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Old 08-05-2008, 03:19 PM   #1
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Had an app today about my arms/hands problems...

Hello everyone! I wish you all the best and pain free days!

I finally called my spinal surgeon yesterday and told them that my pain in the arms and hands just unbearable. When i lay in bed, pain gets ever worse. I get up in a middle of the night to go the lady's room and can't use my hands to pull pg down: they clinched and so painful. I can't raise my arms to even brush my teeth or wash my face. This is started a month after my second spinal (lumbar) fusion.
They made me an app to see today Arm/hand specialist at HSS; I took my MRI reports and went to see him. He confirmed that I do have turned (SP?)ligaments/muscles and non-repairable tears. He said that nothing really there what they can do but surgery. But since they have now a DR, one is only one at tri-state area, who was part of the research group at CA hospital, who is doing experimental blood infusions in elbows ( my own blood) he suggests to try these treatments.
According to him reports show up to 90% pain relieve and some patients can avoid surgery after having the treatments.

DR doesn't participate insurance. His first consultation is $400.00 and treatments $500.00 each. How many treatments do i need - have no idea yet. I have both arms affected, so I don't know yet how much in total it could be.

I want to ask if anybody ever heard of these blood treatments or even had this done. My hubby and I decided to have this done no matter what because surgery and recovery is very painful and long. I went and go every day through so much pain and health issues so to add more to my agony by having both arms operated, by not be able to use them for month and month (one at the time) - the thoughts of it makes me very unhappy.

He also thinks that my symptoms will be helpd partially only ( by treatments or surgery) since he believes that all the pain coming from neck and thoracic area caused by spinal nerves involved. Neck - shoulders - arms - hands - fingers. This is becides the elbows pain and problems.

I have to go and see Dr Camissa again soon to determine where exactly pain is coming from and what they can do to help. I just pray that I will not need another spinal fusion. I am trying hard to stay positive and hopefully everything will be OK.

Please stay well and take care!
M.

 
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Old 08-05-2008, 03:33 PM   #2
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Re: Had an app today about my arms/hands problems...

Moldova,

I have not heard of this, but it sounds like it's worth a try. I cannot even begin to imagine the amount of pain you have in your arms, but I can a little bit understand what having arm/shoulder surgery is like. I had to have a rotator cuff repair/bone spur removal and the recovery was very difficult. I can really relate to the part about the PJ's. I would research this procedure as much as you can, but if you can avoid surgery it would be worth it. I will be keeping you in my prayers.

Tigg.

 
Old 08-05-2008, 07:20 PM   #3
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Re: Had an app today about my arms/hands problems...

Moldova, I'm sorry I haven't heard of this either. I hope someone reads this and can give you some info.

( ( HUGS) )

Cheri
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Old 08-05-2008, 07:26 PM   #4
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Re: Had an app today about my arms/hands problems...

Moldova, I am glad that you got in to see someone finally. I have been thinking about you and wondering how you were. I know you have not been posting much because it is so painful. I wish there was some way you could have voice activated dictation or something, lol!

I haven't ever heard of these blood treatments, either. I would agree with Tigg that you should do as much research as possible, just so you know everything you can before going forward with it. If it can keep you from having to have any more surgery right now, then it would clearly be worth a try.

I am praying for you every day, sweetie. I think about you all of the time. Please let us know how things go when you see Dr. C, OK? Sending many, many hugs to you, CMP/MM

 
Old 08-05-2008, 07:53 PM   #5
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Re: Had an app today about my arms/hands problems...

Moldova,

I've never heard of this treatment. I tried doing a web search and still failed to turn up anything. I am not qualified to even have an opinion, other than to recommend that you do your homework.

I strongly urge you to get this doc to provide documentation that describes the procedure, and then do further research based on what you read. In addition, I would ask for references, patients who have received this treatment and can talk to you about it. One more thing - find out in which hospital he does this procedure and call them asking for information about the procedure. If you run across roadblocks or limited info, or the doc is unwilling to provide the info/references, then I'd walk away - fast. If he can support the procedure with info and references, then maybe it's the real deal.

I've been having very bad arm pain too Moldova - I'll start a thread and explain.

Best of Luck and I hope your pain is controlled soon.

steve

 
Old 08-06-2008, 08:29 AM   #6
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Re: Had an app today about my arms/hands problems...

Moldova,

I am so sorry about the arm pain. I truly do understand arm pain and elbow pain. I honestly had never felt pain like that untill I injurded my arm/wrist at work and it took the 4 surgeries to get better. The as you prbably already know I was pain free in the arms when the car accident happened and now I have the neck stuff going on.

I have not heard of this treatment! Does it have a specific name or did I miss that part??

