Tuesday, June 26, 2012

Working on it

Last week, I survived my spinal tap.  Monday was the lumbar puncture.  My pressure was normal (opening pressure: 7.2, ending pressure: 5.2).  So, we can eliminate the possibility of needing a shunt at this point.

During the lumbar puncture, they remove CSF from the spinal cord.  CSF is cranio-spinal fluid.  The samples have been analyzed to check for infection and signs of multiple sclerosis.  I'm still waiting on these results.

After the spinal tap, a small hole is left in the lining of the spinal cord. It normally closes on its own in the first 12 hours. For me, it never heals on its own, so it allows the fluid to leak out continuously, particularly when you are vertical. This causes low pressure around the brain, which causes a terrible headache and nausea whenever you sit up. 

A blood patch was performed on Wednesday.  The blood patch is an injection of your own blood into the area around the hole. The blood coagulates and encourages the hole to seal. Then, the lost fluid is replenished, and the pressure returns to normal. Luckily, this procedure was successful in sealing the hole. It does cause some trauma to the area, so I have some swelling and pain in my low back. I also have to avoid bending and straining for the first week, since the patch can break when it is still fresh.  So far, so good!

I will be having the CT scan and the DEXA scan performed in the next couple of weeks.

My symptoms in the past week have mainly been:
*Migraine for the last 3 days
*Erratic blood pressure
*Tachycardia, with occasional bradycardia
*Shortness of breath
*Pain in thoracic spine from the herniated disc.

I have been working on trying to get in better shape.  The symptoms have caused me to rest much more, which has caused me to become deconditioned, which only makes POTS symptoms worse.  So, we have started working on rebuilding my strength.  We've started by taking walks at the lake each day.  I sit in my wheelchair part of the time, and push the wheelchair (like a walker) some of the time.  The beach near our place has a large hill, where you can either take the stairs or the ramp.  So, we go up and down the ramp.  Today, I did a bit too much, so I am feeling terrible right now.  But I know it's important to get in shape if I want to feel better.  It's our free form of physical therapy.

I also did a short drive today.  Working hard at making progress.  But I'm still spending the majority of the day suffering from symptoms.  Each activity requires tremendous effort.  I am just glad to be out of bed some of the time, even if it feels like it makes me feel worse during the activity.  Overall, I hope I am getting stronger.  It will take some time.  It's only been 1 week of "physical therapy" so far.  Maybe in a month or two, I'll start to notice some symptom improvement.

The migraines continue to hinder so much of my activity, but I am trying to work through them.  I don't know if anything will reduce their frequency or severity.  I seem to have tried everything.

Here's the hill at the beach we've been climbing:


Wednesday, June 13, 2012

Dark Times

Life is an extraordinary challenge right now.  I can't stand to be inside my body.  I just feel like I need a break.  The intense pain is throughout my spine--cervical, upper thoracic, and lumbar.  During the bad times of day, when the pain increases, I also get overwhelmed with feelings of nausea and general sickness.  The only place I get relief is by spending time in bed.  Even that doesn't help at times.  Then, I have to use the pain meds.  My level of functioning is essentially zero.  It is just such a difficult time.  I have no idea what all of these tests are going to show.  Will they be able to find out what's wrong?  Will it be something they can fix?

I just don't know.  I've had to give up working for now, and I'm missing out on things I'd really like to be doing.  I really hope it can be helped.  I feel like I'm losing everything.

Sunday, June 10, 2012

Update for New York trip

Thursday and Friday night I began experiencing new symptoms where muscles spasms and twitches awoke me from a sound sleep. This new symptom has been quite alarming for me.

Our trip out to New York was from Thursday afternoon through Friday afternoon. The appointment with Dr. B was Friday morning. He looked at my MRI and x-ray scans and saw no major structural problems with the fusion. As a result, more testing needs to be done to determine the causes of my increasing symptoms. This testing includes CT scans, DEXA scan, and a type of lumber puncture.

The CT scans are for a more detailed look at my fusion. The DEXA scan is to check where my bone density is at, although I just finished two years of Forteo bone building treatment. Lastly, the lumber puncture is to rule out some other possibilities.

If the CT scan shows that the bone is strongly fused with the titanium, I will be prescribed intensive physical and manual therapy. If the bones around the fusion are too thin or not completely fused, I will need to continue Forteo treatment for osteopenia, with the possibility of fusion revision in the future. This course is contingent on the results of the DEXA scan.

The lumber puncture (LP) will be done to rule out some scarier possibilities. One possibility would be high CSF pressure. If this is the case, serial LP's will be performed to decrease pressure. If this is found to be helpful, a VP shunt will be considered. In addition, the spinal fluid that will be removed will be tested for infection or markers of MS. Dr. B has told me that he has several patients similar to me that have developed MS at about my age.

We went to the ER yesterday for treatment of the muscle spasms, which began affecting my speech (i.e., halting, stuttering). I was prescribed Valium to get me through the next few days.

Currently I am having anxiety and fear over the possibilities presented, especially MS. The spastic movements have intensified this fear.

Thank you to everyone who has been so supportive in this difficult time. 

Monday, June 4, 2012


I got my scans done today.  MRI of brain, MRI of cervical spine, MRI or lumbar spine, x-rays of cervical spine.  It was a long day.  I don't have the skill to interpret the scans.  We'll leave that to Dr. B.  Cannot wait to see what he has to say.

Going to New York

Today, I'm going to get MRI's and x-rays at my local hospital.  On Thursday, G and I are going to New York for a Friday morning appointment with Dr. B.  It's been really stressful making plans for the trip at the last minute.  But everything is set, and we can't wait to see what he has to say.

My symptoms have been pretty severe.  They are worst when I am vertical.  I have to wear my collar 24 hours/day, even when I sleep, which is really uncomfortable.

I've got pretty high levels of pain right now.  Trouble concentrating.  Pretty out of it.  Really uncomfortable.  It's a really hard time.  If I have to have surgery again, I hope it can be soon, because everything is falling apart.