Arachnoiditis Treatment

Day 1:

Geno was so excited to be getting the treatments within the time frame for optimal results. His first appointment wasn't until 4pm on Monday, so we were able to take it easy and pack up to leave around 1:30 for a 3pm check-in at the hotel. We were staying at the Drury across the street from the office. It was a very nice hotel, and they served a free hot breakfast and dinner that we took advantage of to save money.

When the treatment started, Geno's pain level was at an 8. While he was receiving the IV treatment, Dr. Aldrete would ask him to move his feet, knees, hips and then ask about his pain level. By the end of the first treatment, his pain level was down to a 2. His blood pressure was pretty high at the beginning of the treatment which was attributed to the amount of constant pain he had been in. The high doses of steroids caused some redness during the treatment. Before going home, they would have him sit up and test his blood pressure to see if he was ok to leave. He was having pain in his tailbone, which is something he realized after having the surgery. There were times when he would stand up or move a certain way that he would discribe as feeling like his tailbone was being ripped out of his skin. Day 2:

Geno had a hard time falling asleep the first night, but he seemed to feel rested and not too tired. His pain level had remained at a 2 since the first treatment. Dr. Aldrete changed the treatment based on the experience Geno had the first day. About 10 minutes into the treatment, Dr. Aldrete asked Geno to move his feet, knees, hips and he felt no pain! He had not been pain free for weeks, so this was wonderful! His blood pressure was still elevated from the steroids, but not as high as the day before. The pain in his tailbone was still there when he stood up. I took this picture during the treatment to show him how his eyelids were red during the treatment. Day 3:

Geno remained pain free (except for his tailbone) after the second treatment. He was not able to fall asleep again the second night. I tried to stay up and be supportive, but I just couldn't stay awake! He finally fell asleep at 5:30am, and this time the treatment was to start at 10am! Since Dr. Aldrete would change the meds according to Geno's reports, the treatment today had a little extra to help him sleep. Dr. Aldrete also told him that they can do some local injections in specific areas where there is pain to see if that will help. After doing a physical exam to try to pinpoint the spot of pain, Dr. Aldrete noticed a very distinct physical mark that shows Geno has spina bifida occulta! He pulled out his latest book on Arachnoiditis and showed me a photo of a lady with the same physical mark. For years, I have been telling Geno that he has the "cutest little triangle" mark and had no idea that it was actually a congenital defect! People who have spina bifida occulta should NEVER have back surgery as they ALWAYS have negative results. How both the spinal surgeon and neurosurgeon missed the obvious physical mark is beyond me! Geno got some local injections to try to help and we went back to the hotel after the treatment. About 30 minutes later, Geno was able to take a nap for a couple of hours. We treated ourselves out to a movie that night. Day 4:

Since Geno had had so much trouble sleeping, the cocktail on Thursday knocked him out cold within 10 minutes! He slept through the entire treatment (except when Dr. Aldrete would shake him to ask the normal questions). He had just enough energy to get up, dressed, back to the hotel, undressed and into the bed for a good 4 hour nap! It was nice that he finally got some sleep! He woke up in time to go to dinner at the hotel and then he was craving donuts (see previous post). It was a very relaxing day for both of us. I am so glad that I had the forethought to get a suite so he would be able to sleep in a seperate bedroom and I wouldn't bother him watching tv or doing whatever. Day 5:

Geno's face was pretty red during this treatment! He didn't fall asleep like the day before, and his blood pressure was actually the lowest it had been in quite some time. He still had the pain in his tailbone, so Dr. Aldrete did another set of local injections a little further down. After this treatment, we headed home. Geno was very happy with the overall results and felt that it was worth every penny. It was so nice to see him not in constant pain! He still winced every time he stood up or sat down or leaned his head forward (which he felt in his tailbone), but that was so much better than the constant pain.I just wanted to add a little note:

Geno has become involved with several message boards and online groups of people with arachnoiditis. Of course, everyone has their personal experiences and opinions, and I respect that. Some people have contacted Geno about his treatment and Dr. Aldrete. We had a very positive experience with Dr. Aldrete. He sat with Geno personally through every treatment and answered every question either of us had. On Thursday while Geno was sleeping, I asked more about the spina bifida occulta. Dr. Aldrete got back out all three of the MRIs and tried to see if there was an image showing it. Unfortunately, none of the three showed images low enough to see the deformity. We have Dr. Aldrete and his assistant's home, cell, and office numbers. Geno has emailed him with issues and updates and Dr. Aldrete ALWAYS answers the emails within a short amount of time and has even called twice to clarify the symptoms and made changes in the medications. He is very personally involved with his patients and is willing to chat with us about anything we are concerned about and any questions we have. I do realize that doctors who testify against other doctors get a bad name in the medical field, but isn't it nice that there is a doctor who is a patient advocate?