I am a newbie guys..

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Mevans27
Regular Member


Date Joined Dec 2009
Total Posts : 33
   Posted 12/14/2009 6:52 PM (GMT -7)   
Hello I am a new member here. I think this site is awesome. I have had alot of people around in my life but no one I have been able to relate to very much due to my condition. I was diagnosed with neurofibromatisis type 1 when I was 7. I have had 19 surgeries since and now I am 22. These are orthopedic surgerys mainly. I was recently diagnosed with PVNS in my left hip. The doctors just from looking at xrays could not understand why my femural neck has been "eroiding" away, and after ct scans/mri's we know. I am currently taking vicodin/ultram for pain. I take 50mg ultram daily, and the vic when the pain is crazy bad. I have dealt with surgery my whole life so the pain that has recently gotten very bad I just drag myself along thinking thats what normal to people, but as we all know on here it is not. I am planning on seeing a new PM doctor for pain help. Any suggestions on medications that may be more affective? Again I thank you for this site. If it wasnt for everyone, such an awesome site wouldnt exist. I look forward to posting!
 
Mike

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 12/14/2009 7:07 PM (GMT -7)   
Mike,
Welcome to the CP site. I'm not real sure of your diagnosis and won't be of much help. I can tell you that you've found a wonderful place to ask questions and quiz folks. I've not met anyone in here that isn't caring and compassionate. In one way or another we all share one common thread and that is we hurt most all the time and sad but true it is nice to find people that share your pain and can identify with you. 22 is so young to have been through what you have been through and what you are going through. I hope someone in here will be able to be of more help than I am. Again welcome.

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/14/2009 8:18 PM (GMT -7)   
Hi Mike,

Welcome to the group! You're right, this is an amazing group. It's helped me & so many others in more ways than you can imagine.

I don't have any med suggests or anything for you. I think your doctor is best to assess that. All I can say is what works for one person doesn't necessarily work for another. Our bodies are so different & respond to meds differently. For example I am very resistant to most medications. In fact we essentially tried every medication in the book for pain, etc, but I didn't get relief from any of them, even large doses of opiate medications. Most of the doctors that I've seen have never seen someone so resistant to so many medications, they think I must have a really strange biochemistry or am lacking some kind of receptor in my brain.

I can relate to the whole age thing. I'm only 21, and unfortunately I've found that some doctors didn't respect me because of my age. I had to go through quite a few bad ones before finding the great team of doctors I have now.

Welcome again.

Skeye

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 12/14/2009 10:00 PM (GMT -7)   
Hi Mike!

Welcome to the Family! I am sorry you were driven to look for this kind of help, but at least you've come to a great place for support and friendship. Obviously we're not medical professionals but we can share our experiences with you and others.

I agree with Skeye...age discrimination is alive and well when it comes to treating chronic pain. Doctors are worried about dependency and addiction and with good reason, BUT there are good types of treatments and medication that can help even if you are young. One thing that researchers have found out...The Arthritis Foundation and Stanford Pain Center...is that addiction is extremely rare in people with chronic pain. We're talking less than 1/2 of 1%! But the also have to weed out the true CP patients from the drug seekers and those folks along with the street druggies are what not only give us a bad name but make it nearly impossible for some to get proper and respectful treatment. It's shameful how some people are left to suffer in pain only because others have lied and cheated the system ahead of us...and we see it daily on Healing Well.

And I agree with the other suggestion...it IS best for your doc to decide on what med's to try. But that said, it is fair to share what works for me. I also highly suggest you not go into your doctor and ask for a specific medication. If you had something like high cholesterol and asked for Lipitor not one person would even raise an eyebrow. If tests showed you needed something for this condition then the prescription would be yours in a heartbeat. BUT, if you go in with pain and ask if you can get a prescription for Oxycontin with a side of Vicodin...you best start heading for the door. See what I'm getting at?

I have asked my doc if specific medication were something that might work for me, but consider your own relationship with your doc before you do. Personally I take oxycontin and percocet for break through pain. It's a serious combination but it's the only thing that lowers my pain enough to live some sort of meaningful life. I am fortunate to have a doctor who believes in respectful treatment and quality to life. But he's no fool either. I have known him for many, many years as a patient and also as a fellow member of our community. Having a good, long standing rapport with your doc makes a huge difference.

OK, I've rambled on long enough. I do hope something I've shared is helpful. Always ask any question you want in here. You are among friends and 'family'.

