My Daughter With Chronic Pain

[Sally Girl]

Greetings to all I have been reading this message board recently, and it helps me a great deal. Thank you for all who share their stories, and it's nice to see the support you give to each other.

My daughter was perfectly healthy and loving life until she experienced a series of head injuries starting at age 17. A life threating reaction to a prescription drug (PPA) was the first incident, and then there were five blows to the head from accidents. Headaches/migraines started with the drug reaction, and it all escalated from there. Daily head pain for two to three years. Constant severe head pain since 2003.

She was treated by nine different neuros in the Twin Cities and Chicago. Diamond Headache Clinic also. Four MRI's were normal. I saw a symptom list of Chiari. I felt she had it, and I was right. She was diagnosed with Chiari by experts at The Chiari Institute, Mayo Clinic, and The University of Chicago. She was decompressed in Chicago by their expert. When she didn't get better, two LP's revealed very high intracranial pressure. She got an LP shunt last July.

She is still in constant severe pain--her whole body is in pain. She has Chiari, Syringomyelia, Intracranial Hypertension, Chronic Intractable Migraine, and Degenerative Disc Disease.

She has a fabulous G.P. who has cared for her for many years. She is currently on 14 medications. All together, she has tried about 75 medications.

He is currently prescribing 300 mg. Kadian daily with other meds for breakthrough. But the pain persists, and he feels he is running out of options.

We talked yesterday, and he said if she had terminal cancer, he would have no qualms about going up and up with pain management. But she is a young adult who is not going to die from her conditions.

We have appointments in Chicago to see more specialists in two weeks, including her neurosurgeon. But there just doesn't seem to be much of an answer. We feel quite stuck. She applied for SSI a few weeks ago. She cannot function with this pain and with medication side effects.

Thanks for letting me share.

[Scar Tissue]

Sally Girl, you have my heartfelt sympathy for your Daughter's pain. My Chronic Pain is lower back, so I can't help you much with your Daughter's issues, only to tell you that you are not alone and you chose a great board to come to. These folks have been great to me, and I'm sure they will do the same for you. Your Dr. is correct in being worried about the amount of pain Meds. she is receiving. Our bodies become immune to our medications after a while, and if at such a young age this happens to her, there would be nowhere to go on the medication scale to help her. I think you will find on this board that a lot of people including myself take the bear minimum of medication to control our pain for the very reason I stated above. Again you have my best wishes and prayers for your Daughter, and I hope these next appointments help to guide her to better pain relief!:)

[curiousforever]

Hugs.

I've been told that myself. (you don't have cancer - can't be in that much pain).

The next doc - we adjusted meds - added some - took away some others and I'm doing better than I have in over a year.

Sometimes I think the meds can actually keep you from feeling good at all - then again I don't have what your daughter does....

I hope you can find some good answers.

[lisajean]

Hi Sally,
It sounds like our daughters are in similar situations. My daughter also has constant intractable head pain due to brain damage from a tumor, hydrocephalus,shunts and brain hemmorhages. She also has severe bodywide pain. She is on SSI because she can't work, go to school or much else. Hannah is sensitive to many medications making it difficult to achieve any relief. She has been on over 60 meds in the past 5 years.
I wish I had some answers for you but we are still looking for answers ourselves. We have been to Mayo and U of C (Frim). At the moment we are trying to figure out where next to take her.
I just want you and your daughter to know you are not alone. Glad you have found these boards. Everyone here has been very helpful and supportive.
hugs,
Lisa

[Kathi49]

Sally Girl and Lisajean,

I feel deeply for both of your daughters. I do not have near the extent of the conditions you mention in regards to your daughters. I just wanted to say that I do know the intractable pain of the headaches though (cervicogenic for me). And, yes, I was stuck with them for 3 years. But mine were from DDD and a fusion really stopped the majority of them. And I am also overly sensitive to the meds.

I truly hope you both can get some answers; no one should have to suffer that much. :( My prayers are with you both.

[BrokenBladder]

Sally Girl and Lisajean,
I just wanted to send some cyber (((((hugs))))) to both of you. I can't even imagine what you must be going through.

[Sally Girl]

Thank you for your sympathetic words.

Lisa, we are with Dr. F also. We are going to see him again in two weeks. Did he do any of your daughter's surgeries? I couldn't tell you where to go next, after seeing him. You understand what I am saying. He is one of the best, who could be better?

There is always TCI in New York, but I am convinced my daughter had excellent surgeries so far. There would be nothing to "fix" from her two surgeries. Her shunt was tested in December, and it appeared to be working fine. It will be tested again, but I'm not holding much hope there is any malfunction. This is what is so perplexing.

My daughter started out taking one Percocet a day. It has taken six years to build up to this current dose of narcotics. We are so very frustrated. You would think she would not feel any pain. But it doesn't work that way.

So you try to build a life somehow. SSI and all that goes with it would help provide a safety net. Was it difficult to get for your daughter, Lisa? We are hopeful on that.

