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jeannels
@jeannels

Posts: 3
Joined: Oct 25, 2017

Any Adhesive Arachnoiditis members here?

Posted by @jeannels, Oct 25, 2017

Hi. My husband has AA. I searched for physicians who specialize in AA and got an old post from 2014. Any updates? We are seeking a specialist somewhere near Maryland and are currently in a Pain Management Clinic, in a dead-end insufficient treatment protocol that will not operate beyond their narrow parameters, which are not working well. He got transferred when his PCP retired, along with 67 other Chronic Pain patients. He is the only one with Intractable Pain and it appears that no amount of educating the NP and MD is going to make a difference. Anyway, I am trying again to find answers after nearly 12 years of his doing very well and having several pain free hours a day on the regimen that various PCPs had him on. Thank you for any help or advice or links or news.

I wish pain-free days and restful nights for each of you. Gentle hugs.

-Jeanne

REPLY

Welcome to Connect, @jeannels.
Please meet @eddougher and @charmyachicago who both have posted about adhesive arachnoiditis. They may be able to recommend a specialists in the Maryland area.

You may also wish to review this discussion on Connect. While the thread was started in 2014, messages continue to be posted throughout 2016 and 17.
– I am desperate to find a dr who treats arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I’m sorry to hear that the options available to you at your current Pain Management Clinic are not helping like previous treatments have. Did his treatments change after 12 years or has the pain changed?

@colleenyoung

Welcome to Connect, @jeannels.
Please meet @eddougher and @charmyachicago who both have posted about adhesive arachnoiditis. They may be able to recommend a specialists in the Maryland area.

You may also wish to review this discussion on Connect. While the thread was started in 2014, messages continue to be posted throughout 2016 and 17.
– I am desperate to find a dr who treats arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I’m sorry to hear that the options available to you at your current Pain Management Clinic are not helping like previous treatments have. Did his treatments change after 12 years or has the pain changed?

Jump to this post

Hi Colleen.

Thank you for replying. When he finally got an appointment in the pain management clinic, the “nurse” told him that his records had been reviewed by the doctor and handed him a script for Percocet, which was the standard for all their new patients. He had the option of saying NO, only because he had an emergency stash of the opioids, which had successfully treated his pain for so many years, Hydromorphone. All PCPs who are associated with local hospitals and that is the vast majority here, no longer will prescribe medicines for severe pain. After some experimentation, he is taking Exalgo ER and Horizant ER on occasion. They will not provide breakthrough medication nor alter his dosage of Exalgo ER to help him prevent breakthrough pain. The patients are treated as addicts or sellers until proven not to be by monthly urine tests for 19 drugs. Although, this has lessened in the past few months because I think the insurance companies started to balk at the incredible costs for such testing. Right now we are just stuck in this clinic, but when this last year of his job is done, we will try to find something else.

We were excited that our area just opened up a medical marijuana pharmacy, but the pain clinics will not keep on any patient who secures a script. I had thought that in an effort to help chronic and intractable pain patients lessen their opioid use and/or ease their breakthrough pain, the pain clinics would work with the alternative pharmacy, which has been licensed by the state. Guess not.

Thanks for the introductions. I follow a group on Facebook, which offers a broader range of contacts. I have searched repeatedly for specialists, but most are no longer in practice. There is Dr. Forrest Tennent in California, who specializes in AA. Dr. Gary of the Kaplan Center just outside of Washington DC also works with pain patients and uses some of the same protocol that Dr. Tennent does. That will probably be what we end up doing in the future. Yet, these physicians are considered alternative quacks by most main stream pain specialists that operate within the major hospital systems.

All in all, he is in much better shape than most other AA victims and we are grateful for that. Just angry that people with legitimate chronic and intractable pain have to be denied proper pain relief, while being treated abysmally, because of the “opioid crisis” caused by those who choose to illegally use and sell opioids. And..angry that this rare disorder is ignored by most pain doctors and medical schools and treated not as intractable pain, but as chronic pain or less.

Again, thank you, Colleen. And..thanks for letting me vent a bit, too.

-Jeanne

@colleenyoung

Welcome to Connect, @jeannels.
Please meet @eddougher and @charmyachicago who both have posted about adhesive arachnoiditis. They may be able to recommend a specialists in the Maryland area.

You may also wish to review this discussion on Connect. While the thread was started in 2014, messages continue to be posted throughout 2016 and 17.
– I am desperate to find a dr who treats arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I’m sorry to hear that the options available to you at your current Pain Management Clinic are not helping like previous treatments have. Did his treatments change after 12 years or has the pain changed?

