Tumor T10-L2, post surgery and post radiation

[von]

Hello everyone. I've been looking for information on these tumors but there's little to go on on the internet so I decided to make a post and share my story. Information is power. I am a 32 year old female. I am healthy outside of the symtoms caused by tumor.

*Related health information marked by Navy text. In cause anyone is looking for specific info.

I have a intramedullary ependymoma on my spine from the T10-L2. It's on the far part of the spine and difficult to get to. I went to Barrow's Neurosurgery in Phoenix. My neurosurgeon put me into surgery for 8 hours but they were unable to remove tumor due to location. Took enough to biopsy. He said removal would risk paralysis.
There was a cyst in the spine, running up the length of the spine, which they popped.

Inflammation was causing symtoms. Symtoms presurgery: Numbness below the waist, pain in the quadraceps, slow bowel, muscle weakness in both legs, more pronounced in right, drop foot on the right. I was walking with a cane by the time of surgery, barely walking at all. Fatigue was constant and severe.

Post surgery cyst was popped. Tumor was benign. After 3 weeks, the pain in the quadraceps had stopped, some feeling in the feet, lower legs, buttocks, and stomach had come back. The best part was I could eat again, just about anything. I had an appetite. The muscle function didn't improve as quickly as the other symtoms.

The neurosurgery panel suggested radiation for my case. I started radiation about 1 month after surgery. Was given corticosteroids for the inflammation. Toward the end of surgery I was doing 2 miles on recumbent bike daily. No fatigue.

Oncologist pulled me off steroids after radiation was finished. Now the inflammation has come back worse than before. I lost all feeling again, lost appetite. I'm 5 months post radiation, starting to get some feeling back in my feet. It has been brutal. It does seem to be improving over time, but is so much slower than I expected. Needless to say, I'm upset that I've gotten back the same symtoms I had pre-surgery and worse in some cases. There is a lot of pain and severe fatigue.
Now add bladder dysfunction to that list, but seems to be getting more manageable.

I had an MRI 2 weeks ago, neurosurgeon said things look as good as they can. No mutation or weirdness. Said cyst has filled with fluid again but wasn't concerned. He said I'd have to wait it out. 2 years for cells to replenish when I voiced my concerns over the symtom returns. Seems like he thought inflammation was plausible for the symtoms.

Currently on 1800 mg ibuprofen daily, 3 grams fish oil daily. Only eating fresh foods. 10 minutes on my recumbent bike, 15 min walking. Using wheelchair for out trips mostly, walker in home. Will post update in a couple months.

I was curious if anyone else had any info on the radiation and effects. I would figure having it in the spine is different from most others and even a little swelling could make life difficult. Feedback of any kind would be much appreciated. Best wishes!

Von

[kansasmom]

Hi Von, my son was diagnosed with an ependymoma at age 15. He has had surgery and radiotherapy. The surgery was L1-L4 and the radiotherapy T9-S5. His experiences - symptoms and outcome - sound somewhat similar to yours, though he does not have a cyst.

His main tumor is L1-L4 and he did worsen before and during the radiotherapy. Initially his left leg was the bad one, but the radiotherapy was done because he continued to have problems after surgery and his right leg deteriorated rapidly. His left leg has recovered well (except that he still has foot drop and altered sensation, with pretty much no feeling below the knee). His right leg is also recovering.

September/October last year was about his worst point - he could not weight bear and could barely still get around the house with his walker. One year later he has significant gains - he is now very fast with his walker and barely needs it to take any weight at this point. His right leg foot drop has improved also (he can pull his foot up against gravity now).

He was on dexamethasone for months in 2011 and it was very difficult to get him off. Now, however, his only problem is with periodic zap pains in his left foot. His back no longer hurts, even when he lies flat. He is pain free when sitting and his night-time hip pain is gone also. At his worst he could not climb stairs at all, now he practically runs up stairs - provided he has some support on both sides. I'm pleased to say that he has had more gains than I'd expected and he continues to improve slowly.

Please do send me a message if you have specific questions about our experience and I will try to help.

[von]

@kansas mom. Thanks so much. That's so very helpful to know

Symtoms seems to be getting better for me. I'm eating all frozen vegetables or fresh and the damage done by radiation seems to be handling a little better that way. Still struggling with inflammation and healing. Still a lot of pain. Apetite and intestinal function has improved slightly

I am starting to feel human again though. I think with inflammation you get to feeling so bad that you don't move and can't think. It's a hard phase. Recumbent bike at 10-13 min daily now. A lot of little nerve pulses at times, tingling in my feet, pain in my legs. Feeling something is a good sign. Still on 1800 mg ibuprofen daily. Had tests done at doc to make sure vitals are functioning ok.

Will post another update in a couple months.

[von]

kansasmom I do have one question for you. Did your son have a good bit of fatigue?

