Spinal Tumor Surgery at NIH

It's been awhile since I've been on here and my son's spinal tumor's are ready to be removed. He has multiple tumor's on his spine and they've grown slowly over the year's with a growth spurt in the last year.
The thoracic tumor need's to come out first it's already grown its max that we can't wait any longer. Then soon after that one on the cervical spine will need surgery.
We will be going to NIH in a few weeks for the first surgery.
I am interested to know from anyone that has had spinal surgeries, what to expect as far as recovery time and about any complication's or therapy after surgery. We will be flying from Hawaii and they told us to expect that he would be in ICU one night, getting up to walk the next day and in the hospital approx. 3 day's. We are looking to stay there possibly a week to 2 weeks after surgery and until the stitches are out and everything looks fine before attempting to fly back home,
Both my husband and son have vhl. My son had very traumatic and difficult surgeries (3) when he was 8 for a brain stem tumor, with complications and is very scared with anxieties and mood swing's. Has not been able to deal with stress well and is currently taking lorazepam for the anxieties and to help him sleep. He's has laser done for eye tumors last year and has other tumors they're watching in his spine and brain. My husband has a partial kidney left which has been transplanted in the front for easier access, has had a whipple surgery done in 2000, endolyphatic tumor surgery and is deaf from that ear among multiple brain surgeries.
Any information would be helpful.
Thank you,
Doreen

By ALB
Posted September 5, 2009 at 10:35 am
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Hi Doreen,

I don't have any advice for you but am having a similar operation at NIH in a few weeks as well. I have only had my brain stem worked on before. Thanks for posting and I hope we get some good replies on here. I'm trying to figure out how to schedule getting back to work.

My tumor for this surgery is at T2-T3 vertebrae. Message me directly on Inspire if you want to compare dates.

Best,
Amy

By lifeandhope
Posted September 5, 2009 at 1:57 pm
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I have had two spinal cord surgeries at NIH, both in the T11/T12 area. Both were very difficult surgeries; I was there 2-3 weeks for each. I had a lot of pain, and a lot of muscle and back pain that is still present years later. However, I have no loss of function and the NIH team is fantastic. Your son is in excellent hands. Please be encouraged that your son's surgical team is the very best.

On a different note, I am very sorry to hear of your son's problems with anxiety. VHL has created a lot of extreme anxiety for me (and for my Dad while he was alive) and that is one of the hardest aspects of living with VHL for me. I always feel like there is a gun pointed at my head....when will it go off again? I watched my Dad suffer and die from VHL this past year, I've suffered, my brother has suffered, and the anxiety is unbearable at times. I'm so nervous about when VHL will start to manifest in my beautiful little girls, or that I'll have another surgery and won't be able to take care of my daughters. I can empathize with your son. Tell him to hang in there and that he's not alone. You don't say how old he is, but it is a lot for a young man to deal with.

I'm interested in your husband's experience with the whipple. I had one a year ago and still have problems. How is he doing now? Does he have to take enzymes? Is he in pain still?

Bless your family,
Tara

By ohana4
Posted September 6, 2009 at 12:41 am
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Thank you for your replies and Tara I'm so sorry to hear about your dad.

My son is 21 and his last surgeries was when he was 8 for a brain stem tumor, that he had a lot of complication's with, causing him to have 2 more surgeries in 3 months. He will be having surgery on the T11 area in a couple of weeks.

My husband's whipple was done in 2000. He was really sick for about a year or more. In fact the doctor's here were just medicating him with A LOT of narcotic's and marinol just trying to keep him comfortable. The doctor even pulled me into his office and told me to prepare myself because he wasn't going to make it, there was nothing else they could do for him. He would suffer with pancreatitis type of pain's among other things and in and out of the hospital mostly in.

What they didn't realize was that he had something called a pseudoaneurysm and was bleeding slowly inside. They were also giving him coumadin on top of that because he had blood clots and they were afraid of them going to his lungs. Until he started hemmoraging and had to be medivaced to Oahu.

He is doing well now and he does take pancreas enzymes. Now he also has diabetes because he doesn't have part of the pancreas and has to take insulin. He doesn't work since that surgery in the year 2000 and is considered 100% dissability from working. Although he can still do everything he needs to on his own. He doesn't really have any pain now in that area.

Are you having any problem's with diabetes yet? My husband didn't until he went back to nih for a endolymphatic sac tumor and the doctor gave him steroids to see if any hearing would come back. That's when it all started, his blood sugar spiked into the 1000's and the doc's here couldn't believe he wasn't in a diabetic coma. Since then he has to try to keep it under control with insulin, exercise and diet.

Sorry, I feel like I wrote a book here... so I will stop here for now. I can email you direct if you would like to talk about it more or you can email me.

Amy, I will email you and we can see if we will be there around the same time.

Aloha, Doreen

By joyceg98
Posted September 6, 2009 at 10:20 am
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Aloha, Doreen. So very sorry to hear your husband's difficult journey. I do hope things will level out for him now, and that your son's surgery goes smoothly.

All best wishes,
Joyce

By Robin3
Posted September 7, 2009 at 4:27 am
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Doreen,
My husband has had 2 cord surgeries at NIH...the most recent in May of this year. The estimates of time in ICU and in patient is what we have experienced. We live in TX and we come home before the staples are ready to come out. They just give us a sterile staple remover and I take them out at home. Was not a fan of this at first, but it's really easy:). Dr. Lonser is an amazing surgeon. He told us in May that he's never had a patient leave paralyzed. So his track record is excellent. Joe's bowels and bladder were a little slow to wake up after his thoracic surgery, but within a few days all was well. The thoracic was also a more painful recovery due to the muscles they have to cut to get to that area.I will say Joe doesn't have any defits...he has some numb areas in his legs and on the left side of his abdomen. But he still works full time and enjoys all his hobbies...riding his motorcycle and fishing. The first 8 wks the patient has to refrain from any activity other than walking. That recovery period is critical and so important. I hope this info helps! Keep us posted! Robin Kadlecek

By ohana4
Posted September 7, 2009 at 5:11 pm
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Thank you Robin,

That was very helpful in giving us some idea's in what to expect. Although I know every surgery is different and each person's body may react differently also. It really help's.
The tumor in the T11 area is 1.5cm and extends about 23mm. Dr. Lonser said it's the same size as the spinal cord. There's no more room for it to grow.
So, its the thoracic spine surgery first.

I hope all is well with you and your family. I know they've got strong mom and mother taking care of them. I have admired you since I've met you through letter's on vhl, the first being when you were wondering about doing the dna test's for your boy's.

Take Care & Blessings,
Doreen

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