Rehab

As mentioned in the previous post, I was moved to Acute Rehab, on the 9th floor, the afternoon of August 30th, 2006.

I was measured for a corset (customized back brace) and was instructed not to get out of bed until I received the corset. Of course, this meant I had to use a bedside commode since the Foley had already been taken out. No need to worry about BM's, I didn't have one until the day I was discharged.

There was now a whole new set of doctors, I was even assigned a Pain Management (PM) doctor. The doctors were absolutely wonderful and, with the exception of one nurse, the nursing and physical therapy (PT) staff was very attentive and helpful. This was totally different from the horror stories I had heard, or read about, from people who had been previously hospitalized at Palomar. It's a *great* hospital and, overall, I had no complaints.

I spent labor day in rehab. My family (husband and kids) visited everyday, and once I could drink and eat, they started bringing my favorite Starbucks beverage (caramel machiatto).

Rehab was a nightmare and I had PT 3 times a day. After each session, I had to get an injection (in the IV) of Demerol because I would have burning, radiating pain. Actually, whenever the pain meds, (mostly Neurontin, Oxycontin, Tramadol, Percocet, Lidoderm patches and Flexiril), didn't relieve the pain, I was told to request an injection from any nurse and if I didn't get one I was to report it to the PM doc immediately.

I have an extremely high tolerance for pain meds and a very low tolerance to pain. Did I mention that my mom was told this information when I was 8, or so, years old? I was scheduled for surgery so I had been given the medication to knock me out. Instead of going to sleep, I was in the hall (on a gurney outside the OR) talking to everyone who passed by. I never went to sleep and surgery had to be re-scheduled for the next day. I was obviously given more meds the next day, then I had surgery. I have an entire history of episodes like this one.

Anyway, back to rehab. After 8 days in Acute Rehab, I was released to go home with a walker and a script for a hip kit (reacher and tools to help with putting on clothing and shoes), elastic shoe laces, shower chair and a raised toilet. I also had in-home therapy for 6 weeks and out-patient therapy for 24 weeks. I was still using the corset, per doctor's orders and on all the medication I went home with.

Once all the therapy ended, I was only allowed Oxycontin, Tramadol, Lidoderm patches and Percocet. I could have still taken the Neurontin and Flexiril but I started having severe side effects from both. At some point during the out-patient therapy, I realized that a standard walker wasn't enough because my legs hurt so bad when walking and I would get "drop down" tired, extremely fast. I purchased a rollator (walker w/a seat and a basket) and it was helpful but it took a really long time to get through the store because of all the breaks I had to take due to the pain.

So much for rehab. I still couldn't walk without assistance, and the assistance wasn't all that helpful and caused way too much pain. Not to mention all the falls I had, one caused a fractured ankle and multiple bruises. The pain continued to get worse until it became completely unmanageable.

Dr. Mc was very sympathetic, helpful and prescribed any treatment that he thought would be helpful. He also has an outstanding bedside manner. He's not an expert in the treatment of SM, but in my book, he has done better than any doctor on my team and has been with me, during my struggle, since the beginning. He has told me from the beginning that my problems were all neurological and I believed him. Let me say that a syrinx will and can cause numerous neurological problems. I have several links on SM and on some of the symptoms I have, but I'm not sure how current the information is. However, it was current at one time. LOL

Due to my extensive research, I knew all the neurological dysfunction stemmed from the syrinx that invaded my spine.

• Jan. '07, I was advised to apply for SSDI.
• May '07 (day after Mother's Day), I was in a wheelchair (w/c).
• June '07 I was approved (after appeal) for SSDI, my last day of work was Aug. 28th, 2006.
• July '07, the pain had gotten so extreme that I was getting injections of either Torodol or Dilaudid from the ER or my PCP (a new one - two others left the practice by this time). At some point during this time, I started using an icepack on my back (my daughters suggestion). It helps provide temporary relief from the pain by causing a numbing effect.
• August '07, I was prescribed a PM doc, best move that could have happened at that time. The PM doc I had in Rehab worked out of Temecula which was definitely too far to travel every month. Narcotics require an actual prescription so I see my PM doc once a month. A script can also be faxed to the pharmacy but my doctor prefers to see for himself how things are going.