[colleen]

Originally Posted by colleen

I called Dr. Kline's (LSU) office today in my search for someone who has a clue. His office told me that he has retired, but they are referring TOS patients to Dr. Daniel Kim (Houston Baylor). Dr. Kim was trained by Dr. Kline.
http://www.bcm.edu/neurosurgery/?PMID=7782

This was a great relief to find someone who had been trained in TOS. I meet with him next week. Hopefully this information will be helpful to others.

Well, I thought I'd follow up since I posted Dr. Kim as another Houston doctor.

Things I liked:

• He clearly had experience with TOS, although I'm not sure I'd consider him a TOS expert.
• He definately worked with Dr. Kline doing the post-surgical TOS follow-up studies.
• Provided surgical outcome expectations - 60% feel some improvement, 5% feel they shouldn't have had the surgery.
• Said if I had surgery it would be a joint surgery between him and a vascular surgeon & referred me to see a surgeon he has worked with before.

Things I didn't like:

• My appt was scheduled for 9am. I didn't see him till 11:30.
• Rushed appointment - didn't get to ask all the questions I had.
• Said I had neurological and vascular TOS. Didn't suggest any testing to determine which was the dominant issue.
• Gave me the "if you can live with the pain...." speech.
• Never indicated if there might be risks to NOT having the surgery (annurisms? nerve damage?). I mean if my artery is being obstructed, isn't that bad? Should I suck up the reduced circulation to my arm and just deal with it? Is that good for you? Do I really have arterial TOS??? I don't even know what I have.
• Never looked at my c-spine MRI's. Said everyone has bad disks, focus on the TOS and if we need to we'll worry about the disk later.
• I asked if there was any other pt or another pt that I could go to that might help and told him I didn't think my pt knew how to treat TOS. Dr said it looked like I already tried that and it didn't work (I had 6 sessions with a PT that was doing things that I'm reading you should NOT do for TOS).
• The vascular surgeon he referred me to seemed a little wishy-washy. She wanted to redo my doppler study (sorry, but if my pulse cuts off for the first one, it's going to cut off in the 2nd.... just because it wasn't done by Baylor people doesn't mean it wasn't done ok.... I mean how likely are you to have a false-positive doppler scan where it shows your pulse was cutting off but it really wasn't???). Then after that she became more wishy-washy saying "Well, if Dr. Kim wants to do the surgery without any further testing then .... well, I'll talk to Dr. Kim and we'll call you back to schedule any further testing". ----- it's been 2 weeks... no word.

That last 2 bullets are the key ones. I had a phone conversation with Dr. Sanders yesterday. He said that the bad disk in my neck should definately be further investiagated. My MRI showed the c5-6 disk to have moderate central and right side disk protrusion and bone spurring into the right neural foramen causing moderate right foraminal compromise. Dr. Sanders said that this could be causing a good portion of the symptoms of neck/shoulder pain as well as some of the neurological symptoms of tingling in my arm. Dr Sanders also said I definately have not had enough PT and from what it sounded like, not the right kind of PT. He said that therabands shouldn't be used, that they can make the symptoms worse (my pt was using therabands).

Dr. Sanders did give me the name of a Neurologist in the North Houston Area. His name is Lee Pollack. I've seen that name somewhere, but I'm not sure where. Dr. Sanders said that he receives surgical referals from Dr. Pollack and feels that Dr. Pollack would be able to connect me with the proper therapy/treatment. Then if that doesn't help after 3-4 months, then call Dr. Sanders back again......which at that point I guess I'd be more of a surgical candidate.

I was VERY happy with the phone consultation Dr. Sanders provided. I was so upset prior to this that I was ready to hop a plane somewhere just to have someone be able to definatively tell me what is wrong with me and to what degree.

I'll follow up with a review of Dr. Pollack after I see him (unfortunately not for another month). All the doctor reviews people provided here have helped so much. I hope this can help someone else who feels like I do.... completely frustrated, confused, angry, depressed, and everwhere in between.