Hello. I am 9 months post op. I have been experiencing extreme tightness in my lower skull and upper neck, that has been progressively worse in the last few weeks, and causing a great deal of fatigue. Heat helps a little, but not much. My NS did not recommend PT in the first few months after surgery due to CSF leaks; they have all resolved a few months ago. Today, I received a note from his PA that he will prescribe PT and that Range of motion exercises, stretching, building endurance, massage, TENS may be beneficial in relieving the tightness in the neck. I have seen some posts here that some pt has been more harmful than good and would like to hear from those who have had PT. I plan on making an appointment for a full consultation before I begin, but value all of your opinions first. Thank you all so much!
I have no personal experience since i was diagnosed about a week ago, but my wife is a physical therapist who specializes in orthopedics. I can tell you for sure that like any health care practitioners, pts are really a mixed bag. Look for someone who has experience with post-op neck/brain surgery and uses EVIDENCE-based practice. There are some out there who will want to try voodoo on you that has not been researched.
I am in physical therpy for the second time since my surgery in November. It has been the one thing that has helped. Initially, I went at about 2 months post op and continued for 2 months. I am in physical therapy again to help with symptoms of thoracic outlet syndrome. Again, it has actually helped. My nerve pain and tingling is no longer constant. For me, physical therapy has invlolved quite a bit of work on my own time as well. I have exercises I must do several times a day, but I am willing to do them because it helps. I have been happy with both physical therapists. It is nice to have someone listen to me and give support and reassurance. It is my goal to stay active and that is also the goal of physical therapy. I have also appreciated their explanation of what is happening in my body. They have a different perspective than the NS and NL. They are willing to find out why I have certain symptoms even though someone else has said my surgery was “successful” and my MRI looks “great.” I wish you luck and hope you find it helpful as well!
I have had trigger points done. As well as injection of botox and lidocaine. On top of strong pain medication. If ur in the dc area I can give u the names of spme great drs. Also get a therecane they do wonders. I hope u find relief soon
I initially had PT and it either did no good or caused more harm. Then I saw a physiatrist, which is a doctor of physical medicine and rehabilitation. I was in the process of scheduling decompression surgery during this time. Because the exercises/PT the physiatrist had me do at home helped so much, I no longer pursued surgery and continued to improve with just PT alone. My surgeon Dr. Henderson actually said in good conscience he could not do the surgery on someone who had shown such improvement. So that's something you may want to consider. My physiatrist accepted my insurance and I only need to see him every 3 months or so since the exercises I do are at home. I hope this helps.
I went through PT about 3 months post op, it was completely exhausting and was very frustrating. A big factor was scar tissue. My PT had to manually manipulate my neck muscles and "break up" as much scar tissue by massaging and rubbing the scar tissue. She also had to make the actual incision sight less sensitive so she often rubbed different textures down the scar to desensitize it. That feeling made me want to vomit, but after 3 months of hard PT my range of motion went from less than 25% to about 75% of what it used to be. Looking up is still difficult but I have very little of my C1 left so it's naturally going to be difficult. I think a major factor in PT is the actual therapist. Check out a few PT's and get to know your PT first. I LOVE mine, without her pushing me to do better I wouldn't have made it as far as I have. Some PT's are better than others, so I would suggest looking around until you find one your comfortable with. Best of luck to you!
Nicole, I am in the DC area. What is trigger points and who in this area does that? Thanks.
nicole said:
I have had trigger points done. As well as injection of botox and lidocaine. On top of strong pain medication. If ur in the dc area I can give u the names of spme great drs. Also get a therecane they do wonders. I hope u find relief soon