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.
Wednesday, June 13, 2012
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.
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
Images
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.
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.
Friday, May 25, 2012
Suddenly Sick Again
So, I know I've never really been well. But this week has been dramatically worse. Suddenly, I am as sick as I was at my very worst point. I was in the ER on Wednesday, but they couldn't help. I had to come down to stay at my mom's house, and I haven't even been able to change clothes since I got here. I am so severely limited.
I sent an urgent email to Dr. B yesterday. Here's what I wrote:
-------------------------------------------------------------------------------------------
Hi Dr. B,
I'm sorry to bother you. I know you're very busy.
This is Carolyn [Last Name]. My last surgery was a CCF-R in August 2010. Since January, I've had an increase in migraines, digestive problems, and swallowing problems.
This week, I have had a sudden decline. I'm having double vision, loss of balance, nausea, loss of appetite, dilated pupils, extreme tachycardia, vision in and out of focus, twitching, weakness, narcolepsy, falling when walking, and weakened voice. I realized that wearing my old Aspen collar reduces the intense migraines/facial pain and nausea. I've had 2 recent blackouts. Most of these symptoms have become so intense so quickly that I am worried something is wrong. I'm suddenly having trouble getting out of bed, after being active for over a year.
I feel that I need help right a.s.a.p.
Thanks.
Carolyn
-------------------------------------------------------------------------------------------------
I received a response this morning at 4:58 a.m. Dr. B wrote that I need a follow-up appointment with him. Then he listed x-rays and mri's that I need to have done. The nurse and the scheduling person will be contacting me soon.
I know that this will need to be dealt with in the immediate future. It is so dramatically different than even my worst days within the last year. It's not just bad migraines and bad POTS. It's a massive change in my neurological state. My ability to eat, talk, write, and walk have all be severely impacted.
I'll update when I know where the tests will be done and when I'm going to NY. I honestly hope that it will be very, very soon. I can't believe my life has reverted to this so quickly. I'm anxious to get something done about it right away.
I sent an urgent email to Dr. B yesterday. Here's what I wrote:
-------------------------------------------------------------------------------------------
Hi Dr. B,
I'm sorry to bother you. I know you're very busy.
This is Carolyn [Last Name]. My last surgery was a CCF-R in August 2010. Since January, I've had an increase in migraines, digestive problems, and swallowing problems.
This week, I have had a sudden decline. I'm having double vision, loss of balance, nausea, loss of appetite, dilated pupils, extreme tachycardia, vision in and out of focus, twitching, weakness, narcolepsy, falling when walking, and weakened voice. I realized that wearing my old Aspen collar reduces the intense migraines/facial pain and nausea. I've had 2 recent blackouts. Most of these symptoms have become so intense so quickly that I am worried something is wrong. I'm suddenly having trouble getting out of bed, after being active for over a year.
I feel that I need help right a.s.a.p.
Thanks.
Carolyn
-------------------------------------------------------------------------------------------------
I received a response this morning at 4:58 a.m. Dr. B wrote that I need a follow-up appointment with him. Then he listed x-rays and mri's that I need to have done. The nurse and the scheduling person will be contacting me soon.
I know that this will need to be dealt with in the immediate future. It is so dramatically different than even my worst days within the last year. It's not just bad migraines and bad POTS. It's a massive change in my neurological state. My ability to eat, talk, write, and walk have all be severely impacted.
I'll update when I know where the tests will be done and when I'm going to NY. I honestly hope that it will be very, very soon. I can't believe my life has reverted to this so quickly. I'm anxious to get something done about it right away.
Wednesday, May 16, 2012
May update
Well, I have a few things going on this month.
First, on May 6, I came down with a fever of 104*. This is highly unusual for me, because my normal body temperature is on the low side, thanks to my POTS. I never get a fever, whatever the infection, virus, etc. I never get fevers. Since May 6, I've had a temperature around 100*-101*every day. I don't seem to have symptoms, outside of a mild sore throat and a hoarse voice at the end of the day. I'm thinking I'll have to see a doctor, reluctantly, on Friday, if I still have a fever. The only thing I can think of is a second recurrence of mono. But I would assume that would come with a worse sore throat, and certainly some swollen lymph nodes. I feel dumb going to the doctor, when I feel like he won't find anything wrong with me... But the fever is super unusual for me, and making me super tired and achy.
Second, migraines are taking over my life. I have now had a migraine on these days:
May 8
May 9
May 11
May 12
May 13
May 15
May 16
I have been going to the headache clinic since January 6. We are still gradually raising the dose of my migraine prevention medication, Lamictal. They have been very cautious with the increase in the dosing. I'm still at a relatively low dose after 4+ months. I wish they would increase it faster to see if it helps in reducing frequency of migraines.
