please tell us the pain will go away...hanging by a thread

[palms0@hotmail.com]

Hi my husband had retrosigmoid removal on 7-20-06 and has been in constant pain starting from the incision wrapping around the whole right side, shooting to the back of head like someone hit him with a bat 24hr's a day since the surgery, and pain occasionally turns to forehead area which blossoms into a sickening headache.I spoke with the dr's nurse and she said others have pain but not for 10 months! so where does that leave us??? We have been going to the headache clinic at jefferson also they just keep trying new meds, now he is using lyrica and cymbalta, with really no relief. Also had botox with really no noticable improvement. He is basically a science experiment at the headache clinic at jefferson(those of you going to the symposium please read my post under headaches it's a real eye opener). My husband expected some recovery time but 10 months of constant pain and no help has changed his life and mine, and none of the dr's really seem to care. They do the surgery and send you on your way. Since all of his dr's are the ones giving the symposium we know there are no answers to be found in phila, so PLEASE someone else who is or has experienced this amount of constant pain PLEASE let us know where to go and who to turn to!!! My husband are young 46 year olds who like to travel and just have fun, and to see him crying and just saying he can't go on like this anymore is devestating, there has to be an answer somewhere.
Praying for all of AN patients and their families.
Mary Ellen
ps on top of the pain his face hurts all the time also and his eye still does not work either so i'm sure you can see why we are at the edge and hanging by a thread

[johnsli]

This has nothing to do with AN, but, my husband was burried in a 20 foot ditch seven years ago.  He has been to sooo many neurologist, pain drs and botox, chryogenics 21 injections in his face.  I no exactly where you are coming from.  He has been seeing a doctor in Philadelphia.  Dr Cohen.  He is fantastic.  He is a headache specialist (Not affiliated with Jeff).  He is located at the GSB Building on the 6th floor on Belmont Avenue.  My husband has had sooo much treatment, surgery, needles exectra.  Hopefully, Dr Cohen can help your husband.  7 years ago some drs. told my husband he would never work, but, he is putting in applications now, and very soon will be working.  Consistant prayer and Dr Cohen have worked a miracle.  Now I have an AN, and I have put it in God's hands.  My prayers and thoughts are with you.  Let me know if you go see him.  We are going tomorrow morning to Dr Cohen, and I go to see Wilcox at 2:00.  I am going to talk to Cohen for his opinion. 

LOL
God Bless
Laura

[palms0@hotmail.com]

hi laura thank you so much. I tried to find dr cohen on google with no success could you give me his info? I'm so glad to hear your husband is getting better Sorry to hear you now have an AN but please get other opinions, we did not and you can see how bad his outcome is. Keeping you in our prayers.
meb

[johnsli]

Dr Michael Cohen
620 GSB Building
City Line Avenue and Belmont
Philadelphia, PA
610-664-3888
He is the sweetest dr you could ever meet.  I know what you are saying about second opinions.  I counted my husbands drs and we have seen about 25 different doctors, therapist and neurologists.  Hopefully you have success.  You certainly can mention my husband or myself.  Laura and Mark Johnson.  We have been seeing him for 3 1/2 years.  I know what you mean about tears.  My husband used to cry alot, but, thank GOD those days are gone.

LOL
Laura

[palms0@hotmail.com]

Laura thanks again for the info if I may ask what helped your husband from dr cohen's treatment? I scheduled an appt in june already. I'm keeping my fingers crossed my eyes too!!
meb

[nancyann]

Hi Mary Ellen:   I'm glad you were able to get the name of a dr. (per Laura) that can help.  In the meantime, I don't know how you guys feel about 'mind-body' but I'm a firm believer in it.   I'm wondering if biofeedback, along with medical treatment, would be of help.    I had excrutiating headaches post op, can't take opioids, so I would do visualization - seeing a white light enveloping the pain as I breath in & then blowing out the pain - it sure helped.   I can't imagine what it's liike for your husband having pain 24-7.   I am doing acupuncture for my facial paralysis - I wonder also if that might help him with the headaches.   At the point he's at I'd try anything !!   I also was a traveller pre-surg., & intend to start up again (3-4 times/year) as soon as all the 'facial monitoring' is over.   Granted, I can't do the mountain biking, hiking like I use to, but I have 2 good legs & a desire,  that's all I need.   I hope he IS at least getting out, walking in the 'fresh' air.   
My thoughts & prayers are with you both,   Keep a peaceful heart,   Nancy

[palms0@hotmail.com]

Hi Nancy you are always so positive and upbeat that's how I want the both of us to be again! You are an inspiration:)
Yes Don will try anything he did do acupuncture for a past problem and it may have helped a little. How do you go about finding someone who does biofeedback and does ins cover it? I'm glad you are getting some help. How is your eye feeling? Since I work for ophthalmologists I always keep on the eye problems. We are taking baby steps for traveling. We are going to Cape May NJ for a few days since we can get there by car; he is really concerned to try by plane yet, and with feeling so bad he really does not want to spend the money if he can't enjoy himself.We do try to walk 2 1/2 miles each evening but with his headaches some days he is just not up to it and it really shows on my waist line
He is trying to work, he is a plumber and this time of year he is always outside working on large swimming pools etc, but with the wind, chlorine etc is having a hard time with his eye. We are going to go to our local motorcycle store to get those 20.00 glasses with the foam in clear and sun to help. I'll keep you in our prayers, hopefully they will help it's just taking a long time, but I figure just 1 more prayer may tip the scales in our favor. Thank you for you kind words!
Mary Ellen

[nancyann]

Hi Mary Ellen:  Thank you for the kind words, we're all here for everyone !!!   As far as biofeedback, maybe check 1st with your insurance co. to see if they'll cover it (you may be able to get it covered with a dr's authorization) - I'd google the word & see if you can find qualified people in your area.   I personally did 'visualization' for my headaches - I knew about it from a past class I took for continuing ed. credits.  My eye is in 'limbo' right now - I'm waiting for the lid to heal before they can put in a platinum weight (thanks for asking !).    I really can't imagine constant headaches - believe it or not that was the 1 thing that bothered me more than the facial paralysis - my heart goes out to your husband.   I wish you both all the best,   Nancy

[johnsli]

Mary Ellen,

I am not sure where you live, but my husband has been going to a chiropractor for his headaches, and I think it has helped alot.
He hasn't been able to go for the last 5 weeks, because he has been going to school for Heavy Equipment, (which by the way, he is done, and sending out resumes) but if you can get to exton, this guy is great.  He is Dennis DeLoretta phone 610-363-9088.
His wev is www.delorettachiropractic.com.  I guess at this point anything that would help is good.  Boy, this really makes me forget that I have an AN.  I love helping people.

LOL
Laura

[cookiesecond]

Mary Ellen,
You guys are in my thoughts and prayers.I do not have constant pain but I am battling several other health issues and can relate to how frustrating it can be....
I pray you will find relief soon and for better days!!! God is good and He will get us through this.
Have a blessed week,
Lynn

[palms0@hotmail.com]

Hi Lynn
thanks for the kind thoughts, I hope you are feeling better soon. We keep hoping that 1 more prayer will tip the scales and overflow to all of the AN families.  I just wish everyone who has an An takes their time to consider all options, so more people don't have to suffer like Don. I guess it is just upsetting to see all of these people going to the symposium looking for answers and hope, when in fact they are the same dr's that did my husbands surgery and have no answers for us.
God bless
meb