Do things get worse before they get better?

[coxen00]

Hello,

My name is Chris. I was diagnosed with a intramedullary spinal cord tumor in early November 2016. I had surgery on 11/29/2016 to remove the tumor between C7-T2. The surgeons said the surgery was very successful. I was able to walk immediately after surgery.

I was discharged after 10 days in the Hospital, including 6 days in acute rehab. I was getting stronger and regaining sensation for the first four weeks after surgery. However, over the last 4-6 weeks I noticed increasing areas of numbness and the sensory loss has not improved. I've also noticed pain in my upper back near the surgery site. It's not debilitating, but a new symptom nonetheless.

I'm wondering if this is par for the course or sign of something more concerning. I expected my recovery to be difficult I did not expect certain symptoms to worsen.

I've called and emailed my surgeon many times, but my post op MRI was good so they don't believe there is cause for concern. Sometimes I feel like I'm bothering them or they think my symptoms are psychological.

If anyone else has experienced bad days, setbacks, or other periods of regression while healing I'd love to hear those stories.

Sincerely,

Chris

[etp]

Chris,
I had an intramedullary C5 -T1 tumor resection in October 2015 followed by a round of radiation the following Dec/Jan. I could walk within few days of surgery but was numb/tingling from chest down.

I do believe my pace of recovery was quickest in the first few months but that's also when I had the most to improve. My progress is now is so slow it's hard to notice but I do believe I am still getting better slowly. If not I'm just learning to deal with it. For me it does seems that the pain/tingling in some areas will get worse, occasionally with some burning, before I get some improvement in sensation.

I have had some back/shoulder pain come and go in the months after surgery but not present at moment. Some of the pain was in same spot as before surgery so the worrying was worse than the pain until I got the next clean MRI.

My biggest setback was about 8 months after surgery around the start of summer when I really started getting more active I ended up with Frozen Shoulder. I could barely use my arm for a bit, less than ideal with a pair of numb legs and sore neck but it eventually thawed after several months, stretching and PT.

I think the good MRI's are what's key as I don't think there's much that can be done about recovery.

Eric

[dave37]

First 4-6 weeks I got better, but have slowly been getting worse for the past 3 months.

I had pain in my left upper back and neck with shooting pains around to the left side of chest for a number of years. An MRI of thoracic spine WOW done in Oct 2016 revealed a tumor C7 – T3. Resection of the tumor was done 22 Nov 2016. Evaluation of the tumor revealed it was an Intramedullary Ependymoma, WHO Grade II tumor. Most of the tumor was too interconnected with the nerves to remove. I had 30 radiation treatments Jan – Mar 2017.

The day after the surgery, I had muscle stiffness/tightness from the left armpit down to the bottom of my left foot. For the first 4-6 weeks, this started to gradually get better. However, the more I walked and every time I had a bowel movement (regardless of consistency) the left thigh and buttock muscles would tighter up more. One morning 4-6 weeks post-surgery (about 2 weeks before starting the radiation therapy) when I went to get out of bed my left side from the armpit down spammed. It released after a second but remained tighter than before the spasm. Since then my symptoms on the left side from the armpit down have gotten increasingly worse. The more I walk the tighter my muscles become and my foot swells. I tried physical therapy twice but the stretching and movement made my condition worse. The increased tightness started in my foot and slowly moved up my side. As the tightness got worse my skin became extra sensitive to touch and the tingling increased. Over time as it continued to get worse my upper abdomen muscles on the right side as well as the left side started to tense up and become very tight, especially after eating. The longer I lay in bed at night the quicker my left side is to spasm.

Since the first spasm, before getting up, I start slowly moving the toes on my right foot back and forth, then the toes on my left foot. Next I bend my right knee several times then my left. After that, I move my right leg then left leg over the side of the bed and push myself into a sitting position with my right hand/arm. If I go slow enough, I can get up without my left side having a spasm. As my condition worsened, if I pulled the sheet or covers across my left leg, it would spasm so I had to take my right leg and lift the sheet up and off my left leg. Most of the time my left foot under the inside of the ankle and in the back is swollen, at least some of my foot muscles and my lower and upper leg muscles are tight making it difficult to walk properly. I am on 30 mg of baclofen but so far that hasn’t helped. The doctor says I just have to be patient but my condition is getting that bad that it is very difficult for me to work. Has anyone experienced these symptoms?

[destiny62]

HELLO! I started having terrible left buttock pain in 2015- running down my left leg to my knee. They first thought it was sciatica - but when they did an x-ray of my hips to see if it was arthritis - they could see something in my spine. So, after an MRI - they found I had a tumor in my spine. I was scheduled for surgery October 2nd, 2015. They performed an H/OT11-L1 Laminectomy & Resection Of Intradural Tumor with Dural Reconstruction - removing all the tumor. Thankfully, it was not cancerous. I was in the hospital 1 week - went home and fell multiple times - was re-admitted after one week - spent 10 full days in inpatient rehab. I was barely able to move my left leg after surgery. Both legs were numb from my waist down to my feet. After going home - I still had the numbness - it never really went away. I was able to drive - try telling people you can drive - but you can't feel your legs - so strange. While at home - I continued to fall. I fell in March of 2016 and broke my right leg in 3 places. Once that healed - I continued to fall. My doctor's didn't think that strange, so no tests were scheduled. When I had my year follow-up MRI - they found I had scar tissue in my spine that was causing me to be off balance - thus causing my falls. I was again scheduled for more surgery to place a bypass in my spine - basically bypassing the scar tissue - second surgery scheduled almost a year to the day after my first surgery. I was the only person in in my area to have this particular surgery. It HAS stopped the falls, but I still have the numbness - not as bad as after my first surgery - but still numb - and now I have noticed a burning sensation when I sit down - again nothing major, but still there. At my 6 week surgery follow-up - I told them I was not leaving the office until they scheduled one more MRI to VALIDATE there was nothing else going on! I was not going home to start falling again for another year. MRI came out clean - so, now, like ETP - I am just trying to heal. I have come to realize this may be life from now on and I am just moving on. Life doesn't end - it just changes. AT times - I stop and scream that I want my life back pre-October 2015. But, of course, that is not going to happen.