Desmoid Tumor as a Child, Pain as an Adult

[accountant123]

Hi,

I've been scanning through the forums and feel comfortable sharing my pain issues with you folks.  Hopefully I can obtain some feedback on medicine/support.  I'm currently 25 y/o and am experiecing all types of moderate to severe pain inmy right leg (behind the knee, along calf/bone, ankle and toes).

Background:
I was born with a non-cancerous tumor known as "Desmoid" in the soft tissue of my right calf.  I underwent surgery after surgery from the age of less than a year old to 12 y/o (was a Shriner's Children Patient until 21y/o).  Over the 12 years the tumor grew in all parts of my right leg, spreading up behind my knee and thigh.  Every year I would have a surgery to re-attempt to remove all the tumors/cells.  All surgeries were unsuccessful and I eventually underwent chemo therapy at the age of 12 as a last resort.

Thanks to the doctors and God my tumors shrunk and never grew again after chemo treatment.  I've not had another surgery or treatment for the tumors since that age!  However, the aftermath on my right leg is severe but i am able to walk.  Note: after the age of 12 I did have 3 other surgeries to correct painful deformities in my foot and ankle that were caused from the earlier surgeries.  

Question:
My whole life, the pain has only been moderate and never severe.  I've never been on any pain medication for longer than a week and have been able to deal with the light to moderate pain.  However, over the last 2 years it has began to hurt more and more...  I recently had an MRI performed and there were no changes and no tumors causing problems (what a relief!).  But I'm left with severe pain almost all day long.  I have massive scars everywhere, most of my calf removed, sensitive spots all over my leg, and aches in every joint.  Overall, my leg is in severe pain in various spots and with various types of pain.

I have started taking 900mg gabapentin around 6 Norcos (10mg hydro/ 325mg APAP) everyday for the last 2 months.  These usually don't eliminate the pain but bring it down to a bearable level (am able to work and focus through it).  Anway, the hospital was prescribing me these meds and have told me to find a PCP to begin treating the pain.

Can you guys share your thoughts (those with experience) on taking narcotic pain medicine everyday?  Can a person sustain taking narcotic paind medicine everyday for the rest of their life?  Do you think the APAP in the Norcos is going to be a concern?  With the 6 pills I take, I'm getting just bearly enought relief.  Would it be better to take something else?  I'm just getting down about all this and feel like I don't really have anyone that understands.  I'm getting pain severe enought that I don't care that I'm dependent on narcotics.  But is this sustainable for life or what am I to do?

Thanks for listening...  I apologize for the long post.  

[accountant123]

Thank you for the response and taking the time to provide information conerning my question.  I'm happy to see the information from the link provided and will share it with my wife tonight.  It's a maturing experience recognizing that my youth is coming to an end.  I used to be able to absorb a lot of pain and now it's overwhelming/depressing.

I want to try and be an active member since it seems to help myself and others.  There isn't really much empathetic support from people in my immediate surroundings (not cause they don't try they just don't understand).  They seem to think it's not that big of deal or that there's an easy treatment.  They don't understand that I have a huge threshold/tolerance to pain and if I'm complaining it's because I'm in severe pain!

I have an appointment with a PCP Friday and will see what route I need to go down for treating pain.  I'll see if it's necessary to become a PM Patient and try all the new, non narcotic, options or if just sticking to Norcos for awhile has less risks associated with it.  Can you think of anything I should share or tell my PCP?  I haven't had a PCP since I was always treated my Shriner's Hospital until I was 21.  Hopefully I am seeing a doctor that can help.  The stories I've read on here show a lot of people being treated badly by PCPs for pain.  Again, thanks!

[Tuckamore]

Hi Accountant,

Welcome to the Pain Management Forum. I am glad that you found us and took the time to post but I am so sorry that your pain is increasing. We can relate.

Unfortunately chronic pain (CP) often increases as we age... or pain develops in old injury sites or former surgical sites where there was little to no pain initially. It's one of the calamities of an aging body... even at twenty five as your surgeries (an insult to our systems at any age) stem back many years... as if you had surgery when you were 28 and are now 45. Additionally Arthritis can even set into those areas along with other pain producing conditions.

I understand your concern about long term narcotics. I've had the very same concerns. I did a lot of research a bit ago and found some good and comforting information and articles. I'd like to share some of what I learned with you.  If you look at one one of my journals it may answers address your questions. Here's the link:

http://www.medhelp.org/user_journals/show/141662/Long-Term-Opiate-Therapy?personal_page_id=14686

To summarize there are several studies that have concluded long term opiate use may actually be beneficial. Some of the benefits were most apparent in neurological pain patients. There are NO scary statistics that your hair will fall out along with your rotten teeth or that your nails will yellow and curl or that your toes turn will turn green and fall off. We are talking about the benefits of legal medications that are being legally and responsibly prescribed and used as directed.... NOT addicts that look like pin cushions from shooting up street drugs.

I hope this has been helpful. If not please feel free to ask again. I hope you will keep in touch and become active in our community. Support is an important part of good pain management... and we are here to extend our support to you and other CP sufferers.

Take Care
~Tuck