Thank you for the welcome.

[jena1225]

Welcome Sally. Sorry about your daughter's situation :( I knew LisaJean would come along, and I think you 2 can be a great support to one another. I hope you will stick around!

[Sally Girl]

Yes, she has her Hannah, and we have our Anna.

I'm actually a Sally Girl because I'm in The Salvation Army. My real name is Cheryl.

Thanks again.

[jena1225]

How ironic about your daughters' names'! I am a firm believer in "things happen for a reason" and think you were meant to "meet" eachother :)

Should we call you Cheryl?

I looked up all the problems she has and it looks like all are from her head injuries, but also her spine. How did all those injuries happen if you don't mind me asking?

Also, is she stuck with all these problems or are any curable?

[Sally Girl]

Yes, you can call me Cheryl.

She was in two car accidents, and the rest were blows to her head from running into things and falling. She has had blackouts; she falls down the stairs. Recent MRI's showed her DDD is worsening. So it all is quite discouraging.

I don't know what to do anymore.

Cheryl

[lisajean]

Cheryl,
Anna and Hannah. How ironic :( .
We live in Oregon and went to Frim after Hannahs NS at OHSU told us to see him or Rekate. Frim was awesome but he is the Chiari guru and Rekate is the Hydrocephalus guru..... we didn't know that at the time and Frim was just so nice so we went to see him. Frim did a lumbar drain trial with Hannah and then a 48 hour lidocaine trial but both failed and in fact made her worse. His next step was to inject morphine into her VP shunt and we said no way! Pretty scary stuff when you are 17 years old.
But... I would completely trust my daughters brain to Frims care so you are lucky to have found him!
Hannah does not have chiari but her brain tumor was in her cerebellum so I am guessing that scar tissue, brain inflammation etc is similar. And then there is the "brain pain" . It is hard to find info regarding prognosis and treatment when there is not even a medical term for the pain our girls feel.
Hannah also started with darvocet for pain, had weeks to months where she needed little to none, then the slow decline to constant pain, shunt revisions, medical management etc.....
It took us 8 months to get SSI for Hannah and we did this w/o a lawyer. She was denied the first time due to poor reporting from her doctors but I made sure when we appealed that I wrote down everything in detail on the functional report. They sent Hannah to a neuropsych who was able to plead her case (decreased memory, decreased processing, depression and anxiety). I wonder if she was accepted because of her mental status rather than her physical status. It didn't matter at the time but it does bug me a little now. SSI has been a godsend for us. Medical, home health, foster care $$ (which they pay me to provide). I HATE that my daughter is disabled but the $$, services and the increased care have helped us in the long run.
Any way, I hope that you will find answers that will give me answers ;) and we will find a cure for this aweful pain and disability!!
hugs,
Lisa

[Sally Girl]

Lisa,

This is a small world! When you wrote about Dr. Frim wanting to inject morphine into Hannah's VP shunt, I remembered reading about that! I used to read Hannah's Caring Bridge Journal, but then I lost track of it somehow. She posted on Cristina's journal (girl from WA). And I was following Hannah's journal for a while. I think I had her journal address in my head, and then I realized I had forgotten it. Her journal writing made such an impression on me. I could just imagine what you were all going through--horrible stuff. You were going to take her to Mayo Clinic when I "lost" you guys.

It makes me angry. My neighbor's son got SSI for bi-polar VERY easily (first attempt). He refuses to take medication (which made him functional at one time). He sits in his room at his parents' house and is on the computer all the time. That's all he does in life. Why was it so easy for him to get it?

Your battle getting SSI--it should not have taken that long. I'm afraid it will be hard for Anna to get it also. But there is very little we can do at this point except wait to hear.

My husband and I attended the first Patient Intracranial Hypertension Foundation Conference in Portland last fall. It was awesome. I hope they do a second one this year (www.ihrfoundation.org).

I'm so glad we connected here. You probably know better than I how to reach me privately (private message?).

I'm still trying to figure out this message board.

Write to me, OK?

Hugs to you and Hannah.

Cheryl

[lisajean]

This is why Braintalk is such an amazing site..... connections!
Yep, Hannah has a CB site and we posted re: her trip to see Frim. It is through the CB sites that I have learned so much about chiari, hydro, ICH etc....
Does Anna have a site (we can share that offline if you choose).
I will PM you my e-mail.
Hugs,
Lisa

[Mark N]

Cheryl and Lisa, sorry to hear your daughters are dealing with this and the struggles they are going through. My daughter was dealing with moderate pain and not feeling well, we finally got a diagnosis of hypoglycimia and thankfully she 'only' needs to completely redo her diet. She at least has an answer about how to feel better. It is awful to know they are not feeling well and not knowing what is wrong. I hope you find doctors that are more sympathetic to allowing people to control their pain. Keep pushing for them as they need an advocate when dealing with the medical proffession. Iknow when I first started down this path that I had to be my own advocate and not demand that I get adequate treatment.