Jump to this post

Hi Jeanne, my name is Cindy and I live in Va. I had a Lumbar Arachnoid Mass removed from inside my thecal sac in 2010. The mass was missed by the Radiologist in 2008. They found it when I had Myelogram in 2010 which showed a complete block. Since then I suffer from Adhesive Arachnoiditis due to my nerves being permantly fused together. I also am having difficulty getting the treatment needed to control the debilitating pain that comes with this terrible disease which has now progressed to severe bladder issues. The opioid addiction/ overdoses issue has definitely affected patients with these debilitating diseases and the ability to be able to get the medicines needed to control our painl. I recently lost my doctor and whom I also consider a friend due to him being arrested by the DEA claiming he was over prescribing pain medications. I can’t speak for the other patients, however; I do know everyone is outraged over his arrest. If it was not for my Doctor I would have been confined to my bed/ couch for the last 7 years and possibly may have ended my life due to the terrible pain that I endured and although I still lived with pain on a daily basis he made it possible to still be able to live my life and not be a prisoner of my home. He had just received his license to prescribe medical Marijuana and we were excited to give it a shot in hopes of eventually being narcotic free. He is a very hardworking, compassionate, and caring man who worked 7 days a week to treat sick ppl including those who had no medical insurance and could not afford treatment only charging them $20 a visit. It is my opinion that we need more doctors like him. I am not denying that Opioid Addiction is rampant in this country however so is debilitating disease and Injurys that require these medications for treatment. If Doctors are allowed to do their jobs and follow the guidelines with proper diagnosis, education of medication use and doing the testing required by law to make sure their patients are taking their medications properly then I believe we will see improvement regarding this very serious issue. My doctor has hearing on Jan 18th pls say a prayer for this amazing man. I pray all charges are dropped and he can get back to doing what he excels at….caring for human beings. If anyone can provide me with any doctors that specialize in Adhesive Arachnoiditis I would greatly appreciate it. Thank you and God bless you all! CINDY MAY

Hi. I. Am. Suffering. With. Excruciating pain in my back going down my legs every day of my life I have adhesive arachnoiditis..My payment without it is not treating my pain well enough I’ve been on the same pain medicine for 20 years I know I need an upgrade it needs to have something to help me I’m not even living I’m only existing I have no life at all I can’t cook I can clean I can’t do anything I can’t go out with my daughter and grandkids I can barely walk I need someone that specializes in this and is not afraid to give out pain medicine but god sake’s there are so many people in this country that are some suffering from severe chronic Express Jennings hey why do we have to be punished because of the junkies under streets this is so unfair it is wrong in every sense of the word I need help I need this pain to stop or at least control much better is there anyone out there that knows where I can get help in the South Jersey area such as Blackwood swell or Williamstown New Jersey .. so please write back to me I need to get relief ASAP I have a spinal cord surgery November 2016 and his left me with this dreadful disease please help my pain thank you and God bless you AnnMaria

Liked by maycin63

Hello, @annmaria, and welcome to Mayo Clinic Connect. I am so sorry to hear your pain is so excruciating and that you are feeling like you are only existing right now. I’d also like to introduce you @lightbender, who has talked about this disease, and also to @jimhd, @johnbishop, @sandytoes14 and @IndianaScott, who all have experienced significant pain personally or are closely connected to others who have had terrible pain and are seeking relief.

Since you mentioned your pain affecting things like cooking and cleaning, I wondered if you have someone helping you with daily activities right now, @annamaria?

@annmaria

Hi. I. Am. Suffering. With. Excruciating pain in my back going down my legs every day of my life I have adhesive arachnoiditis..My payment without it is not treating my pain well enough I’ve been on the same pain medicine for 20 years I know I need an upgrade it needs to have something to help me I’m not even living I’m only existing I have no life at all I can’t cook I can clean I can’t do anything I can’t go out with my daughter and grandkids I can barely walk I need someone that specializes in this and is not afraid to give out pain medicine but god sake’s there are so many people in this country that are some suffering from severe chronic Express Jennings hey why do we have to be punished because of the junkies under streets this is so unfair it is wrong in every sense of the word I need help I need this pain to stop or at least control much better is there anyone out there that knows where I can get help in the South Jersey area such as Blackwood swell or Williamstown New Jersey .. so please write back to me I need to get relief ASAP I have a spinal cord surgery November 2016 and his left me with this dreadful disease please help my pain thank you and God bless you AnnMaria

