MVD #1 Diary - Bob Scrudato
Summer 2005:
In early August 2005 I went to Pittsburgh to have a consultation with Dr Kassam. All went well and I was convinced to schedule the surgery. However, because I am not from Pittsburgh the insurance company couldn’t provide the costs as they do for an “in-network” provider, which could mean serious financial liability for me to pay. At the Pittsburgh facility, one billing department handles all billing issues for all of their doctors, and unfortunately they would not provide detailed pricing information to my insurance company. They gave some general verbal quotes but refused to put anything detailed in writing. Therefore, without a clue as to what my financial liability would be, I was advised to find a facility that was in network or one that would be more forthcoming with the cost information. My insurance company made several suggestions and let me follow up and make my choice as to how I wanted to proceed. This process took me to October 2005 when I decided on Dr. Ronald Brisman, who was in my network plan and would perform the entire surgery for a co-pay. I contacted him and he was very open and honest with providing all the information that I requested. He gave me his experience record with MVD surgeries and agreed to provide references.Monday, November 21,2005 – MVD Consultation:
I met with Dr. Brisman and we scheduled the surgery for Friday, November 23. We tried for the 23rd but the I/O monitoring team that he works with couldn’t be available for that day. I was sent across the street to the Hospital and given a MRI that took about 1 hour and then returned to Dr. Brisman's office to review it on his computer. I was amazed at the clarity, and for the first time since I have been getting these MRI’S, I could fully understand and see the compressed area clearly. He showed me a HUGH blood vessel lying on top of the 7th nerve in the area of the brain stem. He told me that this made him more confident that the surgery would provide permanent relief. He said that he had never seen a vessel this large in this area before and believed if he could get the weight off the vessel and pad the nerve that I could be spasm free. All else looked normal. I questioned the size of the vessel and if there was a potential for any other neurological problems. He assured me that there was nothing to worry about, although the size and location of the vessel was abnormal it didn’t pose any other health risks.Tuesday, November 22,2005 – Hearing Tests:
I went to a local medical lab and received a hearing test. The results were normal.Wednesday, November 23,2005 – Pre-Op Testing:
I went to Columbian Presbyterian to have all the pre operative testing completed.Friday, November 25,2005 – "MVD Day":
I arrived at the hospital early 5:30AM. I was requested to get there at 6:00AM for another MRI, which Dr. Brisman required before performing the surgery. Well normal hours start at 7:00AM so we waited and it was at least 7:30AM before they began the MRI. When my tests were completed, Dr. Brisman was waiting at the lab and escorted me to the Operating Room. I guess we were now running a little later than planned and he guided me through the admitting process into the Operating Room and about 10:00AM they put me under. The surgery took extremely long and I awoke in recovery at 8:30PM! I was kept in recovery, with a full time nurse at my side for the whole time, until 8:00AM the next morning. A great part about the recovery room experience was that they allowed my family in to spend a few minutes with me right after I came too. The first thing I did when I came too, was checked to see if my hearing was ok and that I could swallow and all was well. The worst thing I remember about waking up in recovery was that I couldn’t believe how dry I was and the dehydration lasted throughout the entire night. Another odd thing that occurred in the recovery room was that my anesthetist stopped in and was very concerned about all the trouble that they apparently had inserting a breathing tube for the surgery. She explained that it caused a substantial delay in the surgical procedure. She told me that I should inform my regular Doctor to keep this information on file. In her opinion a breathing tube should not be put in me without the aid of a fiber optic. I guess this explains why my voice was so weak and hoarse.Saturday, November 26,2005 – 1 Day Post-op:
