Surgery on the 9th of September.

[m1ta]

Hi all,

I am a 34 year old male from the UK who was diagnosed with what my neurosurgeon believes is a benign primary intramedullary SCT from T2-T11 last month after a suffering for a couple of years with back pain and about 6 months of bilateral neurological symptoms. I am due in for surgery (10-12 hours due to the length of the tumor) on the 9th of September.

I have a pre-op meeting with the team the week before to discuss the surgery and wondered if anyone who has been through this could offer me an advice/questions to ask.

The neurosurgeon has basically given me an 80% chance of retaining some mobility/lower body function depending on the pathology of the tumor. Is this standard?

I am currently taking dexamethasone to keep the infamation and cord compression to a minimum prior to surgery. I do feel that my neurological symptoms are getting worse week by week though. Is there anything I should or shouldn't be doing? At the moment I am just light walking, stretching and taking luke warm baths?

Thanks in advance.
James.

[kansasmom]

James,

Is your surgeon going to use neuro-monitoring during surgery?

What to do? Do some things that you really enjoy. Line up some people to help after surgery if you can, or stock your freezer with food which is easy to prepare. Ask questions about rehab so that you understand what help is available. Ask for an estimate of the longest you could be in rehab so that you can set up a plan for taking care of bills and stuff at home if that becomes necessary. Have all of your contact information handy in case you need it.

Things I've done since my son got home from his surgery are: remove rugs (too easy to trip over), installed a better handrail on the staircase, moved his bedroom downstairs, widened doorways by installing swing clear hinges, paid attention to lighting (he needs to see his feet to know what they are doing).

I've also bought a narrow transfer chair which allows him to get in and out of bathrooms with narrow doors and bought a temporary ramp for getting in and out of the house. The transfer chair and ramp I spent time researching before I knew we needed them and I was then able to quickly order them when I knew they were going to be required.

I've also had an architect in for a brief look around to give me ideas for adaptations. I'm researching chair lifts and garage lifts and finding the names of builders. My son's tumor was not fully removed and he's still getting worse (in radiotherapy at the moment) so we may need these. It will be easier if we already know what to do and whom to call.

I'm sending you good thoughts for your surgery. I know it was scary sending my son under the knife. SCTs are hard, not only on the person afflicted, but also on those who know them. Surgeons can do amazing things though.

[m1ta]

Thanks for the reply. The information about the home adaptions was really useful.

My neurosurgeon said that they would be monitoring my spinal cord during the operation. Basically he said if the tumour was an ependymoma with a clear surgical disection plain he would be attempting to remove it entirely, however if it was an astrocytoma he would 'de-bulk' it the best he could and possibly look at some radiotherapy at a later date.

I was told I would be in hospital 8-10 days recovering from surgery, but wasn't given a time for rehab. Luckily I am a school teacher and we get 6 months paid sickness leave and then 6 months half pay in the UK. My wife is also due to have a baby in early February! I am trying to stay pretty positive, but I know I've got a tough time ahead of me.

Thanks for the wishes and I hope your son's radiotherapy helps.

James.

[Tanya]

James!
I had my tumor (C6,C7) removed on August 11th. I think the previous mom gave some great sound advice for home care. I have had way more numbness than ever expected but I CAN tell you that the feeling in my legs and feet is coming back. I was in the hospital for 9 days. 3 of which were in Rehab. I deiced to come home to do out patient PT. It is so good to be home and that in itself was therapy for me. I am 49 and healthy. Attitude and faith as gotten me through. We are given paths in life that are hard travel but what I can say from this experience is that I have learned that the mind and body are endless in their capability to adapt and heal. I am using a walker for distance and my hiking sticks for getting around short distances. I can even climb up and down the stairs! Keep the faith and know that your body is an amazing vessel. My prayers are with you and your family.
Tanya

[m1ta]

Thanks Tanya, I hope you keep continuing to make great progress. I definitely agree that attitude and faith are the key. Any chance of a recovery my neurosurgeon is able to give me WILL be taken.

[jellis]

Hey, James--Greetings from Texas. Tanya and I had surgery on the some day almost two weeks ago. It was her first and my second with the tumor recurring after 16 years. My advice is to be sure that your doc is the most experienced one for spinal cord tumors that is available in the UK. Our condition is rare and not many NS have that much experience. Neuromonitoring is essential. They can see on a monitor if they are going to damage motor neurons and nerves that control bowel, bladder, and sexual function and stay away from them. Some older docs do not use this technology! Get in the best physical shape possible prior to surgery. By the time that baby gets here you will be going strong and able to help your wife. There's no better incentive to get well than a new baby. Congratulations on that.

[m1ta]

Thanks Jellis!

This is my neurosurgeon, although I believe there will be another assisting due to the size of the tumor and length of the surgery. (I hope I'm OK to post this).

www.plymouthhospitals.nhs.uk/ourservices/a-zConsultants/I/Pages/IvanovM.aspx

He made it very clear they would be using neuromonitors during the surgery and said the team had successfully completed this surgery before, although he he didn't say how many times and I didn't ask. He did make it clear however that surgery to this part of my spinal cord carries risks of me losing my mobility/lower body functions which he put at 20%.

When he said this my wife became very upset, but the surgeon was very kind and comforted her and said something like "Look James, we are going to do our best for you and we expect you to do your best in your recovery period".

[kansasmom]

James, I remembered about your surgery. My thoughts will be with you and all those who care about you on the 9th. Your surgery will feel really short to you - I hope your wife has someone good to be with as it will feel longer to her! Looking back though, I feel no trauma about the memory of waiting for my son to get through. The hospital staff were great - most places they are. Hold your wife and your growing babe in your heart. I'm sure you'll all do well. Do bring us an update as soon as you are able

[m1ta]

Just a quick update. I am currently in the neuro ward at Sheffield Hallam in the UK. My surgery was 13 hours in total, the neurosurgeon thinks he got 95% of the tumour out. He claims the cord compression was so tight the tumour was almost 'popping out like foam' in places! I feel pretty numb from the waist down so far, but am able to move my legs. Apparently I will be starting physio tomorrow. Will post some updates at a future date.

[kansasmom]

James, it good to hear that you are through the surgery. It sounds like your surgeon did a good job in a difficult case. I'll be looking forward to reading your further updates. I hope you are able to stay positive, that you get home soon, and that your wife is doing OK. These SCTs are a big disruption and take a while to get to grips with.