If you are here
... its because you've been invited.
As many of you know, Terry has been having issues with his walking and balance for a long time now. It all started back in 2011 after his car wreck. We were first told it was 'bone spurs' ... turns out that even though the bone spurs were there, surgical removal of them would not change his conditions.
Guess I should start from the beginning ...
February 2011 ~ Terry t-boned a woman who made a left turn in front of him. He received injuries to his shoulder. While seeing Dr Mortazavi, Terry mentioned he had been having issues with his hip (soreness) off and on since the spring of 2010. Terry really thought it was bursitis. Dr. M told us he didn't think it was bursitis but yet something with his lower spine. Why he thought this we did not know.
June ~ After finishing treatment of therapy for the car accident, Terry went for an MRI of his lower back. He also had a nerve conduction test done on both hands, and was told he had carpel tunnel syndrome.
July ~ When we went for the results we were told that he had 2 bone spurs located on the L4 and L5 of the lumbar (lower) spine. At that time we opted to try the suggestion of a spinal block in the sacral area to alleviate the pain.
September ~ The week before we left for the beach Terry had the spinal block injection. It was an outpatient procedure and he went home hoping this would help. By the time we returned home from Florida, we knew that it didn't help.
October ~ We had an appointment with Dr M not long after coming home from vacation ... After a very crazy meeting it was decided he would have surgery to remove the bone spurs ASAP... On the 12th we got the call that the surgery would be Monday the 17th.
October 17 and the week thereafter ~ Terry's first surgery, known as a 'Laminectomy' ... Everything appeared to have went well and he was in the hospital for about 4 days. The day after he came home he started having terrible headaches. He would turn sheet white upon standing and start sweating. He would get extremely sick to his stomach. Finally on Monday I called the doctor. The surgeon said it was his blood pressure. So I called his regular doctor, Dr Tarpley. She saw him on Tues morning. She looked at Terry one time and said "I am pretty sure he has a spinal fluid leak'. We were not able to get in to see the surgeon until the next day. He removed the gauze and looked at the incision and said ' yes he definitely has a fluid leak'. Terry was on bed rest for 4 days. The headaches stopped and we thought all was well.
November ~ When he went back for his post operation check up, Dr. M wanted to have an MRI done of the lower spine to make sure the fluid was gone. Sadly, it wasn't. Apparently the tear was bigger than thought and he had a pocket of spinal fluid that had collected where the bone spurs were removed. It was at this time the doctor sent us to another neurosurgeon, Dr Javed.
December ~ We saw Dr. Javed with the hopes that Terry wouldn't have to have another surgery. Opon Dr. Javed's advice, we opted to wait a month or two and see if the fluid was still there and if it was the same size or had gotten any bigger or smaller.
February/March 2011 ~ Terry went in and saw Dr J again. The week before, he had done another MRI and it showed there was no change in the fluid and that we would have to eventually have the surgery. Terry was still having walking and mobility issues in his right leg and arm, plus the lower back pain. Terry had told the doctor that he really wanted to wait until the summer to have the other surgery. Our kids would be out of school and it would make things a bit easier.
April 14 ~ While the kids and I were all away for the day, Mr. Terry decided that the grass really needed to be cut and in the process he flipped the lawnmower over- breaking the L1 vertabrae in his back. We spent 9.5 hours in the ER trauma center at Kennestone before he was transferred to a room on the trauma floor. We saw Dr Lin the next morning and since Dr J was away it was decided Dr Lin would do a surgery called 'Kyphoplasty'. This surgery WAS nescessary.
April 16 ~ Terry had this (second) surgery, which was successful, and was sent home that afternoon.
April 18th ~ Dr J called and said that he was worried the 'lawnmower accident' might have done more damage to the spinal fluid leak and that we needed to go ahead with the surgery to remove all the fluid. Surgery was set up for the 24th. Unfortunately, the surgery had to be rescheduled twice due to circumstances beyond our control and it was finally set for May 8th.
