What happens now?

[jennn]

I received the news today of a intramedullary tumor from c3 - c7. My local neurosurgeon referred me to a neurosurgeon in atlanta...appointment is tomorrow. I don't have a clue on what to expect, can anyone help?

[leks]

Hi jennn

so sorry to hear of the diagnosis.

regarding your appointment tomorrow, your surgeon will go through your Scans, explain what he sees and give you his recommendation. be sure to take a friend/family member with you. write down questions so you dont forget what to ask. questions like~; how many surgeries like this have you performed? what are the possible side effect/deficits from surgery, if surgery is recommended, do current neuro deficits out weigh deficits from surgery?

you dont mention if you have any pain/tingling/burning/numbness/weakness.

my tumor was c2-c5, so quite close to yours

[cyrola]

Hi Jenn,

How did you go? Sadly you are about to face a new life, one that requires you to be strong. But you can beat it. There is life on the other side.

There are many great posts here. Read widely and asks many questions.

May the spirit be with you.

[jennn]

The neurosurgeon wants to narrow down the of tumor to determine the best course of treatment. On Wednesday, I had a spinal tap and should get the results next Wednesday.

The original reason I sought treatment was due to right arm pain, numbness and tingling and right foot drop...I didn't have pain in my neck. Since the spinal tap, I have horrible pain in my neck and upper back.

[Bird]

Hi, Jenn. I hope you feel better after your spinal tap! The only advice I can offer you is to choose your neurosurgeon wisely after researching her/him thoroughly. This is the time to get someone who is excellent. And now for the encouragement: It is most definitely possible to remove an intramedullary spinal cord tumor and have a full, happy, excellent life after. I'm happy to report that I had my tumor removed a few months ago and I'm doing great now. The recovery requires patience and a positive attitude because it can take time and some of the sensations can be odd, (many people get worse for a while post-surgery) but my "new normal" is fully functional and happy. Hang in there-

[jennn]

Thank you, I truly appreciate your encouraging words.

Sent from my XT1080 using Tapatalk

[lw]

Hi Jennn,

I'd just take each day at a time at this stage until you know exactly what you're dealing with. Depending on the pathology of your tumour, it's location and the severity of your symptoms, you may not even require surgery in the immediate future. Most of these tumours are benign and you may well be placed in the 'watch and wait' mode. However if you do need an operation there is every chance that you will make a good recovery, even if it takes a lot of time and patience to get there. If you're able to walk and have full bowel/bladder control the tumour shouldn't have done too much damage at this point. As others have said, take a list of questions when you see your neurosurgeon and feel free to pick our brains here as well. We're not doctors but we have been there and come out the other side. Keep your chin up!

[jennn]

My surgery is scheduled for Wednesday. Based on your experiences, what should I expect for recovery?

Sent from my XT1080 using Tapatalk

[lw]

Hi Jennn,

The best advice I can offer is to be prepared for a long recovery. Try not to be disheartened if you're not able to do anything in the initial stages after the operation - chances are it won't be forever. Of course everybody's experience is different so I can only advise based on my own situation. Prior to my surgery my biggest concern was the pain but I actually woke up completely numb. I was unable to walk for quite a long time and, as I had no knowledge then of SCTs, I just assumed I'd be that way indefinitely. I wish somebody had explained just how long recovery can take. I never did completely recover, but if you saw me now in my 5 inch platforms you would never guess that I was paralysed a few years ago. I think the only thing you can really do is take each step at a time (pardon the pun) and don't be too hard on yourself. If you do have any pain or you're unsure about anything tell the hospital staff, or ask to speak to your surgeon. Also, pack some books and stuff to do to take in with you - I found this really helpful as I wasn't just sitting and thinking all day in my chair. Luckily my work mates were really good and were ringing/texting me all the time so I wasn't alone.

Good luck for tomorrow. Remember, you're in good hands.

Leah

[samuridude]

Recovery depends on too many variables, we are all different. I personally was paralyzed from my pecks down before and after surgery and given a 20% chance of walking again. I proved them wrong, but it took a lot of hard work and time. I still have many issues like pain, but it's much better then the alternative.

I prey for your good health.