Did you say that a Doc in California is doing this surgery? If so where exactly in Calif. Is it at a university? I know that when my arm-elbow-wrist problems got to the point that is was beyond the experience of any doctor in my area I was sent to U. C. Davis medical center to one of the most renownd Orthopedic Surgeons in the country. Whenever I did research on-line I found his name listed as a source of the information I was reading. He partakes in a lot of surgery.
The Ortho Surgeon I will be seeing for my neck actually knows this doctor because the Ortho for the neck has worked with him before and he also does spinal reseach with U. C. Davis medical center.

I think that a second opinion may be needed. Pick a different docs brain and see what their recomendation is and if they have heard of this new type of treatment your other doc is suggesting. I do know and understand that it can be very scary to undergo a treatment/surgery that is somewhat new and not often done. I did have a surgery that is fairly new that was done on my wrist and I have to say the Ortho from U C Davis was very good and it actually made a huge difference inthe outcome. If it was not available or did not work I would hae had to have metal plates in my wrist basically fusing the wrist joint somewhat.
Now for the elbow it was pretty cut and dry. Ulnar release ot the cubital tunnel.

I would be interested in knowing a bit ore about this treatment. Upper extremity issues are very familar to me and I like to do research on them so maybe we could work together in trying to do some of that. It will help to kee p me busy.
Anyway I hope this all will settle down and a plan will be divised to get things treated properly.

I do know that the surgeries were tough to go through but I have to say the Posterior cervical foraminotomy was even harder then the arm surgeries. Or pretty close! No suregy is fun and thats just that. We have all just been through so much. Please if you ever have any questions or need some extra support please let me know.


Chrissy

 
Old 08-06-2008, 10:47 AM   #7
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Re: Had an app today about my arms/hands problems...

I cherish each of your opinions here - thank you so much!
I definitely will check all what your suggested, Steve, I am very careful about it too.
This Dr's name is Dr. Vad, he is at the Hospital for Special surgery. He is a DR who specializes in sports injures and non-invaisive procedures for spine, arthrities, tennis elbows, etc..
If you don't mind to go and check him out and let me know what do you think - i would really appreciate your opinion. As I said he is at HSS.

I miss you, guys, and I feel for all of you when I read how much pain you are in. I wish I could help you all more with at least an advice, but feel lately like a helpless chicken myself. To have such severe pain from neck to the tip of the toes, being on a lots of pain meds and still not getting any relieve - not fun at all.
Years ago, when I just got my spinal problems, couple of Percocets a day help me so much that I never had to worry about my future. I thought if they have something for me to help with pain - I am going on with my life.
Well, today's situation is very different; despite my LA meds every 8 hours and a lots of BT, my pain is 8-9 all over my body and nothing, I mean nothing helps.
My wonderful PM DR (who I trust and adore) tells me that next step would be Fentanyl patch, but since I hardly survived when I was put on it and only because I was taking to the Hospital on time, he will never try thisone for me again. He doesn't believe that my LA meds have to be increased so often, it's pretty high now.
He says that it very easy to get to the seiling with incresing LA but than what?? One day it will happen if we go up and up in LA... So I stay on his allowance very strictly, but I know that i get less and less help from it. This is what makes me very scary for the future.

Some of us here know that they will get better; let's face it even spinal surgeries go from "mild" ones to a multi-levels fusions and recovery from it is different and sucsess rate for the results are very different too. I am a big optimist by neuture, but I am also very realistic and I know that I will be getting worse, not better due to a lots of complications and other conditions which all of a sudden were discovered during my "recovery" time.

I don't look for miracles, no way! But I want to have something to relieve some pain at least, to go from 8-9 to 6-7 would be nice!!! I want to enjoy my grankids, my family and my friends... I want to attend weddings and other happy occasions even if I have to dance with my cane LOL Who cares? As long as I can get up from bed - I am happy. But right now is tough.

My blessings to all of you.
Love, M.

 
Old 08-06-2008, 12:35 PM   #8
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Re: Had an app today about my arms/hands problems...

Quote:
Originally Posted by Moldova View Post
...If you don't mind to go and check him out and let me know what do you think - i would really appreciate your opinion. As I said he is at HSS...
Moldova,

I tried searching using the new info you gave as search criteria and still find nothing on the procedure. Nothing. And I am very good at searching. I'm not saying it's voodoo, I just can't find one shred of evidence of this blood infusion therapy.

Please be cautious.

steve

Last edited by forginon; 08-06-2008 at 12:35 PM.

 
Old 08-06-2008, 01:46 PM   #9
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Re: Had an app today about my arms/hands problems...

Steve,
this is totally my fault, sorry. Procedure has a name, he told me the name, but just did not stick with me. The only thing I remember he explained what exactly this is: infusion/shots of my own blood into the muscles/ligaments in the elbow.
I tried to do research too but without the exactly name I can't find anything also. I will call tomorrow and ask his assistant, she may know it.
I was told by the DR who reffered me to him that he does a lots of different non invasive procedures for a lot of different Ortho Drs at same Hospital, but this specific one they do only for 2 years (this is new) and it's about 120-150 a month. I don't more than that.
Can't wait to see him, which is next Wednersday and will let you all know what is this all about. I am really exciting to learn something new, but like Steve said I will do a lots of investigation before I go for it. I am not new to a health issues world, so learn a lot in a hard way.