I must say that the care you receive in the regular hospital wing is not very good at all. It appears that the nurses are worked way too many hours and cover too much territory. It’s a shame what is happing to this profession. However, in spite of that they went out of their way to remain pleasant. The first thing I noticed about the spasms is that they are still there but the “tonus” seems to have gone away. It’s amazing but I only have a slight headache, which they treat with Tylenol. If it wasn’t for the digestive problems that now developed I could have said that this surgery was almost uneventful. However, for reasons not fully known to me I had serious digestive complications, which made me sicker than I have ever been in my entire life! NOTE: I recommend a through discussion with your surgeon prior to surgery to define a plan with the hospital to get you the best and immediate treatment for this condition should it arise. Due to these new complications I couldn’t eat, drink or sleep at all. I really started to go downhill fast and the response from the hospital staff and on call doctor was inadequate and slow. Out of pure misery and frustration, at 4:00AM, I got out of bed found the elevators and navigated my way from the 11th floor wing to the 4th floor recovery room. I entered the room, located a doctor, explained my situation and he said he would get me immediate attention and medication. Temporary and inadequate treatment arrived at 8:30AM.Sunday, November 27,2005 – 2 Days Post-op:
Not feeling very well at all, and at the point of total exhaustion, I convinced the hospital to discharge me as originally scheduled. We left the Hospital at 10:30AM for a two-hour drive back to my home in New Jersey. In the afternoon I noticed the similar digestive problems arising again and began to worry. Additionally, as I began to focus on my senses, I noticed that I had pretty intense pain on the left side of my body (Ribs, Hip, Thigh and arch) and some large indentations on either side of my skull. Upon examination, some serious bruising and marking where the restraining strapping was apparently connected.Monday, November 28,2005 – 3 Days Post-op:
Dr. Brisman called to check up on me and I told him about the digestive problems and he didn’t seem too concerned and said that it will probably pass. I informed him that I had stopped taking the medications that he gave me because I thought they were making me sick and he asked me to resume the medications. One is a steroid and he said it would reduce the brain swelling in the area of the operation, explaining that this is very necessary to help get the nerve to calm down which he said endured a good beating during the surgery. The other medication, although it might cause digestive complications, is needed to assist in calming the nerve and is an anti-seizure medication. Cautiously, I went back on these medications with the understanding that if I got sick I would discontinue their use. The anti-seizure was the worst and I felt really horrible every time I took it so I gave up. I stuck it out with the steroids.Tuesday, November 29,2005 – 4 Days Post-op:
Feeling a little better today and eating regular. I still have the spasms and can’t tell if they are less severe than before surgery. Dr. Brisman tells me that I need to be patient and allow 2-5 weeks for all the irritation and swelling to subside before you can tell if the spasms will totally disappear.Wednesday, November 30,2005 – 5 Days Post-op:
Today I am feeling ok but my stomach is not in good shape. I'm having similar sensations like I had in the hospital before my digestive problems started. Other than that I rested all day and nothing changed.Thursday, December 01,2005 – 6 Days Post-op:
Disaster! I wake at 3:00 AM with the worst headache ever. The top of my head feels like it is going to blow open. My stomach aches and I feel nauseous. At 6:00AM I paged Dr. Brisman and he instructs me to get to the nearest Emergency Room and have the doctor there call him about giving me a Cat Scan of the brain to rule out bleeding or blood clots. The CAT Scan was negative and I spent most of that morning having other tests done and was sent home about 1:00PM with a narcotic for the head pain, which worked, but my stomach was worse than ever. At 8:00PM I was returned to the hospital ER for more tests. My stomach is bloated and I am in considerable pain. My digestive track doesn’t seem to be functioning at all. At 12:00 I returned home not feeling much better than when I originally arrived at the Emergency Room.Friday, December 02,2005 – 7 Days Post-op:
At 8:00 AM I am taken back to the ER. I was up all night with nausea and pain. I am now at the point where I haven’t eaten or slept in 3 days and I am very weak. The entire day is spent in a room in the ER having tests and X-Rays done all day. I finally arrive home with my entire digestive system totally empty and apparently functional at about 8:00PMSaturday, December 03,2005 – 8 Days Post-op:
