a second schwanomma in my body in six months. I am still new with this whole experience. Right now I have continued about my daily life, but fearful of finding another one. I definitely panic more when I feel a pain often wondering if it is another one in my body I didn't know about. (The one in my foot I went with for years before really getting checked out because i thought it was just a cyst in my toe. I didn't realize it covered the whole bottom of my foot.) I was never one to panic before about aches or pains, now I do have to be more aware. I was in the process of trying to get life insurance and was denied the life insurance due to my schwanommas. They told me if I do not have another schwannoma for five years I can apply again. That was hard to hear.
Answer 2
I was diagnosed with Schwannomatosis one year ago along with two of my daughters. My son has recently been tested all clear. Still have four more children awaiting testing for the SMARCB1 mutation. My journey began over 5 years ago when I developed stabbing pains in my foot. I was given an operation to correct hallux rigidus in my big toe and was told that it would cure my pain. It didn't obviously! After years of foot x-rays, foot mri scans, spinal manipulation, epidural injection a doctor decided to send me for a spinal mri. The results came back with several small nodules/tumours in my lumbar spine! Only a few weeks later my then 18 year old daughter suddenly became unable to walk properly. She was taken to A&E where they did various reflex tests and a rectal examination and kept her overnight. In the morning she had an mri scan which revealed two thoracic tumours, 52mm and 18mm. She was moved to a nearby university hospital where they removed both tumours during a 7 hour operation. For days afterwards she couldn't move anything below the waist. She was desperately unhappy and is was so upsetting as her mother seeing her go through this. She eventually got up and about with a zimmer frame after two weeks but kept falling so was confined to bed with a catheter. She was moved to a specialist spinal injury hospital which frightened the hell out of her as there were mostly paraplegics there. After 5 days she discharged herself as she didn't fee she belonged there. She said she would get better more quickly at home where she was happiest. Which turned out to be the right move. She started university 3 months after the operation on crutches. She walked as much as she could and was down to one crutch after a few weeks. By January, 6 months, after the operation she was walking unaided. She continued to improve and two years later she says she is 92% her original health. She still has very slight foot drop but hardly noticeable. Myself, the surgeons won't operate unless my symptoms change affecting my legs or bladder/bowel function! Similarly my other daughter in London. I now have all my fingers and toes crossed that none other of my children are affected.
Showing posts with label Schwannomatosis recovery. Show all posts
Showing posts with label Schwannomatosis recovery. Show all posts
Tuesday, August 25, 2015
Sunday, August 16, 2015
How Long Before I Feel Better After a Schwannoma in the Torso?
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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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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