The only thing I can tell you I called my arm/hand specialist locally and told him that I went to HSS and about those treatments, he said that he reads about them more and more, but they don't do it here, it has to be a Dr who has a special training and good results with it to be able to perform them at such Hospital as HSS.
Who knows? I will keep in touch with you to let you know the results.

 
Old 08-06-2008, 11:14 PM   #10
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Re: Had an app today about my arms/hands problems...

Moldova,

After reading the last few posts, I thought I'd check out HSS's site and found written info. and a video about infusion therapy for RA. I don't know if this is what your doc is talking about (it didn't mention specifically what was being infused..... just that there are several types of infusions.) This may be something totally different from what has been suggested to you. It was hard to tell.

I also found a profile for Dr. Vad. He is a physiatrist, which is what my PM doc is too. He seems to be quite well known in his field. I would still do as much research as possible and as someone else mentioned, ask if you can speak with other patients who have had this procedure.

I'm curious to learn what you find out at your appointment. Best of luck with it. I think of you and pray for you every day. Many hugs, CMP/MM

 
Old 08-06-2008, 11:40 PM   #11
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Re: Had an app today about my arms/hands problems...

Hi Moldova - I'm more of a lurker than a poster but I think if you search on Autologous Blood Injection In The Treatment Of Refractory Tennis Elbow you might find some of the information you seek.

best of luck
Marnie

 
Old 08-07-2008, 07:21 AM   #12
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Re: Had an app today about my arms/hands problems...

Thus far Mol my PM feels the same, the problems I am having in the shoulders, arms fingers ect are coming from the thoracic & cervical. You sound worse then me & I feel like a baby complaining, I am afraid to end up like you. I have such pain know. I want you to know that I am praying for you & it breaks my heart to read how much pain you are in, I understand how tough it is when you cant use you arms & hands. I am lucky to have what I have after reading your posts. God bless you & I truely hope you find some relief. Please when you feel up to it keep us informed. God bless, Sammy

 
Old 08-07-2008, 08:36 AM   #13
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Re: Had an app today about my arms/hands problems...

CMPGirl,
thank you so much. You obviously found a lot more infor than I did! lol
I will definetily let you know what is this all about. I think you are right: they are different infusions for a different problems. For example I had many years ago gold infusions for my RA. At that time it was very effective treatments and lasted for couple of years. I don't know if they still do that. The one DR Vad is talking about is my own blood infused into the problem area. I will know more after I see him next week and I will let you know word to word about this new area to me. I am sure everybody here would be interested to learn something new available for us.
I am just a lucky girl that I have access to a place like HSS. Everything is what new regarding research, tests, treatments, etc - available there. And Drs there are so knowledgable and they open to try anything to help you. Of course they are just humans and they can't do miracles, but I learn a lot from that place and their stuff.

Stay well and thank you for your support, sweet heart.

 
Old 08-07-2008, 08:43 AM   #14
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Re: Had an app today about my arms/hands problems...

Dear Sammy,
my heart breaks to read what you wrote. Honey, it really doesn't matter who has worse problems: pain is pain and if it hurts you - you are allowed to complain. That is OK...
I feel for you, but please don't think you may end up like me. Don't forget that i have MS and also RA with Fibro... I had 2 spinal multi levels fusions; so I pray and hope that you still may heal. The hardest thing is to have right diagnoses and when they dx you - than you know what to do and how to take care of it.
What did they do for you to check if your spine is OK? Did you have MRI? CT? If yes, what did is show?

Sweet heart, please, hang in there and try to think positive. That is why i hesitate to post all my problems - I don't whant to scare you all. On one hand I want to share and on the other I feel bad if people like Sammy, who already suffers, gets and idea that she may end up like me. NO-NO, don't do it to yourself, honey, please don't! We all are so different, and our problems are different also. The only one thing we have in common is CP and painfull life...

Hugs and blessings to you...

 
Old 08-07-2008, 08:46 AM   #15
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Re: Had an app today about my arms/hands problems...

Quote:
Originally Posted by marnie62 View Post
Hi Moldova - I'm more of a lurker than a poster but I think if you search on Autologous Blood Injection In The Treatment Of Refractory Tennis Elbow you might find some of the information you seek.

best of luck
Marnie
Marnie, you may be on a money!!!! I will do it today and I think you got something here...
Thank you so much for your help!

Why don't you post? We would like to have you here and maybe by talking to us - you would get some relieve too? Obviously if you came to this board - you have some type of problem. We are here for you, honey, to support and help as much as we can...

 
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