Well, it's been 5 full weeks since I sent my MRI to Dr. Fiegenbaum. He has been out of the office for about 2 of these weeks. I am trying to be patient, as I realize Dr. Fiegenbaum is a very busy man, not only does he do these TC consultations for free, he operates on things besides Tarlov Cysts as well, and he has a family. I continue to take my meds, although, they make me nauseated daily, they take away some of the pain. If I forget to take them, I definitely can tell. Taylor started 1st grade yesterday and is so excited, I am glad that she is kept busy during the day in a constructive way, as I can no longer play with the girls like I used to. Taylor asks me if I will ever be able to play with them again. I try to do board games, but can't usually sit that long. We go outside and I watch the girls swim, although it has been so cool this summer, they haven't got to swim as much as they would have liked. Hopefully next summer will a brighter one for all of us.
Dr. F. is in surgery on Tuesdays and Thursdays, so I await his call. Maybe today will be the day.
P.S. Dr. Long from Johns Hopkins is out for surgery of his own, I was told that he doesn't want anyone sending films until October and if you live anywhere other than the West Coast, he wants you to go to him for a consultation, instead of over the phone. So for now, Dr. F. is the route I am going.
Friday, August 21, 2009
Thursday, August 13, 2009
Good TC description
I wanted to share the following from a gentleman (who had surgery a while back). He is on a TC message board that I belong to. This is a very good description of Tarlov Cysts & surgery. He had a good outcome. I am still waiting on Dr. F. to call, I believe he is back in the office this week. I will post as soon as I hear from him.
"It is good to hear from you and regarding the cysts you referred to - they were emptied of spinal fluid and the small orifice that the spinal fluid was leaking through into each cyst from my spine were plugged with thin layers of fat and tissue glue. Layer upon layer which formed a lamination that is very strong and stops the spinal fluid from filling the sheath that protects the nerve. Each nerve has a protective sheath that sticks tightly to the nerve except when for some reason it loosens on the nerve near the spine the spinal fluid then flows under the sheath around the nerve and forms a fluid filled balloon or sack outside the spine around the nerve. When enough fluid escapes the spine and the sheath is bulged larger and larger they are called Tarlov Cysts. The pressure from the spinal fluid trapped inside the nerve sheath becomes so great that it begins to crush the nerve which as we know from experience causes increasing pain and then loss of bodily functions that are controlled by that particular nerve.The goal of the surgeons is to drain the fluid sacks called Tarlov Cysts and then plug the leaking entrance of the spinal fluid which repeatedly accumulates as we pick up heavy objects or become very stressed. The nerve sheath itself has small very important nerves embedded in their thin membranes which the Neurosurgeons have to be extremely careful when they make their incision to drain the fluid and then insert the the thin layers of fat taken from the incision area near our skin. It is my view that those contemplating intervention must be very careful to choose a neurosurgeon with years of experience and a good success rate. It has been my observation and experience that we look for a surgeon that practices very close to our home for our convenience but that should not be the top priority in my view. However each of us has to do our own research as you are doing and weigh all the information and make our decision based on what you believe is proper for you since the choice you make and the result you obtain is what you will ultimately have to live with. I appreciate your patients and hope this has been helpful. May the Lord grant you grace, wisdom, good judgment, and resolution. Blessings Best RegardsSincerly.... ......... ......... ....Walt "
"It is good to hear from you and regarding the cysts you referred to - they were emptied of spinal fluid and the small orifice that the spinal fluid was leaking through into each cyst from my spine were plugged with thin layers of fat and tissue glue. Layer upon layer which formed a lamination that is very strong and stops the spinal fluid from filling the sheath that protects the nerve. Each nerve has a protective sheath that sticks tightly to the nerve except when for some reason it loosens on the nerve near the spine the spinal fluid then flows under the sheath around the nerve and forms a fluid filled balloon or sack outside the spine around the nerve. When enough fluid escapes the spine and the sheath is bulged larger and larger they are called Tarlov Cysts. The pressure from the spinal fluid trapped inside the nerve sheath becomes so great that it begins to crush the nerve which as we know from experience causes increasing pain and then loss of bodily functions that are controlled by that particular nerve.The goal of the surgeons is to drain the fluid sacks called Tarlov Cysts and then plug the leaking entrance of the spinal fluid which repeatedly accumulates as we pick up heavy objects or become very stressed. The nerve sheath itself has small very important nerves embedded in their thin membranes which the Neurosurgeons have to be extremely careful when they make their incision to drain the fluid and then insert the the thin layers of fat taken from the incision area near our skin. It is my view that those contemplating intervention must be very careful to choose a neurosurgeon with years of experience and a good success rate. It has been my observation and experience that we look for a surgeon that practices very close to our home for our convenience but that should not be the top priority in my view. However each of us has to do our own research as you are doing and weigh all the information and make our decision based on what you believe is proper for you since the choice you make and the result you obtain is what you will ultimately have to live with. I appreciate your patients and hope this has been helpful. May the Lord grant you grace, wisdom, good judgment, and resolution. Blessings Best RegardsSincerly.... ......... ......... ....Walt "
Monday, August 3, 2009
Still waiting...
I'm still waiting on Dr. Fiegenbaum to call, but I decided to call his office today and found out he is out for the rest of the week and his assistant said he will be playing catch up next week, so it may be a few weeks until I hear from him. It seems like time stands still when you are waiting for an important phone call.
From what I understand from others he has treated that I am in contact with, he may want more diagnostic tests done before he makes a determination as to if my symptoms warrant surgery or not. I will continue to take my meds and wait it out. If anyone knows of a good pain management doctor in the St. Louis area, please let me know his name, I am interested.
From what I understand from others he has treated that I am in contact with, he may want more diagnostic tests done before he makes a determination as to if my symptoms warrant surgery or not. I will continue to take my meds and wait it out. If anyone knows of a good pain management doctor in the St. Louis area, please let me know his name, I am interested.
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