Jump to this post

Hello AnnMaria (@annamaria), I would like to add my welcome to Connect along with @lisalucier and other members. I am sorry you are in such pain. I know that it can seem unbearable at times. There is another discussion you might want to read through to see if you find any help:

A discussion listed in Colleen's (@colleenyoung) post earlier in this discussion — "I am desperate to find a dr who treats arachnoiditis":
https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I did a search and found the following article that mentions Dr. Forrest Tennant who talks about a new treatment for arachnoiditis:
New Treatment Gives Hope to Arachnoiditis Patients:
https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

Then I did a further search on Google Scholar (https://scholar.google.com/) using "Dr. Forest Tennant arachnoiditis treatment" and came up with more articles. Here is the link for the search results:
https://scholar.google.com/scholar?hl=en&as_sdt=0,24&q=Dr.+Forest+Tennant+arachnoiditis+treatment

Please keep asking questions and advocating for yourself. You are not alone.

Hoping you get some relief for your pain soon.

John

Hello @annamaria , I am sorry that you are in such intense pain. I suffer with fibromyalgia, degenerative disk disease, and chronic pain. There are times when the pain is so intense, all I can do is lay down.
Annamaria, you say you have had this for 20 years and you feel like your pain medicine is no longer working. Have you spoken to your doctor about this? Has your pain changed?

Crazy name, huh? Pain is nothing to laugh at. Where nerves cluster and causes pain that will make me crazy. No cure, just control pain. No doctors specialize, it is relatively rare. Caused by multiple surgeries, multiple injections, which ìve had every one. I'm hardly able to walk, the pain is so great. I'm housebound in a recliner. Have to have help with everything. Wheelchair if I have to leave my chair. Anybody else have this ?

@galady

Crazy name, huh? Pain is nothing to laugh at. Where nerves cluster and causes pain that will make me crazy. No cure, just control pain. No doctors specialize, it is relatively rare. Caused by multiple surgeries, multiple injections, which ìve had every one. I'm hardly able to walk, the pain is so great. I'm housebound in a recliner. Have to have help with everything. Wheelchair if I have to leave my chair. Anybody else have this ?

Jump to this post

Hello @galady,

I moved your discussion and combined it with an existing discussion about adhesive arachnoiditis. I did this so you could meet the members who are already talking ab out this rare condition. I suggest clicking on VIEW & REPLY so that you can see the whole discussion and can read other members' posts. You may also want to check out the following discussion as well, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/.

Oh thank you. I'm new and did not know the procedure.

@galady

Oh thank you. I'm new and did not know the procedure.

Jump to this post

Not a problem @galady. On the website, you can search for specific topics by clicking on the magnifying glass symbol and searching for keywords or topics. After you search, you can narrow your results on the right side of your screen. It can be a bit confusing at times, so don't hesitate to ask questions! You can also click on the Groups tab at the top of the screen and find specific groups to look through. If you click on a group it will bring up all of the discussions that have been started in that group. There is a lot to offer on Connect, I suggest doing some exploring.

@colleenyoung

Welcome to Connect, @jeannels.
Please meet @eddougher and @charmyachicago who both have posted about adhesive arachnoiditis. They may be able to recommend a specialists in the Maryland area.

You may also wish to review this discussion on Connect. While the thread was started in 2014, messages continue to be posted throughout 2016 and 17.
– I am desperate to find a dr who treats arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I’m sorry to hear that the options available to you at your current Pain Management Clinic are not helping like previous treatments have. Did his treatments change after 12 years or has the pain changed?

Jump to this post

I hate these bladder issues. Can anything be done for that? As if we don't have enough issues.

@colleenyoung

Welcome to Connect, @jeannels.
Please meet @eddougher and @charmyachicago who both have posted about adhesive arachnoiditis. They may be able to recommend a specialists in the Maryland area.

You may also wish to review this discussion on Connect. While the thread was started in 2014, messages continue to be posted throughout 2016 and 17.
– I am desperate to find a dr who treats arachnoiditis, https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I’m sorry to hear that the options available to you at your current Pain Management Clinic are not helping like previous treatments have. Did his treatments change after 12 years or has the pain changed?

Jump to this post

Happening all over. All doctors are scared to death, thus just give us tylenol! Ha, what a laugh! I guess if you cut your arm off, it would still be tylenol.

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