Hugs,
Chutzie
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


Mevans27
Regular Member


Date Joined Dec 2009
Total Posts : 33
   Posted 12/14/2009 11:24 PM (GMT -7)   
Hey guys thanks for the info. I do agree with my age it seems that doctors look more at how young you are and not at the fact of what you are dealing with. Chutzie I do agree in this generation and with all of the people abusing the medication it has put a bad image on medication. I do agree with my condition I will let the doctors decide what will work best and most efficient. The vicodin works alright for pain but I dont think it is an appropriate pain medication for CP. Works well for short lasting needs, but contains too much for long term. I would rather take less long acting meds than more short. I am always open for all other methods to help my situation in addition to medication that may be benificial as well. But again thank you guys for the responses.

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/15/2009 12:25 AM (GMT -7)   
Mevans,

I turn 23 on Friday, so I also understand that sometimes its harder for the medical community to understand younger people in pain. I know I always get weird looks at my PM clinic. Hopefully you and your doctor can work out a plan that you're more comfortable with!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 12/15/2009 1:16 PM (GMT -7)   
 
 
Mevans,
Hi...and glad that you found us...This place has helped me, and others, so much.  Just having the support is amazing. And we all have a story to tell, and believe me...they vary from one end to the other.  The one thing we all have in common?  PAIN!!  Different levels, different types of course, but it's all the same.  I have had Lower back troubles since I was about 20 and I'm 42 now...that's a long time... and I didn't know about PM Dr.'s until about 6 years ago... so until then I never had continuous pain relief.  I love my Dr.'s!!!wink  If it weren't for them I'd be in a very bad place..
 
Anyway, here's my story about my pain meds:  I take 120 mg. Methadone a day along with 30 mg. Oxycodone IR up to 4 times a day for the breakthrough pain...  the methadone helps me with the around the clock pain (most of it anyway) but I still need to take the BT meds.  Some PM Docs don't like to give BT meds...why? I have no idea.  So, I have been on a multitude of narcotics through the years and methadone...so far helps the best... I am going to be trying something different after January 1...Opana ER.  I have heard mixed reviews about it, but have been on Methadone for over 6 years and I think I need to change it up.  It will help since I have built up a tolerance.
 
Make sure that you talk to your Dr. about needing something for the long-term pain because taking Vicodin will only help you for a few hours.  Good Luck.
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/15/2009 1:52 PM (GMT -7)   
Hey, Mike, glad you are feeling comfortable with us already. One thing I'd like to point out is that when you are checking out PM doctors ask whether they prescribe meds plus do other procedures. Some don't prescribe meds so ask before you waste your time.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Mevans27
Regular Member


Date Joined Dec 2009
Total Posts : 33
   Posted 12/15/2009 2:06 PM (GMT -7)   
uniquelyme
I agree. The vicodin is only a short term use that is not nice on the stomach. I have always seem the methadone option but I do not know alot about it, other than the chemical structure lol. I am trying to balance a median of medications for pain as well as alertness for my job (chemist). I deal with alot of strong chemicals that require a lot of concentration. Have you have any experience with oxycontin? I have been given it following a bad surgery and it worked very well.
I always see alot of the idiots on "intervetion" with the abuse to it, so I have kind of shyed away from the drug. But as we know, these people give a bad name to about anything you can digest.

As far as back pain thats horrible. I am starting to have alot of lower back pain from (transitional L5 segment, decreases disk height) from my condition. And although my hip pain has been extremely hard to deal with over the years, back pain is a whole other story.

Thanks again for the replies guys
Neurofibromatosis Type 1, PVNS left hip, Arthiritis Left Hip/Knee
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/15/2009 11:16 PM (GMT -7)   

Hi Mevans,

I too would like to welcome you to Healing Well. I am so glad that you found us but always hate to see another new person come along that is stricken with CP. From reading your post you are a veteran when it comes to the pain dept, so unfair for someone your age to be afflicted with something that most tend to think only happens to the older folk. 

Chutz really gave some wonderful input for you to consider. I do hope you have a good PM that will help take care of you.  I am sure it is difficult getting a dr to understand that someone your age is having horrible pain. It is like being in a catch 22. Like she says if we go in to a dr and ask for a certain pain medication that pretty much writes your ticket out of that office. All of us here could say what pain medication we take, but since we metabolize medicine differenty, what may work for one person may have no effect on another.  It would be great if you could get a long acting medication and then something else for break thru pain.