The other thing that seems to help is treating the migraine first thing in the morning, before breakfast, even if it's just a twinge of pain. This prevents it from becoming a full-blown migraine. The rescue medication I use, as soon as I think I am getting a migraine, has switched a couple of times. I've settled on Maxalt, because the insurance company will allow the highest number of pills per month of this medication. This allows me to treat as soon as I detect a migraine, which usually prevents it from getting worse and taking over my whole day.
Finally, I am still having ongoing digestive issues, although I've found a few things that have helped a bit. One is Magnesium supplementation, which helps with constipation. The second is Digestive Advantage probiotics. I'm still experimenting with these. I'm also experimenting with digestive enzymes and dietary restrictions. The constipation has resolved, but I still have frequent bloating and pain. My biggest culprits are dairy and vegetables. I've removed dairy (almond milk is fantastic!). But I can't remove vegetables without seriously impacting my health. I also skip red meat and fatty foods, but I've been doing this for years, so I don't think of it as a restriction.
So, there's still a lot going on. Just struggling through it, as always. Some days I manage a little better than others. It is often a monumental challenge to get dressed and teach piano lessons for a few hours each day, with a smile on my face and mock energy.
First, on May 6, I came down with a fever of 104*. This is highly unusual for me, because my normal body temperature is on the low side, thanks to my POTS. I never get a fever, whatever the infection, virus, etc. I never get fevers. Since May 6, I've had a temperature around 100*-101*every day. I don't seem to have symptoms, outside of a mild sore throat and a hoarse voice at the end of the day. I'm thinking I'll have to see a doctor, reluctantly, on Friday, if I still have a fever. The only thing I can think of is a second recurrence of mono. But I would assume that would come with a worse sore throat, and certainly some swollen lymph nodes. I feel dumb going to the doctor, when I feel like he won't find anything wrong with me... But the fever is super unusual for me, and making me super tired and achy.
Second, migraines are taking over my life. I have now had a migraine on these days:
May 8
May 9
May 11
May 12
May 13
May 15
May 16
I have been going to the headache clinic since January 6. We are still gradually raising the dose of my migraine prevention medication, Lamictal. They have been very cautious with the increase in the dosing. I'm still at a relatively low dose after 4+ months. I wish they would increase it faster to see if it helps in reducing frequency of migraines.
The other thing that seems to help is treating the migraine first thing in the morning, before breakfast, even if it's just a twinge of pain. This prevents it from becoming a full-blown migraine. The rescue medication I use, as soon as I think I am getting a migraine, has switched a couple of times. I've settled on Maxalt, because the insurance company will allow the highest number of pills per month of this medication. This allows me to treat as soon as I detect a migraine, which usually prevents it from getting worse and taking over my whole day.
Finally, I am still having ongoing digestive issues, although I've found a few things that have helped a bit. One is Magnesium supplementation, which helps with constipation. The second is Digestive Advantage probiotics. I'm still experimenting with these. I'm also experimenting with digestive enzymes and dietary restrictions. The constipation has resolved, but I still have frequent bloating and pain. My biggest culprits are dairy and vegetables. I've removed dairy (almond milk is fantastic!). But I can't remove vegetables without seriously impacting my health. I also skip red meat and fatty foods, but I've been doing this for years, so I don't think of it as a restriction.
So, there's still a lot going on. Just struggling through it, as always. Some days I manage a little better than others. It is often a monumental challenge to get dressed and teach piano lessons for a few hours each day, with a smile on my face and mock energy.
Thursday, April 12, 2012
Today is a bad day.
Today is a bad day for a few reasons. I came down with a cold yesterday, and any type of illness makes all my symptoms worse. I had tachycardia during the night last night while I was trying to sleep. Very unusual for me to have while lying down. I got a migraine yesterday and it has continued through all day today. I also developed an intestinal obstruction yesterday...second one in a month. So, I knew this time I had to take a stimulant laxative if I wanted to avoid the hospital. They would do the same thing there. It worked, but of course it worked too well, so I'm in a lot of pain today. So my head pain level is about an 8 and my abdominal pain level is about a 7. I still have a cold, but it mostly seems to have messed up my POTS.
I still taught my piano lessons today. It was especially hard to make it through, but I'm still alive and no one quit, so I guess I did well enough.
Now that I'm done teaching, I'm resting with an ice pack on my head and a heating pad on my stomach. No relief yet.
I think I have confirmed that a small amount of dairy is what caused my obstruction. I just used a greek yogurt dip with my carrots yesterday. But that small amount seems to be the cause of my problem, as it's the only thing that changed. If I can be stricter about my dairy-free diet, maybe I can avoid this in the future.
I still taught my piano lessons today. It was especially hard to make it through, but I'm still alive and no one quit, so I guess I did well enough.
Now that I'm done teaching, I'm resting with an ice pack on my head and a heating pad on my stomach. No relief yet.
I think I have confirmed that a small amount of dairy is what caused my obstruction. I just used a greek yogurt dip with my carrots yesterday. But that small amount seems to be the cause of my problem, as it's the only thing that changed. If I can be stricter about my dairy-free diet, maybe I can avoid this in the future.
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