May 8th ~ Surgery went well and he spent a few days in the hospital and came home. He showed some signs of improvement ... pain was less in the back but he still had weakness in his right leg and hand.
May ~ We went back for post op check and Dr J said to Terry ... 'Mr Tidwell, what is wrong with your hands'?' Terry responded that Dr M had told him he had carpel tunnel. Dr J said ... 'What I am looking at is not from carpel tunnel syndrome' and stated that he was going to send him to a muscular neurologist. That doctors name was Dr Hormes.
June ~ We met Dr Hormes in early June and told him everything that Terry had been thru. Dr Hormes told us he thought he knew what was wrong but we would have to have an EMG also know as a Electromyogram ... The test was set up for June 13th.
After 2 years of problems with Terry's hips, legs, back and everything in between ... Dr Hormes finally found out what was wrong. It is the day that 'will change our lives forever' ...
On June 13, 2012 after extensive nerve tests Dr Hormes gave us the diagnosis we had been hoping it wasnt.
Terry has ALS ... Amyotrophic Lateral Sclerosis ... also know as Lou Gehrig's disease.
There is NO cure for ALS.
Dr Hormes told Terry and I that he wanted us to get a second opinion. He then referred us to Dr. Jonathan Glass, who is the Professor of the ALS Center at Emory University. Sadly, Dr. Glass did confirm that it is ALS. Dr. Hormes & Dr. Glass both believe that the original surgery was not needed to help with his hip, back & leg issues, indicating that all the problems he had been experiencing were the beginning symptoms of ALS.
Terry has started taking the only medicine that has been approved for patients with ALS and while it doesn't stop the disease, it has been shown in group studies to slow the progression of it. I will continue to hope and pray that this will give him extra time with the family that loves him so much, and likewise.
I ask that each of you pray for Terry, the kids and myself as we go thru this difficult time.
Please feel free to check out this >> ALS << website for a lot of information about ALS ... I will continue to post about how things are going as we take each new step on this difficult road...
Love & Hugs,
Allyson & Terry
Logan, Baillie & Jordan
As many of you know, Terry has been having issues with his walking and balance for a long time now. It all started back in 2011 after his car wreck. We were first told it was 'bone spurs' ... turns out that even though the bone spurs were there, surgical removal of them would not change his conditions.
Guess I should start from the beginning ...
February 2011 ~ Terry t-boned a woman who made a left turn in front of him. He received injuries to his shoulder. While seeing Dr Mortazavi, Terry mentioned he had been having issues with his hip (soreness) off and on since the spring of 2010. Terry really thought it was bursitis. Dr. M told us he didn't think it was bursitis but yet something with his lower spine. Why he thought this we did not know.
June ~ After finishing treatment of therapy for the car accident, Terry went for an MRI of his lower back. He also had a nerve conduction test done on both hands, and was told he had carpel tunnel syndrome.
July ~ When we went for the results we were told that he had 2 bone spurs located on the L4 and L5 of the lumbar (lower) spine. At that time we opted to try the suggestion of a spinal block in the sacral area to alleviate the pain.
September ~ The week before we left for the beach Terry had the spinal block injection. It was an outpatient procedure and he went home hoping this would help. By the time we returned home from Florida, we knew that it didn't help.
October ~ We had an appointment with Dr M not long after coming home from vacation ... After a very crazy meeting it was decided he would have surgery to remove the bone spurs ASAP... On the 12th we got the call that the surgery would be Monday the 17th.
October 17 and the week thereafter ~ Terry's first surgery, known as a 'Laminectomy' ... Everything appeared to have went well and he was in the hospital for about 4 days. The day after he came home he started having terrible headaches. He would turn sheet white upon standing and start sweating. He would get extremely sick to his stomach. Finally on Monday I called the doctor. The surgeon said it was his blood pressure. So I called his regular doctor, Dr Tarpley. She saw him on Tues morning. She looked at Terry one time and said "I am pretty sure he has a spinal fluid leak'. We were not able to get in to see the surgeon until the next day. He removed the gauze and looked at the incision and said ' yes he definitely has a fluid leak'. Terry was on bed rest for 4 days. The headaches stopped and we thought all was well.