Uniquely Me is our lead person here on Methadone. She has been on it a long time and really knows the ins & outs for it. But, it is a drug that really should be used as a last resort since there are so many other potential  meds that are effective.it can be a wonderful pain erliever no doubt. It has the half life time that has to be dealt with. Another thing about it is it should only be used as a long term medicatrion. It is not for short term use.

I hope you are able to get some real relief soon. Take care and keep us posted on how you are doing.     

 


 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/16/2009 4:21 AM (GMT -7)   
Glad you could join us Mevans! When looking for a PM doctor make sure to ask if the prescribe meds along with doing procedures. Some docs don't prescribe narcotic meds so ask before wasting your time. I went through this so I've learned from experience.

Also, remember that not all doctors are equal so you may have to try a few before finding the right one for you. Hopefully you'll get lucky on your first try.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Mevans27
Regular Member


Date Joined Dec 2009
Total Posts : 33
   Posted 12/16/2009 8:54 AM (GMT -7)   
Straydog,
Thank you for the input. It is hard to relate to others at times because of age, but as I see it, it only makes us stronger. I dont think I would consider methadone until a last resort like you said. It seems to have very benificial relief to a lot of people. I was just given a new referral to a new PM dr here by my orthopedic surgeon. He thinks that he would be able to do a lot for me.

Alot of my pain is not only coming from the PVNS of the hip, but from my shallow socket itself. Because of the NF I have, it acts sort of like a patient with displaysia. I live in tucson, az and on the 22nd of this month I am seeing a specialst in san diego to get advice on a new procedure they call "Peri Acetabular Osteotomy". Although this does not solve the PVNS, it will help some of the other issues of te hip. Gotta take a step at a time right?

Thanks again for the posts guys. Between my massive erray or studying/work I find enjoyment out of relating alot of issues I have not been able to do before.

Mike
Neurofibromatosis Type 1, PVNS left hip, Arthiritis Left Hip/Knee
 


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/16/2009 9:21 PM (GMT -7)   
Mike,

What are you studying? I'm in graduate school right now, ended up having to take two incomplete grades for the semester but I'll hopefully get caught up over break. I know I've been blessed with really understanding professors, hopefully you have the same!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/16/2009 9:57 PM (GMT -7)   
Mike,

Wow! I wish you the best with the orthopedic surgeon in San Diego. This past spring semester I did a research internship with a pediatric orthopedic surgeon at our local children's hospital. In addition to working in the lab I also got to observe a lot of clinical work, including spending one day in the OR every week. I actually saw bilateral periacetabular osteotomies done on a 5 yr old patient. That particular surgery sticks out in my mind because of the length & extent of the procedure. Most orthopedic surgeries that I observed took anywhere from 2 - 5 hrs. This one surgery though, took over 10 hours (although the kid had cerebral palsy, so she had other more minor orthopedic problems with her hips/legs that needed to be addressed as well)! I hope I'm not scaring you or anything, but I just want to wish you lots of luck & strength. I'm so sorry that you even have to consider such a tough surgery, you must have phenomenal inner strength! Of course the hope of being pain free, or at least being able to manage our pain is a very powerful driving force & it's all worth it if you can obtain that goal, but still, I admire you! I hope your visit with the doctor is enlightening & that he can fix you up with minimal additional pain & discomfort!

hugs,
Skeye

Mevans27
Regular Member


Date Joined Dec 2009
Total Posts : 33
   Posted 12/17/2009 9:37 AM (GMT -7)   
Jenna, I graduated with my bachelors in chemistry from the Univesity of Arizona. I also want to attend graduate school, but from being so burnt out I plan to work for a couple of years before I do. I understand the incomplete thing, with my having surgery is what always puts a kink in school. I have planned them over the summers for the most part which has helped. I do have some very understanding professors that have worked with me. It is a blessing since that is hard to come by.

Skeye, thats very cool about the internship! I originally wanted to go into medicine and orthopedic surgery because of how much my own case has interested me. Your right the osteotomy is an intense procedure. Its amazing how they can cut out an entire hip socket from the pelvis and rotate is how they want. After a few surgerys myself I get excited for anything that is new and that may help, although a rough procedure. I have had a couple of femur osteotmys, so I am use to what lies ahead as far as down time. Thanks for the reply!

Mike
Neurofibromatosis Type 1, PVNS left hip, Arthiritis Left Hip/Knee
 

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