This day I am like a zombie and as tired as I am, I can’t sleep. I am trying to eat but have no appetite at all. This seemed to be a day of misery that lasts forever. I went to bed at 9:00PM and only slept for a few hours.Sunday, December 04,2005 – 7 Months Post-op:
As the day progresses, I feel my strength returning. I am eating again and resting somewhat comfortably with no real headache to report. I actually was strong enough in the afternoon to watch the entire Giants-Dallas game. Giants Win! LIFE IS GOOD again.Monday, December 05,2005 – 10 Days Post-op:
At 5:00 AM a friend picks me up to go to Dr. Brisman's office in NYC for my exam and removal of the staples. Everything looks good and the staples are removed. He encourages me to be patient and said that during surgery nothing surfaced that would make him doubt that the spasms shouldn’t stop. We are hopeful that all we need now is some time for things to settle down in the area of the MVD. Dr Brisman suggests that I try another anti-seizure medication (Clonazepam) 2X per day to help calm down the nerve. I reluctantly agree with a mutual understanding that if it gives me adverse side effects that I will stop. Another appointment for a month is scheduled and I return home.Tuesday, December 06,2005 – 11 Days Post-op:
The anti-seizure medication isn’t agreeing with me very well. Although it did help me sleep a little better. However, after I take it, it really makes me tired and unable to function at all. If anything, the spasms seem worse after I take it.Wednesday, December 07,2005 – 12 Days Post-op:
Today, I feel pretty good. I can really feel my strength returning. However, as soon as I took the new medication, I went downhill fast and had no energy. I feel jittery and have trouble collection thoughts and putting sentences together. I think I am about at the end of my patience with this medicine.Thursday, December 08,2005 – 13 Days Post-op:
I feel good today, maybe just a little shaky. I am convinced to stop the anti-seizure medication and see how it goes. The left side body pain that I have had since surgery is all but gone, except for my upper rib cage, which is still bruised and welted. I begin to wonder if I have a cracked rib. Once again I feel nausea and have a substantial amount of pain in my stomach.Friday, December 09,2005 – 2 Weeks Post-op:
I was up all night in pain and discomfort with nausea. I contact a local Gastroenterology Specialist and request an appointment. They are booked solid for five weeks. After explaining my history they ask me to come in immediately and to have the hospital transfer all the records of my ER testing and treatments to their office ASAP. After reviewing my hospital records and history it takes the Doctor about five minutes to diagnose the problem and provide a treatment that will work. It seems that this all goes back to being under for ten hours. Typically, this much anesthesia will shut down your digestive system and you need proper treatment to start it up again. My system was still shut down! In two days this treatment had me functioning normally.Tuesday, December 13,2005 – 18 Days Post-op:
Now that my digestive system is fully operational I am eating and sleeping properly and I really feel good. Dr. Brisman calls me to check on my progress and I advise him of what I had been through and that I stopped the Clonazepam. He convinces me to try another anti-seizure medication (Neurontin). This medication needs to be started out in small doses and gradually increased until you are taking it 3X daily for a total daily dose of 600MG.Saturday, December 17,2005 – 22 Days Post-op:
I am feeling really great, however, the spasms haven’t left me. I held off until today to begin taking the Neurontin.Sunday, December 25,2005 – 1 Month Post-op: (Christmas)
I am starting to experience fatigue and headaches and am convinced that it is from the Neurontin. However, I enjoy a big family Christmas dinner at my Cousins house. I had a few glasses of wine with dinner and my headache became more intense.Sunday, January 01,2006 – 37 Days Post-op: (New Year's Day)
I am on the full dose of Neurontin (600Mg daily) and my headaches are a daily event that last for a couple hours. I am very fatigued and have no spasm relief at all. If anything, the spasms appear to be worse than prior to surgery and Tonus has returned.Wednesday, January 04,2006 – 40 Days Post-op:
I contact Dr. Brisman and inform him that due to the side effects and no apparent spasm relief, I want to stop all medications. He advises me that this medication cannot be abruptly ended. I need to come off the medication gradually over a two week period. So I begin the process of being medication free.July 09,2006 – 40 Days Post-op:
To date no relief from the spasms or Tonus.