I notice for a lot of people with tumor in different location they mentioned that it didn't bother them or that they could work. I wonder if it has something to do with the bowel area and changes there or if the inflammation and pain has caused the fatigue. It's a curiosity thing more than anything.

[kansasmom]

'C' needed a lot of rest during the radiotherapy. He is doing much better now, but is not quite back to the energy level he had before all this happened.

One thing that really tired him, but has recently improved, is the mental effort required to move in a new way. For a long time he had to think about walking and every other physical skill which changed. That was tiring. I'd say it's taken him a year to automate his new motor skills. Now he is really fast at everything he does - standing up, sitting down, transferring, propelling his wheelchair, walking with his walker etc. It is great to see - he was always a fast kid before this happened!

I think you will see improvements over time Von. If you can be patient with yourself, and just keep doing a little and a little more, it will help.

[von]

Thanks so much for the encouraging words. I am frustrated. Seems like doctors were attentive during procedures, but I can't even get a nurse to return a phone call post radiation. I find it extremely discouraging.

After popping the cyst (after surgery but pre-radiation), I didn't even have leg pain or the nerve sensations that make me over sensitive to any sort of touch or sensation.

(After radiation) I'm concerned knowing the cyst is back (though neurosurgeon doesn't seem concerned), but now symtoms are far worse than even pre-surgery. Loss of bladder control for example. The leg pain is back and worse than it ever has been. I'm hoping it'll heal, but I'm nearly 6 months post radiation and the chronic pain and exhaustion has taken a toll.

None of my docs are giving me very much feedback on what is going on and whether this is normal. Not sure what to do at this point but wait it out. Will make a more aggressive list of information and press docs on it. However, for now, I don't have another appointment scheduled for a couple months.

I am anemic. WBC and RBC are low. So I've been working on supplementing iron and folic to take care of that. However, still don't think it's causing the large amount of fatigue. Will post update after nex appointment.

[Dhananjay Damle]

Hello everybody!, I had tumor at T8 to T10 diagnosed as gliosis. I went through laminectomy surgery in september 2007 followed by radiation on liniar accelerator for 2 days. My preoperative symptoms like numbness in limbs, spasticity and abnormal reflexes are still ther and i still need a stick to walk. however i drive with my previous experience. i work full time, however it is stressful. i want to know if there is anybody with similar problems and who has completely recovered and can walk absolutely normally.

[peaceandlove]

Hi dhananjay,
I have tumor in T10-T12.I did laminectomy in 2010.Only biopsy. It show ganglioglioma grade 1.
I get married 2012.I cannot say my life is easy after tumor diagnosis.A lot of pain on daily basis.numbmess.hip pain lower back pain.leg tingling.burning feeling.Even i still work from 8 to 4:30 i drive each day 2 hours.I drive my wife today for her first day work.I am surviver because of strong pain.i still hope that god will help.I pray his mercy.I remenber those days with no pain.It is most miserable catastrophic matter that will happen to someone.Honestly am loose hope in doing my surgery with success.I rarly see some one with intramedullary tumor who get cure 100%.. good day all the best for you.Von keep fighting.Dont give up.I pray god to give you all the power to keep surviving.All the best.

[von]

Thanks and hang in there. I'm doing the same.

______
8 Months post-radiation. Tumor is still in spine. I'm getting blood work rechecked. A lot of off numbers are now ok. My blood counts are still low. I'd assume most likely from folic acid loss in ibuprofen, but not certain.

Meds: 1800 mg ibuprofen daily. 3Grams fish oil daily. D supplement.

Diet: Full anti-inflam diet. Sweet potatoes, saute spinach, veg soup, some fresh low inflam fruit and occasional shellfish, green tea, and cup of coffee in the morning. Soy and flax. Lots of veg, prob 80% of diet.

Current prognosis: MRI stable but I have one coming up soon, cyst returned with radiation.

Symtoms: Symtoms flux with inflammation levels. At worst: problems with urinary control, numbness below waist, severe leg pain, spinal pain, leg buckling, severe lethargy. At best: sometimes recently little leg pain, this is a new thing. Odd tingling in feet. Fair functioning with symtoms more minimal.

Leg function is spotty at best. I'm finding a lot of physical therapy hard to stomach as it puts pressure on the spine and ends up doing more harm than good. I do my exercises at home at a time when I know inflam level is down. There is a definitely pain caused in tumor spot by radiation. It wasn't there before. Some itching and healing, but process seems slow.

I am using a walker in house and wheelchair outside.
____

Hope feedback helps, if anyone has anything to add please let me know.

[von]

1 year follow up MRI (1 year post surgery), I have no mutations or growths from tumor. They told me the MRI looked clear. I will follow up with neurosurgeon in a couple months.

Symtoms from radiation still bad. Some feeling and cold sensation coming back. Pain is unpleasant, but feeling something instead of numbness from waist down.

Best wishes all.