November ~ When he went back for his post operation check up, Dr. M wanted to have an MRI done of the lower spine to make sure the fluid was gone. Sadly, it wasn't. Apparently the tear was bigger than thought and he had a pocket of spinal fluid that had collected where the bone spurs were removed. It was at this time the doctor sent us to another neurosurgeon, Dr Javed.
December ~ We saw Dr. Javed with the hopes that Terry wouldn't have to have another surgery. Opon Dr. Javed's advice, we opted to wait a month or two and see if the fluid was still there and if it was the same size or had gotten any bigger or smaller.
February/March 2011 ~ Terry went in and saw Dr J again. The week before, he had done another MRI and it showed there was no change in the fluid and that we would have to eventually have the surgery. Terry was still having walking and mobility issues in his right leg and arm, plus the lower back pain. Terry had told the doctor that he really wanted to wait until the summer to have the other surgery. Our kids would be out of school and it would make things a bit easier.
April 14 ~ While the kids and I were all away for the day, Mr. Terry decided that the grass really needed to be cut and in the process he flipped the lawnmower over- breaking the L1 vertabrae in his back. We spent 9.5 hours in the ER trauma center at Kennestone before he was transferred to a room on the trauma floor. We saw Dr Lin the next morning and since Dr J was away it was decided Dr Lin would do a surgery called 'Kyphoplasty'. This surgery WAS nescessary.
April 16 ~ Terry had this (second) surgery, which was successful, and was sent home that afternoon.
April 18th ~ Dr J called and said that he was worried the 'lawnmower accident' might have done more damage to the spinal fluid leak and that we needed to go ahead with the surgery to remove all the fluid. Surgery was set up for the 24th. Unfortunately, the surgery had to be rescheduled twice due to circumstances beyond our control and it was finally set for May 8th.
May 8th ~ Surgery went well and he spent a few days in the hospital and came home. He showed some signs of improvement ... pain was less in the back but he still had weakness in his right leg and hand.
May ~ We went back for post op check and Dr J said to Terry ... 'Mr Tidwell, what is wrong with your hands'?' Terry responded that Dr M had told him he had carpel tunnel. Dr J said ... 'What I am looking at is not from carpel tunnel syndrome' and stated that he was going to send him to a muscular neurologist. That doctors name was Dr Hormes.
June ~ We met Dr Hormes in early June and told him everything that Terry had been thru. Dr Hormes told us he thought he knew what was wrong but we would have to have an EMG also know as a Electromyogram ... The test was set up for June 13th.
After 2 years of problems with Terry's hips, legs, back and everything in between ... Dr Hormes finally found out what was wrong. It is the day that 'will change our lives forever' ...
On June 13, 2012 after extensive nerve tests Dr Hormes gave us the diagnosis we had been hoping it wasnt.
Terry has ALS ... Amyotrophic Lateral Sclerosis ... also know as Lou Gehrig's disease.
There is NO cure for ALS.
Dr Hormes told Terry and I that he wanted us to get a second opinion. He then referred us to Dr. Jonathan Glass, who is the Professor of the ALS Center at Emory University. Sadly, Dr. Glass did confirm that it is ALS. Dr. Hormes & Dr. Glass both believe that the original surgery was not needed to help with his hip, back & leg issues, indicating that all the problems he had been experiencing were the beginning symptoms of ALS.
Terry has started taking the only medicine that has been approved for patients with ALS and while it doesn't stop the disease, it has been shown in group studies to slow the progression of it. I will continue to hope and pray that this will give him extra time with the family that loves him so much, and likewise.
I ask that each of you pray for Terry, the kids and myself as we go thru this difficult time.
Please feel free to check out this >> ALS << website for a lot of information about ALS ... I will continue to post about how things are going as we take each new step on this difficult road...
Love & Hugs,
Allyson & Terry
Logan, Baillie & Jordan
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