On Wednesday we went back to Cincinnati to meet with Dr. Tew again. On the way up, I stopped at the Mayfield Imaging Center in Northern Kentucky and had a MRI of my cervical and thoracic spine. It was extremely hard on my back to lay there flat for so long and by the end of the 45 minutes I was almost in tears. For the first time ever, too, I felt claustrophobic and had to keep my eyes closed so that I wouldn't freak out.
Dr. Tew reported that there is no syrinx on my spine, which was kind of a surprise since so many of my symptoms are back related. I kind of hoped that there was because draining the cyst with a shunt seemed like a more straightforward procedure than the others.
He did report hypermobility thanks to me cerviocranial instability. Sometimes, the symptoms of CCI and Chiari can mimic one another so there was a chance that many of my symptoms were actually related to my CCI. However, he thinks that the slippage of my vertebrae is so minimal that it's not really causing my issues. Therefore, the malformation is most likely the culprit.
I know this sounds confusing, but EDS, CCI, Chiari, Syringomyelia, and Tethered Cord Syndrome are all connected and in some instances have identical symptoms. It can be hard to know what is causing what.
We will NOT be doing the fusion part of the surgery. We will be removing the C1 and possibly C2 vertebrae, doing the laminectomy, and putting on the duraplaster. He won't be harvesting my own tissue, which concerns me a little bit, but will be using bovine tissue. Sam is happy that I will now be part cow.
The surgery date is set for May 29th. I will be in the hospital for about 4-5 days and that means we'll have to stay in a hotel for that long. Or rather, Pete will. I'll be in the hospital, of course.
I am very nervous about this surgery. It's incredibly risky with no guarantees. It might not even help my symptoms. Generally, it's done to stop things from getting worse with symptom relief kind of being a by-product of that. A lot of people have noticed a reduction of symptoms but others have not.
A lot of people have also died having this surgery. I am scrubbing the house down before I have it, in an attempt to try to sterilize it. A friend asked if she could bring her kids to the hospital to see me and I said no. I know that sounds mean, but they are always sick and the last thing I want is them to be bringing an infection into the ICU. Most of the deaths have occurred post-surgery and have been due to infections like bacterial meningitis.
I know that every surgery has risks, but the risks that are specific to this surgery are scary as hell. They include, but are not limited to:
- a CSF leak
- respiratory failure
- bacterial meningitis
- nerve damage
- permanent brain damage
In some cases, the duraplaster hasn't held and the brain has fallen through the hole. Um, yikes!
Because of the EDS, my recovery will be trickier. I don't heal as quickly and pain medicine affects me strangely. My past epidurals might as well have been Kool Aid.
The list of things I can't do after the surgery is kind of crazy, too. Those would be:
- no straining
- no excessive coughing
- no bending over
- non unloading the dishwasher or washing machine
- no picking anything up over 5 pounds
- no driving
I have this image of coughing and having my brain fall out the back of my head.
Within 6 weeks I should start coming off the heavy pain medications. Recovery (full) can take up to a year or longer. I don't when I'll ever "feel better." Or if. That's a scary thought, too.
At this point, I'm really just looking forward to getting it over with.
Dr. Tew reported that there is no syrinx on my spine, which was kind of a surprise since so many of my symptoms are back related. I kind of hoped that there was because draining the cyst with a shunt seemed like a more straightforward procedure than the others.
He did report hypermobility thanks to me cerviocranial instability. Sometimes, the symptoms of CCI and Chiari can mimic one another so there was a chance that many of my symptoms were actually related to my CCI. However, he thinks that the slippage of my vertebrae is so minimal that it's not really causing my issues. Therefore, the malformation is most likely the culprit.
I know this sounds confusing, but EDS, CCI, Chiari, Syringomyelia, and Tethered Cord Syndrome are all connected and in some instances have identical symptoms. It can be hard to know what is causing what.
We will NOT be doing the fusion part of the surgery. We will be removing the C1 and possibly C2 vertebrae, doing the laminectomy, and putting on the duraplaster. He won't be harvesting my own tissue, which concerns me a little bit, but will be using bovine tissue. Sam is happy that I will now be part cow.
The surgery date is set for May 29th. I will be in the hospital for about 4-5 days and that means we'll have to stay in a hotel for that long. Or rather, Pete will. I'll be in the hospital, of course.
I am very nervous about this surgery. It's incredibly risky with no guarantees. It might not even help my symptoms. Generally, it's done to stop things from getting worse with symptom relief kind of being a by-product of that. A lot of people have noticed a reduction of symptoms but others have not.
A lot of people have also died having this surgery. I am scrubbing the house down before I have it, in an attempt to try to sterilize it. A friend asked if she could bring her kids to the hospital to see me and I said no. I know that sounds mean, but they are always sick and the last thing I want is them to be bringing an infection into the ICU. Most of the deaths have occurred post-surgery and have been due to infections like bacterial meningitis.
I know that every surgery has risks, but the risks that are specific to this surgery are scary as hell. They include, but are not limited to:
- a CSF leak
- respiratory failure
- bacterial meningitis
- nerve damage
- permanent brain damage
In some cases, the duraplaster hasn't held and the brain has fallen through the hole. Um, yikes!
Because of the EDS, my recovery will be trickier. I don't heal as quickly and pain medicine affects me strangely. My past epidurals might as well have been Kool Aid.
The list of things I can't do after the surgery is kind of crazy, too. Those would be:
- no straining
- no excessive coughing
- no bending over
- non unloading the dishwasher or washing machine
- no picking anything up over 5 pounds
- no driving
I have this image of coughing and having my brain fall out the back of my head.
Within 6 weeks I should start coming off the heavy pain medications. Recovery (full) can take up to a year or longer. I don't when I'll ever "feel better." Or if. That's a scary thought, too.
At this point, I'm really just looking forward to getting it over with.
Im so sorry Rebecca, its crazy. Its so horrible is enough with loosing a child and now this. I'm the oldest of 4 sisters and I tell them now that life is so hard is completely unfair. And Im sorry for your husband. Jared says that besides seeing our baby die, seeing me in so much pain is the worse. But you know what we are very much loved. Kira
ReplyDeleteIf it weren't for my husband I don't know where I'd be, that's for sure. I do feel like life keeps throwing us curveballs. We're ready for it to start letting up a little bit! We're very tired...
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